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Team-Based Care is Crucial for Head-and-Neck Cancer Cases
Team-Based Care is Crucial for Head-and-Neck Cancer Cases
PHOENIX – A 70-year-old Vietnam veteran with oropharyngeal cancer presented challenges beyond his disease.
He couldn’t afford transportation for daily radiation treatments and had lost > 10% of his body weight due to pain and eating difficulties, recalled radiation oncologist Vinita Takiar, MD, PhD, in a presentation at the annual meeting of the Association of VA Hematology/Oncology.
To make matters more difficult, his wife held medical power of attorney despite his apparent competence to make decisions, said Takiar, who formerly worked with the US Department of Veterans Affairs (VA) Cincinnati Healthcare System and is now chair of radiation oncology at Penn State University.
All these factors would likely have derailed his treatment if not for a coordinated team intervention, Takiar said. Fortunately, the clinic launched a multifaceted effort involving representatives from the social work, dentistry, ethics, nutrition, and chaplaincy departments.
When surgery became impossible because the patient couldn’t lie on the operating table for adequate tumor exposure, she said, the existing team framework enabled a seamless and rapid transition to radiation with concurrent chemotherapy.
The patient completed treatment with an excellent response, offering a lesson in the importance of multidisciplinary care in head-and-neck cancers, she said.
In fact, when it comes to these forms of cancer, coordinated care “is probably more impactful than any treatment that we’re going to come up with,” she said. “The data show that when we do multidisciplinary care and we do it well, it actually improves the patient experience and outcomes.”
As Takiar noted, teamwork matters in many ways. It leads to better logistics and can address disparities, reduce financial burden and stigma, and even increase clinical trial involvement.
She pointed to studies linking teamwork to better outcomes, support for patients, and overall survival.
Takiar highlighted different parts of teams headed by radiation oncologists who act as “a node to improve multimodal care delivery.”
Speech and swallowing specialists, for example, are helpful in head-and-neck cancer because “there’s an impact on speech, swallowing, and appearance. Our patients don’t want to go out to dinner with friends because they can’t do it.”
Dentists and prosthodontists are key team members too: “I have dentists who have my cell phone number. They just call me: ‘Can I do this extraction? Was this in your radiation field? What was the dose?’”
Other team members include ear, nose, and throat specialists, palliative and supportive care specialists, medical oncologists, nurses, pathologists, transportation workers, and service connection specialists. She noted that previous military experience can affect radiation therapy. For example, the physical restraints required during treatment present particular challenges for veterans who’ve had wartime trauma. These patients may require therapy adjustments.
What’s next on the horizon? Takiar highlighted precision oncology and molecular profiling, artificial intelligence in care decisions and in radiation planning, telemedicine and virtual tumor boards, and expanded survivorship programs.
As for now, she urged colleagues to not be afraid to chat with radiation oncologists. “Please talk to us. We prioritize open communication and shared decision-making with the entire team,” she said. “If you see something and think your radiation oncologist should know about it, you think it was caused by the radiation, you should reach out to us.”
Takiar reported no disclosures.
PHOENIX – A 70-year-old Vietnam veteran with oropharyngeal cancer presented challenges beyond his disease.
He couldn’t afford transportation for daily radiation treatments and had lost > 10% of his body weight due to pain and eating difficulties, recalled radiation oncologist Vinita Takiar, MD, PhD, in a presentation at the annual meeting of the Association of VA Hematology/Oncology.
To make matters more difficult, his wife held medical power of attorney despite his apparent competence to make decisions, said Takiar, who formerly worked with the US Department of Veterans Affairs (VA) Cincinnati Healthcare System and is now chair of radiation oncology at Penn State University.
All these factors would likely have derailed his treatment if not for a coordinated team intervention, Takiar said. Fortunately, the clinic launched a multifaceted effort involving representatives from the social work, dentistry, ethics, nutrition, and chaplaincy departments.
When surgery became impossible because the patient couldn’t lie on the operating table for adequate tumor exposure, she said, the existing team framework enabled a seamless and rapid transition to radiation with concurrent chemotherapy.
The patient completed treatment with an excellent response, offering a lesson in the importance of multidisciplinary care in head-and-neck cancers, she said.
In fact, when it comes to these forms of cancer, coordinated care “is probably more impactful than any treatment that we’re going to come up with,” she said. “The data show that when we do multidisciplinary care and we do it well, it actually improves the patient experience and outcomes.”
As Takiar noted, teamwork matters in many ways. It leads to better logistics and can address disparities, reduce financial burden and stigma, and even increase clinical trial involvement.
She pointed to studies linking teamwork to better outcomes, support for patients, and overall survival.
Takiar highlighted different parts of teams headed by radiation oncologists who act as “a node to improve multimodal care delivery.”
Speech and swallowing specialists, for example, are helpful in head-and-neck cancer because “there’s an impact on speech, swallowing, and appearance. Our patients don’t want to go out to dinner with friends because they can’t do it.”
Dentists and prosthodontists are key team members too: “I have dentists who have my cell phone number. They just call me: ‘Can I do this extraction? Was this in your radiation field? What was the dose?’”
Other team members include ear, nose, and throat specialists, palliative and supportive care specialists, medical oncologists, nurses, pathologists, transportation workers, and service connection specialists. She noted that previous military experience can affect radiation therapy. For example, the physical restraints required during treatment present particular challenges for veterans who’ve had wartime trauma. These patients may require therapy adjustments.
What’s next on the horizon? Takiar highlighted precision oncology and molecular profiling, artificial intelligence in care decisions and in radiation planning, telemedicine and virtual tumor boards, and expanded survivorship programs.
As for now, she urged colleagues to not be afraid to chat with radiation oncologists. “Please talk to us. We prioritize open communication and shared decision-making with the entire team,” she said. “If you see something and think your radiation oncologist should know about it, you think it was caused by the radiation, you should reach out to us.”
Takiar reported no disclosures.
PHOENIX – A 70-year-old Vietnam veteran with oropharyngeal cancer presented challenges beyond his disease.
He couldn’t afford transportation for daily radiation treatments and had lost > 10% of his body weight due to pain and eating difficulties, recalled radiation oncologist Vinita Takiar, MD, PhD, in a presentation at the annual meeting of the Association of VA Hematology/Oncology.
To make matters more difficult, his wife held medical power of attorney despite his apparent competence to make decisions, said Takiar, who formerly worked with the US Department of Veterans Affairs (VA) Cincinnati Healthcare System and is now chair of radiation oncology at Penn State University.
All these factors would likely have derailed his treatment if not for a coordinated team intervention, Takiar said. Fortunately, the clinic launched a multifaceted effort involving representatives from the social work, dentistry, ethics, nutrition, and chaplaincy departments.
When surgery became impossible because the patient couldn’t lie on the operating table for adequate tumor exposure, she said, the existing team framework enabled a seamless and rapid transition to radiation with concurrent chemotherapy.
The patient completed treatment with an excellent response, offering a lesson in the importance of multidisciplinary care in head-and-neck cancers, she said.
In fact, when it comes to these forms of cancer, coordinated care “is probably more impactful than any treatment that we’re going to come up with,” she said. “The data show that when we do multidisciplinary care and we do it well, it actually improves the patient experience and outcomes.”
As Takiar noted, teamwork matters in many ways. It leads to better logistics and can address disparities, reduce financial burden and stigma, and even increase clinical trial involvement.
She pointed to studies linking teamwork to better outcomes, support for patients, and overall survival.
Takiar highlighted different parts of teams headed by radiation oncologists who act as “a node to improve multimodal care delivery.”
Speech and swallowing specialists, for example, are helpful in head-and-neck cancer because “there’s an impact on speech, swallowing, and appearance. Our patients don’t want to go out to dinner with friends because they can’t do it.”
Dentists and prosthodontists are key team members too: “I have dentists who have my cell phone number. They just call me: ‘Can I do this extraction? Was this in your radiation field? What was the dose?’”
Other team members include ear, nose, and throat specialists, palliative and supportive care specialists, medical oncologists, nurses, pathologists, transportation workers, and service connection specialists. She noted that previous military experience can affect radiation therapy. For example, the physical restraints required during treatment present particular challenges for veterans who’ve had wartime trauma. These patients may require therapy adjustments.
What’s next on the horizon? Takiar highlighted precision oncology and molecular profiling, artificial intelligence in care decisions and in radiation planning, telemedicine and virtual tumor boards, and expanded survivorship programs.
As for now, she urged colleagues to not be afraid to chat with radiation oncologists. “Please talk to us. We prioritize open communication and shared decision-making with the entire team,” she said. “If you see something and think your radiation oncologist should know about it, you think it was caused by the radiation, you should reach out to us.”
Takiar reported no disclosures.
Team-Based Care is Crucial for Head-and-Neck Cancer Cases
Team-Based Care is Crucial for Head-and-Neck Cancer Cases
'Distress is the Norm': How Oncologists Can Open the Door to Patient Mental Health
'Distress is the Norm': How Oncologists Can Open the Door to Patient Mental Health
For patients with cancer, the determining factor in whether they pursue mental health services is often whether their oncologist explicitly says it is a good idea, a psychologist said during the July Association of VA Hematology and Oncology (AVAHO) seminar in Long Beach, California, on treating veterans with renal cell carcinoma (RCC).
Kysa Christie, PhD, of the West Los Angeles Veterans Affairs Medical Center, presented findings from a 2018 study in which researchers asked Swiss patients with cancer whether their oncologist discussed their emotional health with them.
In terms of boosting intake, it did not matter if oncologists acknowledged distress or pointed out that psychosocial services existed. Instead, a direct recommendation made a difference, increasing the likelihood of using the services over a 4-month period after initial assessment (odds ratio, 6.27).
“What it took was, ‘I really recommend this. This is something that I would want you to try,’” Christie said.
Oncologists are crucial links between patients and mental health services, Christie said: “If people don’t ask about [distress], you’re not going to see it, but it’s there. Distress is the norm, right? It is not a weakness. It is something that we expect to see.”
Christie noted that an estimated 20% of cancer patients have major depressive disorder, and 35% to 40% have a diagnosable psychiatric condition. RCC shows disproportionately high rates of mental strain. According to Christie, research suggests that about three-fourths of the population report elevated levels of distress as evidenced by patients who scored ≥ 5 on the NCCN Distress Thermometer. Patients with cancer have an estimated 20% higher risk of suicide, especially during the first 12 months after diagnosis and at end of life, she added.
“Early during a diagnosis phase, where you’re having a lot of tests being done, you know something is happening. But you don’t know what,” Christie said. “It could be very serious. That’s just a lot of stress to hold and not know how to plan for.”
After diagnosis, routine could set in and lower distress, she said. Then terminal illness may spike it back up again. Does mental health treatment work in patients with cancer?
“There’s a really strong body of evidence-based treatments for depression, anxiety, adjustment disorders, and coping with different cancers,” Christie said. But it is a step too far to expect patients to ask for help while they are juggling appointments, tests, infusions, and more. “It’s a big ask, right? It’s setting people up for failure.”
To help, Christie said she is embedded with a medical oncology team and routinely talks with the staff about which patients may need help. “One thing I like to do is try to have brief visits with veterans and introduce myself when they come to clinic. I treat it like an opt-out rather than an opt-in program: I’ll just pop into the exam room. They don’t have to ask to see me.”
Christie focuses on open-ended questions and talks about resources ranging from support groups and brief appointments to extensive individual therapy.
Another approach is a strategy known as the “warm handoff,” when an oncologist directly introduces a patient to a mental health professional. “It’s a transfer of care in front of the veteran: It’s much more time-efficient than putting in a referral.”
Christie explained how this can work. A clinician will ask her to meet with a patient during an appointment, perhaps in a couple minutes.
“Then I pop into the room, and the oncologist says, ‘Thanks for joining us. This is Mr. Jones. He has been experiencing feelings of anxiety and sadness, and we’d appreciate your help in exploring some options that might help.’ I turn to the patient and ask, ‘What more would you add?’ Then I either take Mr. Jones back to my office or stay in clinic, and we’re off to the races.”
Christie reported no disclosures.
For patients with cancer, the determining factor in whether they pursue mental health services is often whether their oncologist explicitly says it is a good idea, a psychologist said during the July Association of VA Hematology and Oncology (AVAHO) seminar in Long Beach, California, on treating veterans with renal cell carcinoma (RCC).
Kysa Christie, PhD, of the West Los Angeles Veterans Affairs Medical Center, presented findings from a 2018 study in which researchers asked Swiss patients with cancer whether their oncologist discussed their emotional health with them.
In terms of boosting intake, it did not matter if oncologists acknowledged distress or pointed out that psychosocial services existed. Instead, a direct recommendation made a difference, increasing the likelihood of using the services over a 4-month period after initial assessment (odds ratio, 6.27).
“What it took was, ‘I really recommend this. This is something that I would want you to try,’” Christie said.
Oncologists are crucial links between patients and mental health services, Christie said: “If people don’t ask about [distress], you’re not going to see it, but it’s there. Distress is the norm, right? It is not a weakness. It is something that we expect to see.”
Christie noted that an estimated 20% of cancer patients have major depressive disorder, and 35% to 40% have a diagnosable psychiatric condition. RCC shows disproportionately high rates of mental strain. According to Christie, research suggests that about three-fourths of the population report elevated levels of distress as evidenced by patients who scored ≥ 5 on the NCCN Distress Thermometer. Patients with cancer have an estimated 20% higher risk of suicide, especially during the first 12 months after diagnosis and at end of life, she added.
“Early during a diagnosis phase, where you’re having a lot of tests being done, you know something is happening. But you don’t know what,” Christie said. “It could be very serious. That’s just a lot of stress to hold and not know how to plan for.”
After diagnosis, routine could set in and lower distress, she said. Then terminal illness may spike it back up again. Does mental health treatment work in patients with cancer?
“There’s a really strong body of evidence-based treatments for depression, anxiety, adjustment disorders, and coping with different cancers,” Christie said. But it is a step too far to expect patients to ask for help while they are juggling appointments, tests, infusions, and more. “It’s a big ask, right? It’s setting people up for failure.”
To help, Christie said she is embedded with a medical oncology team and routinely talks with the staff about which patients may need help. “One thing I like to do is try to have brief visits with veterans and introduce myself when they come to clinic. I treat it like an opt-out rather than an opt-in program: I’ll just pop into the exam room. They don’t have to ask to see me.”
Christie focuses on open-ended questions and talks about resources ranging from support groups and brief appointments to extensive individual therapy.
Another approach is a strategy known as the “warm handoff,” when an oncologist directly introduces a patient to a mental health professional. “It’s a transfer of care in front of the veteran: It’s much more time-efficient than putting in a referral.”
Christie explained how this can work. A clinician will ask her to meet with a patient during an appointment, perhaps in a couple minutes.
“Then I pop into the room, and the oncologist says, ‘Thanks for joining us. This is Mr. Jones. He has been experiencing feelings of anxiety and sadness, and we’d appreciate your help in exploring some options that might help.’ I turn to the patient and ask, ‘What more would you add?’ Then I either take Mr. Jones back to my office or stay in clinic, and we’re off to the races.”
Christie reported no disclosures.
For patients with cancer, the determining factor in whether they pursue mental health services is often whether their oncologist explicitly says it is a good idea, a psychologist said during the July Association of VA Hematology and Oncology (AVAHO) seminar in Long Beach, California, on treating veterans with renal cell carcinoma (RCC).
Kysa Christie, PhD, of the West Los Angeles Veterans Affairs Medical Center, presented findings from a 2018 study in which researchers asked Swiss patients with cancer whether their oncologist discussed their emotional health with them.
In terms of boosting intake, it did not matter if oncologists acknowledged distress or pointed out that psychosocial services existed. Instead, a direct recommendation made a difference, increasing the likelihood of using the services over a 4-month period after initial assessment (odds ratio, 6.27).
“What it took was, ‘I really recommend this. This is something that I would want you to try,’” Christie said.
Oncologists are crucial links between patients and mental health services, Christie said: “If people don’t ask about [distress], you’re not going to see it, but it’s there. Distress is the norm, right? It is not a weakness. It is something that we expect to see.”
Christie noted that an estimated 20% of cancer patients have major depressive disorder, and 35% to 40% have a diagnosable psychiatric condition. RCC shows disproportionately high rates of mental strain. According to Christie, research suggests that about three-fourths of the population report elevated levels of distress as evidenced by patients who scored ≥ 5 on the NCCN Distress Thermometer. Patients with cancer have an estimated 20% higher risk of suicide, especially during the first 12 months after diagnosis and at end of life, she added.
“Early during a diagnosis phase, where you’re having a lot of tests being done, you know something is happening. But you don’t know what,” Christie said. “It could be very serious. That’s just a lot of stress to hold and not know how to plan for.”
After diagnosis, routine could set in and lower distress, she said. Then terminal illness may spike it back up again. Does mental health treatment work in patients with cancer?
“There’s a really strong body of evidence-based treatments for depression, anxiety, adjustment disorders, and coping with different cancers,” Christie said. But it is a step too far to expect patients to ask for help while they are juggling appointments, tests, infusions, and more. “It’s a big ask, right? It’s setting people up for failure.”
To help, Christie said she is embedded with a medical oncology team and routinely talks with the staff about which patients may need help. “One thing I like to do is try to have brief visits with veterans and introduce myself when they come to clinic. I treat it like an opt-out rather than an opt-in program: I’ll just pop into the exam room. They don’t have to ask to see me.”
Christie focuses on open-ended questions and talks about resources ranging from support groups and brief appointments to extensive individual therapy.
Another approach is a strategy known as the “warm handoff,” when an oncologist directly introduces a patient to a mental health professional. “It’s a transfer of care in front of the veteran: It’s much more time-efficient than putting in a referral.”
Christie explained how this can work. A clinician will ask her to meet with a patient during an appointment, perhaps in a couple minutes.
“Then I pop into the room, and the oncologist says, ‘Thanks for joining us. This is Mr. Jones. He has been experiencing feelings of anxiety and sadness, and we’d appreciate your help in exploring some options that might help.’ I turn to the patient and ask, ‘What more would you add?’ Then I either take Mr. Jones back to my office or stay in clinic, and we’re off to the races.”
Christie reported no disclosures.
'Distress is the Norm': How Oncologists Can Open the Door to Patient Mental Health
'Distress is the Norm': How Oncologists Can Open the Door to Patient Mental Health
Contraceptive Care Clinic Focuses on Military Readiness
SAN DIEGO — Not surprisingly, the contraception clinic at Madigan Army Medical Center near Tacoma, Wash., is popular among female soldiers seeking to avoid pregnancy. However, about half of the patients drop by for other reasons, the military pharmacist who runs the program told colleagues here at the Joint Federal Pharmacy Seminar.
“They come to suppress menstruation, to get help with pain, to get help with PCOS [polycystic ovary syndrome] symptoms. They're coming for a wide range of indications that we use contraception to treat,” said Sarah Abel, PharmD, a clinical pharmacist.
Regardless of the reason, Abel emphasized that contraceptives can significantly impact the ability of female soldiers to do their jobs. “If you have heavy periods and can't make it in work, or you have endometriosis and requiring a lot of doctor's appointments, or you're deployed and you get pregnant, these are all situations where contraceptive care matters,” she said. Rates of unintended pregnancy are higher in servicewomen than in the general population.
Abel, who opened the medical center’s contraceptive clinic about 10 years ago, stressed that it’s crucial to military readiness considering that the percentage of women in the American military is approaching 20%.
Thanks to a 2022 edict, military hospitals and clinics are required to offer walk-in contraceptive services with same-day access, no requirements for appointments or referrals. An announcement about the mandate noted that these contraceptive services, such as preventing unplanned pregnancy and decreasing menstrual periods, “support the overall well-being of the force and optimize personal warrior readiness.”
As Abel noted, 29 states and Washington D.C. allow pharmacists to prescribe contraception to outpatients, although the requirements vary. “Can we start practicing at the top of our license and start prescribing in the outpatient setting? Absolutely we should,” she said. “Pharmacists have a very unique opportunity to be a part of this.”
Abel also shared that setting up a contraceptive program requires patience and education. “I cannot tell you how many women have come to me who don't know the different names of their body parts, women who've had two babies that don't understand how their body works. So, I constantly find myself taking extra time to do general sexual education,” she said.
There are many lessons to impart to patients about sexual health. For example, birth control drugs and devices do not prevent transmission of sexually transmitted infections (STIs). “So I have bowls of condoms literally everywhere because condoms are the only thing that protects against STIs,” Abel said.
In terms of devices, “we have diaphragms available and cervical caps,” she said. “The Caya diaphragm is a TRICARE-covered benefit. It’s a small purple diaphragm, one size fits most. We can prescribe it, and it is good for 2 years. Unfortunately, spermicide, which you have to use with these things, is not a TRICARE-covered benefit.”
Hormonal contraceptives are also available, with Abel recommending the continuous monophasic type for most women. “Please don't tell women they have to have their periods. They don't,” she said. “What I'm trying to do is give a woman some stability in her hormones. She can know and expect what she's going to feel like. She's not going to wake up and say, ‘Oh God, today's the day. I'm going to be like this for a week.’”
Patches are another option, and a flurry of patients have been asking about them because of recent TikTok videos promoting their use. “We have the Xulane patch, our bread and butter. They wear it on their shoulder, their hip, their butt, or their back. They leave it in place for a week at a time. And every week, they will change that patch. I usually have to walk patients through a whole month to help them understand how that works.”
Another option, the NuvaRing, is notable because it’s linked to low amounts of breakthrough bleeding Abel noted. An extended form is now available that doesn’t need to be removed during menstrual periods.
Medroxyprogesterone injections, which are linked to bone loss, and subdermal implants, which may be less effective in women over 130% of their ideal weight are also available, she said.
Finally, IUDs are an option, although when they fail, they’re linked to ectopic pregnancies.
Abel has no disclosures.
SAN DIEGO — Not surprisingly, the contraception clinic at Madigan Army Medical Center near Tacoma, Wash., is popular among female soldiers seeking to avoid pregnancy. However, about half of the patients drop by for other reasons, the military pharmacist who runs the program told colleagues here at the Joint Federal Pharmacy Seminar.
“They come to suppress menstruation, to get help with pain, to get help with PCOS [polycystic ovary syndrome] symptoms. They're coming for a wide range of indications that we use contraception to treat,” said Sarah Abel, PharmD, a clinical pharmacist.
Regardless of the reason, Abel emphasized that contraceptives can significantly impact the ability of female soldiers to do their jobs. “If you have heavy periods and can't make it in work, or you have endometriosis and requiring a lot of doctor's appointments, or you're deployed and you get pregnant, these are all situations where contraceptive care matters,” she said. Rates of unintended pregnancy are higher in servicewomen than in the general population.
Abel, who opened the medical center’s contraceptive clinic about 10 years ago, stressed that it’s crucial to military readiness considering that the percentage of women in the American military is approaching 20%.
Thanks to a 2022 edict, military hospitals and clinics are required to offer walk-in contraceptive services with same-day access, no requirements for appointments or referrals. An announcement about the mandate noted that these contraceptive services, such as preventing unplanned pregnancy and decreasing menstrual periods, “support the overall well-being of the force and optimize personal warrior readiness.”
As Abel noted, 29 states and Washington D.C. allow pharmacists to prescribe contraception to outpatients, although the requirements vary. “Can we start practicing at the top of our license and start prescribing in the outpatient setting? Absolutely we should,” she said. “Pharmacists have a very unique opportunity to be a part of this.”
Abel also shared that setting up a contraceptive program requires patience and education. “I cannot tell you how many women have come to me who don't know the different names of their body parts, women who've had two babies that don't understand how their body works. So, I constantly find myself taking extra time to do general sexual education,” she said.
There are many lessons to impart to patients about sexual health. For example, birth control drugs and devices do not prevent transmission of sexually transmitted infections (STIs). “So I have bowls of condoms literally everywhere because condoms are the only thing that protects against STIs,” Abel said.
In terms of devices, “we have diaphragms available and cervical caps,” she said. “The Caya diaphragm is a TRICARE-covered benefit. It’s a small purple diaphragm, one size fits most. We can prescribe it, and it is good for 2 years. Unfortunately, spermicide, which you have to use with these things, is not a TRICARE-covered benefit.”
Hormonal contraceptives are also available, with Abel recommending the continuous monophasic type for most women. “Please don't tell women they have to have their periods. They don't,” she said. “What I'm trying to do is give a woman some stability in her hormones. She can know and expect what she's going to feel like. She's not going to wake up and say, ‘Oh God, today's the day. I'm going to be like this for a week.’”
Patches are another option, and a flurry of patients have been asking about them because of recent TikTok videos promoting their use. “We have the Xulane patch, our bread and butter. They wear it on their shoulder, their hip, their butt, or their back. They leave it in place for a week at a time. And every week, they will change that patch. I usually have to walk patients through a whole month to help them understand how that works.”
Another option, the NuvaRing, is notable because it’s linked to low amounts of breakthrough bleeding Abel noted. An extended form is now available that doesn’t need to be removed during menstrual periods.
Medroxyprogesterone injections, which are linked to bone loss, and subdermal implants, which may be less effective in women over 130% of their ideal weight are also available, she said.
Finally, IUDs are an option, although when they fail, they’re linked to ectopic pregnancies.
Abel has no disclosures.
SAN DIEGO — Not surprisingly, the contraception clinic at Madigan Army Medical Center near Tacoma, Wash., is popular among female soldiers seeking to avoid pregnancy. However, about half of the patients drop by for other reasons, the military pharmacist who runs the program told colleagues here at the Joint Federal Pharmacy Seminar.
“They come to suppress menstruation, to get help with pain, to get help with PCOS [polycystic ovary syndrome] symptoms. They're coming for a wide range of indications that we use contraception to treat,” said Sarah Abel, PharmD, a clinical pharmacist.
Regardless of the reason, Abel emphasized that contraceptives can significantly impact the ability of female soldiers to do their jobs. “If you have heavy periods and can't make it in work, or you have endometriosis and requiring a lot of doctor's appointments, or you're deployed and you get pregnant, these are all situations where contraceptive care matters,” she said. Rates of unintended pregnancy are higher in servicewomen than in the general population.
Abel, who opened the medical center’s contraceptive clinic about 10 years ago, stressed that it’s crucial to military readiness considering that the percentage of women in the American military is approaching 20%.
Thanks to a 2022 edict, military hospitals and clinics are required to offer walk-in contraceptive services with same-day access, no requirements for appointments or referrals. An announcement about the mandate noted that these contraceptive services, such as preventing unplanned pregnancy and decreasing menstrual periods, “support the overall well-being of the force and optimize personal warrior readiness.”
As Abel noted, 29 states and Washington D.C. allow pharmacists to prescribe contraception to outpatients, although the requirements vary. “Can we start practicing at the top of our license and start prescribing in the outpatient setting? Absolutely we should,” she said. “Pharmacists have a very unique opportunity to be a part of this.”
Abel also shared that setting up a contraceptive program requires patience and education. “I cannot tell you how many women have come to me who don't know the different names of their body parts, women who've had two babies that don't understand how their body works. So, I constantly find myself taking extra time to do general sexual education,” she said.
There are many lessons to impart to patients about sexual health. For example, birth control drugs and devices do not prevent transmission of sexually transmitted infections (STIs). “So I have bowls of condoms literally everywhere because condoms are the only thing that protects against STIs,” Abel said.
In terms of devices, “we have diaphragms available and cervical caps,” she said. “The Caya diaphragm is a TRICARE-covered benefit. It’s a small purple diaphragm, one size fits most. We can prescribe it, and it is good for 2 years. Unfortunately, spermicide, which you have to use with these things, is not a TRICARE-covered benefit.”
Hormonal contraceptives are also available, with Abel recommending the continuous monophasic type for most women. “Please don't tell women they have to have their periods. They don't,” she said. “What I'm trying to do is give a woman some stability in her hormones. She can know and expect what she's going to feel like. She's not going to wake up and say, ‘Oh God, today's the day. I'm going to be like this for a week.’”
Patches are another option, and a flurry of patients have been asking about them because of recent TikTok videos promoting their use. “We have the Xulane patch, our bread and butter. They wear it on their shoulder, their hip, their butt, or their back. They leave it in place for a week at a time. And every week, they will change that patch. I usually have to walk patients through a whole month to help them understand how that works.”
Another option, the NuvaRing, is notable because it’s linked to low amounts of breakthrough bleeding Abel noted. An extended form is now available that doesn’t need to be removed during menstrual periods.
Medroxyprogesterone injections, which are linked to bone loss, and subdermal implants, which may be less effective in women over 130% of their ideal weight are also available, she said.
Finally, IUDs are an option, although when they fail, they’re linked to ectopic pregnancies.
Abel has no disclosures.
Rising Cancer Rates Among Young People Spur New Fertility Preservation Options
Rising Cancer Rates Among Young People Spur New Fertility Preservation Options
ATLANTA —Jacqueline Lee, MD, a reproductive endocrinologist at Emory School of Medicine, frequently treats patients with cancer. Recently, she treated 4 women in their 30s with histories of colon cancer, acute lymphoblastic leukemia, lymphoma, and breast cancer. A young man in his 20s sought her care, to discuss his case of lymphoma.
All these patients sought guidance from Lee because they want to protect their ability to have children. At the annual meeting of the Association of VA Hematology/Oncology, Lee explained that plenty of patients are finding themselves in similar straits due in part to recent trends.
Cancer rates in the US have been rising among people aged 15 to 39 years, who now account for 4.2% of all cancer cases. An estimated 84,100 people in this age group are expected to be diagnosed with cancer this year. Meanwhile, women are having children later in life-birth rates are up among those aged 25 to 49 years-making it more likely that they have histories of cancer.
Although it's difficult to predict how cancer will affect fertility, Lee emphasized that many chemotherapy medications, including cisplatin and carboplatin, are cytotoxic. "It's hard to always predict what someone's arc of care is going to be," she said, "so I really have a low threshold for recommending fertility preservation in patients who have a strong desire to have future childbearing."
For women with cancer, egg preservation isn't the only strategy. Clinicians can also try to protect ovarian tissue from pelvic radiation through surgical reposition of the ovaries, Lee noted. In addition goserelin, a hormone-suppressing therapy, may protect the ovaries from chemotherapy, though its effectiveness in boosting pregnancy rates is still unclear.
"When I mentioned this option, it's usually for patients who can't preserve fertility via egg or embryo preservation, or we don't have the luxury of that kind of time," Lee said. "I say that if helps at all, it might help you resume menses after treatment. But infertility is still very common."
For some patients, freezing eggs is an easy decision. "They don't have a reproductive partner they're ready to make embryos with, so we proceed with egg preservation. It's no longer considered experimental and comes with lower upfront costs since the costs of actually making embryos are deferred until the future."
In addition, she said, freezing eggs also avoids the touchy topic of disposing of embryos. Lee cautions patients that retrieving eggs is a 2-week process that requires any initiation of cancer care to be delayed. However, the retrieval process can be adjusted in patients with special needs due to the type of cancer they have.
For prepubertal girls with cancer, ovarian tissue can be removed and frozen as a fertility preservation option. However, this is not considered standard of care. "We don't do it," she said. "We refer out if needed. Hopefully we'll develop a program in the future."
As for the 5 patients that Lee mentioned, with details changed to protect their privacy, their outcomes were as follows:
- The woman with colon cancer, who had undergone a hemicolectomy, chose to defer fertility preservation.
- The woman with acute lymphoblastic leukemia, who was taking depo-Lupron, had undetectable anti-Müllerian hormone (AMH) levels. Lee discussed the possibility of IVF with a donor egg.
- The woman with breast cancer, who was newly diagnosed, deferred fertility preservation.
- The man with lymphoma (Hodgkin's), who was awaiting chemotherapy, had his sperm frozen.
- The woman with lymphoma (new diagnosis) had 27 eggs frozen.
Lee had no disclosures to report.
ATLANTA —Jacqueline Lee, MD, a reproductive endocrinologist at Emory School of Medicine, frequently treats patients with cancer. Recently, she treated 4 women in their 30s with histories of colon cancer, acute lymphoblastic leukemia, lymphoma, and breast cancer. A young man in his 20s sought her care, to discuss his case of lymphoma.
All these patients sought guidance from Lee because they want to protect their ability to have children. At the annual meeting of the Association of VA Hematology/Oncology, Lee explained that plenty of patients are finding themselves in similar straits due in part to recent trends.
Cancer rates in the US have been rising among people aged 15 to 39 years, who now account for 4.2% of all cancer cases. An estimated 84,100 people in this age group are expected to be diagnosed with cancer this year. Meanwhile, women are having children later in life-birth rates are up among those aged 25 to 49 years-making it more likely that they have histories of cancer.
Although it's difficult to predict how cancer will affect fertility, Lee emphasized that many chemotherapy medications, including cisplatin and carboplatin, are cytotoxic. "It's hard to always predict what someone's arc of care is going to be," she said, "so I really have a low threshold for recommending fertility preservation in patients who have a strong desire to have future childbearing."
For women with cancer, egg preservation isn't the only strategy. Clinicians can also try to protect ovarian tissue from pelvic radiation through surgical reposition of the ovaries, Lee noted. In addition goserelin, a hormone-suppressing therapy, may protect the ovaries from chemotherapy, though its effectiveness in boosting pregnancy rates is still unclear.
"When I mentioned this option, it's usually for patients who can't preserve fertility via egg or embryo preservation, or we don't have the luxury of that kind of time," Lee said. "I say that if helps at all, it might help you resume menses after treatment. But infertility is still very common."
For some patients, freezing eggs is an easy decision. "They don't have a reproductive partner they're ready to make embryos with, so we proceed with egg preservation. It's no longer considered experimental and comes with lower upfront costs since the costs of actually making embryos are deferred until the future."
In addition, she said, freezing eggs also avoids the touchy topic of disposing of embryos. Lee cautions patients that retrieving eggs is a 2-week process that requires any initiation of cancer care to be delayed. However, the retrieval process can be adjusted in patients with special needs due to the type of cancer they have.
For prepubertal girls with cancer, ovarian tissue can be removed and frozen as a fertility preservation option. However, this is not considered standard of care. "We don't do it," she said. "We refer out if needed. Hopefully we'll develop a program in the future."
As for the 5 patients that Lee mentioned, with details changed to protect their privacy, their outcomes were as follows:
- The woman with colon cancer, who had undergone a hemicolectomy, chose to defer fertility preservation.
- The woman with acute lymphoblastic leukemia, who was taking depo-Lupron, had undetectable anti-Müllerian hormone (AMH) levels. Lee discussed the possibility of IVF with a donor egg.
- The woman with breast cancer, who was newly diagnosed, deferred fertility preservation.
- The man with lymphoma (Hodgkin's), who was awaiting chemotherapy, had his sperm frozen.
- The woman with lymphoma (new diagnosis) had 27 eggs frozen.
Lee had no disclosures to report.
ATLANTA —Jacqueline Lee, MD, a reproductive endocrinologist at Emory School of Medicine, frequently treats patients with cancer. Recently, she treated 4 women in their 30s with histories of colon cancer, acute lymphoblastic leukemia, lymphoma, and breast cancer. A young man in his 20s sought her care, to discuss his case of lymphoma.
All these patients sought guidance from Lee because they want to protect their ability to have children. At the annual meeting of the Association of VA Hematology/Oncology, Lee explained that plenty of patients are finding themselves in similar straits due in part to recent trends.
Cancer rates in the US have been rising among people aged 15 to 39 years, who now account for 4.2% of all cancer cases. An estimated 84,100 people in this age group are expected to be diagnosed with cancer this year. Meanwhile, women are having children later in life-birth rates are up among those aged 25 to 49 years-making it more likely that they have histories of cancer.
Although it's difficult to predict how cancer will affect fertility, Lee emphasized that many chemotherapy medications, including cisplatin and carboplatin, are cytotoxic. "It's hard to always predict what someone's arc of care is going to be," she said, "so I really have a low threshold for recommending fertility preservation in patients who have a strong desire to have future childbearing."
For women with cancer, egg preservation isn't the only strategy. Clinicians can also try to protect ovarian tissue from pelvic radiation through surgical reposition of the ovaries, Lee noted. In addition goserelin, a hormone-suppressing therapy, may protect the ovaries from chemotherapy, though its effectiveness in boosting pregnancy rates is still unclear.
"When I mentioned this option, it's usually for patients who can't preserve fertility via egg or embryo preservation, or we don't have the luxury of that kind of time," Lee said. "I say that if helps at all, it might help you resume menses after treatment. But infertility is still very common."
For some patients, freezing eggs is an easy decision. "They don't have a reproductive partner they're ready to make embryos with, so we proceed with egg preservation. It's no longer considered experimental and comes with lower upfront costs since the costs of actually making embryos are deferred until the future."
In addition, she said, freezing eggs also avoids the touchy topic of disposing of embryos. Lee cautions patients that retrieving eggs is a 2-week process that requires any initiation of cancer care to be delayed. However, the retrieval process can be adjusted in patients with special needs due to the type of cancer they have.
For prepubertal girls with cancer, ovarian tissue can be removed and frozen as a fertility preservation option. However, this is not considered standard of care. "We don't do it," she said. "We refer out if needed. Hopefully we'll develop a program in the future."
As for the 5 patients that Lee mentioned, with details changed to protect their privacy, their outcomes were as follows:
- The woman with colon cancer, who had undergone a hemicolectomy, chose to defer fertility preservation.
- The woman with acute lymphoblastic leukemia, who was taking depo-Lupron, had undetectable anti-Müllerian hormone (AMH) levels. Lee discussed the possibility of IVF with a donor egg.
- The woman with breast cancer, who was newly diagnosed, deferred fertility preservation.
- The man with lymphoma (Hodgkin's), who was awaiting chemotherapy, had his sperm frozen.
- The woman with lymphoma (new diagnosis) had 27 eggs frozen.
Lee had no disclosures to report.
Rising Cancer Rates Among Young People Spur New Fertility Preservation Options
Rising Cancer Rates Among Young People Spur New Fertility Preservation Options
Military Background Shapes Eating Disorders in VA Oncology
Military Background Shapes Eating Disorders in VA Oncology
PHOENIX – Veterans are especially vulnerable to disordered eating because of their military backgrounds, a dietician warned US Department of Veterans Affairs (VA) oncology clinicians at the annual meeting of the Association of VA Hematology/Oncology. In fact, an estimated 15% to 25% of veterans meet diagnostic criteria for eating disorders.
“Their experience in the military probably has really shaped the way that they see weight and the stigma behind it,” said Emily Fasciana, MS, RDN, LDN, a registered dietician with the VA based in Wilkes-Barre, Pennsylvania.
When cancer appears, the risk of eating disorders goes up even more, she said. “If we don’t catch eating disorders early on, severe medical problems can occur. In the cancer population, they’re going through enough medical problems as it is.”
Here are things to know about eating disorders in oncology.
Military Life Can Produce a ‘Perfect Storm’ of Risk Factors
Tightly controlled eating environments and food deprivation are often routine in military life. Along with trauma, these can create a “perfect storm of risk factors for eating disorders,” Fasciana said.
During service, for example, “people often will eat as much as they can when they can, sometimes followed by days of not being able to eat,” she said. These are very much like disordered eating behaviors such as binge eating and restricting, and they can place veterans at greater risk.”
She described how service members can develop specific eating patterns during service, such as “midrats” – midnight rations – “meals served during midnight shifts that were the best meal served all day long that they had access to.”
“When I hear veterans who wake up in the middle of the night, and they’re eating, I ask: ‘Did they practice something similar during their military experience?’ They associate that time of the day with enjoyable comfort foods, and that’s what they go to now.”
Vets Can be Haunted by Stigma of Excess Weight
“Making weight” – meeting weight standards – is routine in the military. The pressure to remain under a certain level can have lasting effects on how veterans think about extra pounds, said Kaitlin Ohde, PhD, a clinical health psychologist with the VA Puget Sound Health Care System in Seattle.
“I’ve heard some veterans tell me about getting kicked out of positions because of not being able to make weight. Then they carry this throughout their life, which is really sad,” Ohde said. “When they gain weight during treatment, sometimes it can be really bothersome for them.”
Regular weigh-ins can trouble patients, she said, so it’s important to explain to them why they’re getting on scales: “I’m getting your weight today because I want to see if this medication is doing XYZ.”
She advised colleagues to “make sure they explicitly know why we’re doing it [measuring weight], and how the things we’re using to treat them can impact their weight. This piece of the puzzle sometimes falls off the radar.”
Eating Disorders Can be Catastrophic in Cancer
Untreated eating disorders cause severe medical complications such as malnutrition, hormone dysregulation, low bone density or fractures, bradycardia, gastroparesis, and even anemia, Fasciana said.
There’s a New Category of Eating Disorder
Fasciana highlighted a condition that is underrecognized in oncology: Avoidant/restrictive food intake disorder (ARFID), which refers to patients who stay away from certain foods but not because they’re worried about body image or weight gain. “Patients with ARFID are clinically distinct from those who have anorexia, bulimia, and binge eating disorder,” she noted.
ARFID diagnosis requires food avoidance that leads to at least 1 of these consequences: significant weight loss, nutritional deficiencies, dependence on supplements or tube feeding, or psychosocial impairment.
“Veterans might have a gagging or retching reflex at the sight or smell of certain foods,” Fasciana explained. “They might have difficulty being in the presence of another person eating a nonpreferred food.”
Some cancer patients may be averse to foods of certain temperatures. “You might need to assess why they don’t like the temperature of that food. Why are those foods something that you can’t go to? Are they hurting your teeth? What are they doing to you?”
ARFID patients may also experience social withdrawal around eating. “With a lot of our head and neck cancer patients, especially those with oral cancers and those on feeding tubes, they might feel embarrassed to be around people while eating,” Fasciana said.
She highlighted a 2021 report about 4 cancer survivors with upper abdominal cancers who developed new-onset eating disorders with malnutrition resembling ARFID.
The patients experienced malabsorption, dumping syndrome, and excessive weight loss for 12 months postoperatively without classic body-image concerns. “This is a case example of how eating disorders can evolve in the oncology population,” Fasciana said.
The report said that none of the patients “returned to a healthy weight and/or healthy eating despite extensive team input… The outcomes were poor; 1 patient died, another required admission to a specialist eating disorder admission with a subsequent relapsing-remitting course, and the remaining 2 had complicated chronic courses.”
Treatment: Start With Screening, Then Reframe Thinking
Fasciana highlighted several screening tools, such as SCOFF, BREDS, and one for ARFID.
“Any screen is going to be better than no screen at all, and any question is going to be better than no question at all,” Fasciana said.
She cautioned that “veterans are not going to be so forthcoming about some of their struggles due to stigma and shame because of their past experiences in the military.”
As for therapy, psychological care may not be required, Ohde said. And it’s especially important to “listen to your patients about what they’re going through, and give them space to share.”
For those who could be helped by psychotherapy, she said, “sometimes I introduce it as therapy that can be really brief. Maybe you just need to talk to someone for a few sessions or just get some support around coping with this.”
One strategy is to focus on bringing enjoyment back to eating, she said. For some patients, “eating becomes a chore,” a task performed without joy, alone in a hospital room.
Fasciana emphasized asking questions over time, perhaps through multiple follow-ups, without expecting answers immediately. And she coaxes patients to consider what they hold dear. “I try to get them to think about the meaning that losing or gaining weight has for them, what their values are, and what really matters to them. I link it back to health, healing, and longevity of life.”
Fasciana and Ohde reported they had no disclosures.
PHOENIX – Veterans are especially vulnerable to disordered eating because of their military backgrounds, a dietician warned US Department of Veterans Affairs (VA) oncology clinicians at the annual meeting of the Association of VA Hematology/Oncology. In fact, an estimated 15% to 25% of veterans meet diagnostic criteria for eating disorders.
“Their experience in the military probably has really shaped the way that they see weight and the stigma behind it,” said Emily Fasciana, MS, RDN, LDN, a registered dietician with the VA based in Wilkes-Barre, Pennsylvania.
When cancer appears, the risk of eating disorders goes up even more, she said. “If we don’t catch eating disorders early on, severe medical problems can occur. In the cancer population, they’re going through enough medical problems as it is.”
Here are things to know about eating disorders in oncology.
Military Life Can Produce a ‘Perfect Storm’ of Risk Factors
Tightly controlled eating environments and food deprivation are often routine in military life. Along with trauma, these can create a “perfect storm of risk factors for eating disorders,” Fasciana said.
During service, for example, “people often will eat as much as they can when they can, sometimes followed by days of not being able to eat,” she said. These are very much like disordered eating behaviors such as binge eating and restricting, and they can place veterans at greater risk.”
She described how service members can develop specific eating patterns during service, such as “midrats” – midnight rations – “meals served during midnight shifts that were the best meal served all day long that they had access to.”
“When I hear veterans who wake up in the middle of the night, and they’re eating, I ask: ‘Did they practice something similar during their military experience?’ They associate that time of the day with enjoyable comfort foods, and that’s what they go to now.”
Vets Can be Haunted by Stigma of Excess Weight
“Making weight” – meeting weight standards – is routine in the military. The pressure to remain under a certain level can have lasting effects on how veterans think about extra pounds, said Kaitlin Ohde, PhD, a clinical health psychologist with the VA Puget Sound Health Care System in Seattle.
“I’ve heard some veterans tell me about getting kicked out of positions because of not being able to make weight. Then they carry this throughout their life, which is really sad,” Ohde said. “When they gain weight during treatment, sometimes it can be really bothersome for them.”
Regular weigh-ins can trouble patients, she said, so it’s important to explain to them why they’re getting on scales: “I’m getting your weight today because I want to see if this medication is doing XYZ.”
She advised colleagues to “make sure they explicitly know why we’re doing it [measuring weight], and how the things we’re using to treat them can impact their weight. This piece of the puzzle sometimes falls off the radar.”
Eating Disorders Can be Catastrophic in Cancer
Untreated eating disorders cause severe medical complications such as malnutrition, hormone dysregulation, low bone density or fractures, bradycardia, gastroparesis, and even anemia, Fasciana said.
There’s a New Category of Eating Disorder
Fasciana highlighted a condition that is underrecognized in oncology: Avoidant/restrictive food intake disorder (ARFID), which refers to patients who stay away from certain foods but not because they’re worried about body image or weight gain. “Patients with ARFID are clinically distinct from those who have anorexia, bulimia, and binge eating disorder,” she noted.
ARFID diagnosis requires food avoidance that leads to at least 1 of these consequences: significant weight loss, nutritional deficiencies, dependence on supplements or tube feeding, or psychosocial impairment.
“Veterans might have a gagging or retching reflex at the sight or smell of certain foods,” Fasciana explained. “They might have difficulty being in the presence of another person eating a nonpreferred food.”
Some cancer patients may be averse to foods of certain temperatures. “You might need to assess why they don’t like the temperature of that food. Why are those foods something that you can’t go to? Are they hurting your teeth? What are they doing to you?”
ARFID patients may also experience social withdrawal around eating. “With a lot of our head and neck cancer patients, especially those with oral cancers and those on feeding tubes, they might feel embarrassed to be around people while eating,” Fasciana said.
She highlighted a 2021 report about 4 cancer survivors with upper abdominal cancers who developed new-onset eating disorders with malnutrition resembling ARFID.
The patients experienced malabsorption, dumping syndrome, and excessive weight loss for 12 months postoperatively without classic body-image concerns. “This is a case example of how eating disorders can evolve in the oncology population,” Fasciana said.
The report said that none of the patients “returned to a healthy weight and/or healthy eating despite extensive team input… The outcomes were poor; 1 patient died, another required admission to a specialist eating disorder admission with a subsequent relapsing-remitting course, and the remaining 2 had complicated chronic courses.”
Treatment: Start With Screening, Then Reframe Thinking
Fasciana highlighted several screening tools, such as SCOFF, BREDS, and one for ARFID.
“Any screen is going to be better than no screen at all, and any question is going to be better than no question at all,” Fasciana said.
She cautioned that “veterans are not going to be so forthcoming about some of their struggles due to stigma and shame because of their past experiences in the military.”
As for therapy, psychological care may not be required, Ohde said. And it’s especially important to “listen to your patients about what they’re going through, and give them space to share.”
For those who could be helped by psychotherapy, she said, “sometimes I introduce it as therapy that can be really brief. Maybe you just need to talk to someone for a few sessions or just get some support around coping with this.”
One strategy is to focus on bringing enjoyment back to eating, she said. For some patients, “eating becomes a chore,” a task performed without joy, alone in a hospital room.
Fasciana emphasized asking questions over time, perhaps through multiple follow-ups, without expecting answers immediately. And she coaxes patients to consider what they hold dear. “I try to get them to think about the meaning that losing or gaining weight has for them, what their values are, and what really matters to them. I link it back to health, healing, and longevity of life.”
Fasciana and Ohde reported they had no disclosures.
PHOENIX – Veterans are especially vulnerable to disordered eating because of their military backgrounds, a dietician warned US Department of Veterans Affairs (VA) oncology clinicians at the annual meeting of the Association of VA Hematology/Oncology. In fact, an estimated 15% to 25% of veterans meet diagnostic criteria for eating disorders.
“Their experience in the military probably has really shaped the way that they see weight and the stigma behind it,” said Emily Fasciana, MS, RDN, LDN, a registered dietician with the VA based in Wilkes-Barre, Pennsylvania.
When cancer appears, the risk of eating disorders goes up even more, she said. “If we don’t catch eating disorders early on, severe medical problems can occur. In the cancer population, they’re going through enough medical problems as it is.”
Here are things to know about eating disorders in oncology.
Military Life Can Produce a ‘Perfect Storm’ of Risk Factors
Tightly controlled eating environments and food deprivation are often routine in military life. Along with trauma, these can create a “perfect storm of risk factors for eating disorders,” Fasciana said.
During service, for example, “people often will eat as much as they can when they can, sometimes followed by days of not being able to eat,” she said. These are very much like disordered eating behaviors such as binge eating and restricting, and they can place veterans at greater risk.”
She described how service members can develop specific eating patterns during service, such as “midrats” – midnight rations – “meals served during midnight shifts that were the best meal served all day long that they had access to.”
“When I hear veterans who wake up in the middle of the night, and they’re eating, I ask: ‘Did they practice something similar during their military experience?’ They associate that time of the day with enjoyable comfort foods, and that’s what they go to now.”
Vets Can be Haunted by Stigma of Excess Weight
“Making weight” – meeting weight standards – is routine in the military. The pressure to remain under a certain level can have lasting effects on how veterans think about extra pounds, said Kaitlin Ohde, PhD, a clinical health psychologist with the VA Puget Sound Health Care System in Seattle.
“I’ve heard some veterans tell me about getting kicked out of positions because of not being able to make weight. Then they carry this throughout their life, which is really sad,” Ohde said. “When they gain weight during treatment, sometimes it can be really bothersome for them.”
Regular weigh-ins can trouble patients, she said, so it’s important to explain to them why they’re getting on scales: “I’m getting your weight today because I want to see if this medication is doing XYZ.”
She advised colleagues to “make sure they explicitly know why we’re doing it [measuring weight], and how the things we’re using to treat them can impact their weight. This piece of the puzzle sometimes falls off the radar.”
Eating Disorders Can be Catastrophic in Cancer
Untreated eating disorders cause severe medical complications such as malnutrition, hormone dysregulation, low bone density or fractures, bradycardia, gastroparesis, and even anemia, Fasciana said.
There’s a New Category of Eating Disorder
Fasciana highlighted a condition that is underrecognized in oncology: Avoidant/restrictive food intake disorder (ARFID), which refers to patients who stay away from certain foods but not because they’re worried about body image or weight gain. “Patients with ARFID are clinically distinct from those who have anorexia, bulimia, and binge eating disorder,” she noted.
ARFID diagnosis requires food avoidance that leads to at least 1 of these consequences: significant weight loss, nutritional deficiencies, dependence on supplements or tube feeding, or psychosocial impairment.
“Veterans might have a gagging or retching reflex at the sight or smell of certain foods,” Fasciana explained. “They might have difficulty being in the presence of another person eating a nonpreferred food.”
Some cancer patients may be averse to foods of certain temperatures. “You might need to assess why they don’t like the temperature of that food. Why are those foods something that you can’t go to? Are they hurting your teeth? What are they doing to you?”
ARFID patients may also experience social withdrawal around eating. “With a lot of our head and neck cancer patients, especially those with oral cancers and those on feeding tubes, they might feel embarrassed to be around people while eating,” Fasciana said.
She highlighted a 2021 report about 4 cancer survivors with upper abdominal cancers who developed new-onset eating disorders with malnutrition resembling ARFID.
The patients experienced malabsorption, dumping syndrome, and excessive weight loss for 12 months postoperatively without classic body-image concerns. “This is a case example of how eating disorders can evolve in the oncology population,” Fasciana said.
The report said that none of the patients “returned to a healthy weight and/or healthy eating despite extensive team input… The outcomes were poor; 1 patient died, another required admission to a specialist eating disorder admission with a subsequent relapsing-remitting course, and the remaining 2 had complicated chronic courses.”
Treatment: Start With Screening, Then Reframe Thinking
Fasciana highlighted several screening tools, such as SCOFF, BREDS, and one for ARFID.
“Any screen is going to be better than no screen at all, and any question is going to be better than no question at all,” Fasciana said.
She cautioned that “veterans are not going to be so forthcoming about some of their struggles due to stigma and shame because of their past experiences in the military.”
As for therapy, psychological care may not be required, Ohde said. And it’s especially important to “listen to your patients about what they’re going through, and give them space to share.”
For those who could be helped by psychotherapy, she said, “sometimes I introduce it as therapy that can be really brief. Maybe you just need to talk to someone for a few sessions or just get some support around coping with this.”
One strategy is to focus on bringing enjoyment back to eating, she said. For some patients, “eating becomes a chore,” a task performed without joy, alone in a hospital room.
Fasciana emphasized asking questions over time, perhaps through multiple follow-ups, without expecting answers immediately. And she coaxes patients to consider what they hold dear. “I try to get them to think about the meaning that losing or gaining weight has for them, what their values are, and what really matters to them. I link it back to health, healing, and longevity of life.”
Fasciana and Ohde reported they had no disclosures.
Military Background Shapes Eating Disorders in VA Oncology
Military Background Shapes Eating Disorders in VA Oncology
Don't Treat Investigational Cancer Drugs Like Other Medications
Don't Treat Investigational Cancer Drugs Like Other Medications
PHOENIX – Medications used in oncology clinical trials pose unique challenges in areas such as labeling, packaging, and administration, a US Department of Veterans Affairs (VA) pharmacist cautioned colleagues, and placebos have special needs too.
Even basic safety protections can be lacking when a drug is investigational, said Emily Hennes, PharmD, BCOP, clinical pharmacy specialist for research at William S. Middleton Memorial Veterans Hospital in Shorewood Hills, Wisconsin, in a presentation at the annual meeting of the Association of VA Hematology/Oncology.
“All of the safety features that we have come to know and love in dispensing commercial drugs are absent. There’s no Tall Man lettering, there's no color differentiation, and there's no barcoding, because these are not registered drugs," she said.
A 2017 report found that 81% of pharmacists surveyed indicated some level of concern regarding the safety risk in using investigational drugs. At the same time, Hennes noted, the Joint Commission has mandated that pharmacists must control the storage, dispensing, labeling, and distribution of investigational medications.
Here are things to know about the use of investigational cancer drugs:
Drug Interactions Are Common
Hennes highlighted a 2023 study of medication reconciliation of 501 patients in 79 clinical trials that found alarming levels of drug interactions:
• 360 clinically relevant drug-drug interactions were identified among 189 patients, including 158 therapies that were prohibited by protocols. Of these, 57.7% involved cytochrome P450 enzymes, which are involved in metabolism.
• Reconciliation revealed that 35.2% of medications were not otherwise known or documented.
• A median of 2 previously unknown therapies per patient was discovered in 74% of patients.
• Alternative medicine products such as supplements and over-the-counter drugs were implicated in 60% of identified drug interactions.
• Only 41% of oncologists discussed alternative medicine use with patients, which Hennes attributed to “lack of familiarity with many alternative medicine products or insufficient training.”
To make things more complicated, “We sometimes don’t know the full pharmacokinetic and pharmacodynamic profile of an investigational agent,” she said.
Naming and Labeling May Not Be Standard
Investigational products may not have genetic names and instead have an alphanumeric identifier such as INV54826 that can be quite similar to other products, she said. Investigational drugs may even go through name changes, forcing pharmacists to be alerted to protect patients.
In addition, labeling may not be standardized. Drugs may arrive unlabeled, with the wrong volume and size, and lack of barcoding. In some cases, pharmacists choose to put new, patient-friendly labels on these products, Hennes said.
Information Distribution is Key
“Something that comes up in our practice quite a bit is that there’s no standard drug reference regarding investigational drugs,” Hennes said. “Finding ways to get key information to staff at the point of care is really critical to make sure we’re able to safely treat our patients.”
Precautions May Be Needed to Maintain Blinding Protocols
Hennes explained that pharmacists must use opaque brown bag covers to maintain blinding when parenteral products have distinctive colors. Lines may have to be covered too, which can create challenges during administration.
“Pumps aren’t meant to run lines that are covered,” she said, which can lead to jams. “If you don’t do education with your point of care staff, it can cause a lot of confusion.”
It’s also important for blinding purposes to keep an eye on how long it takes to prepare a treatment, she said. A study’s integrity, for example, could be violated if a complex investigational product takes an hour to equilibrate to room temperature and 20-30 minutes to prepare, while a placebo only requires “drawing a few mils of saline out of a bag and labeling it.”
Education for Patients Can Be Useful
Hennes urged colleagues to remind patients to save investigational medication at the end of each cycle and return it to the clinic site for accountability.
She also suggested creating treatment calendars/reminders for patients and discussing
Hennes reported no disclosures.
PHOENIX – Medications used in oncology clinical trials pose unique challenges in areas such as labeling, packaging, and administration, a US Department of Veterans Affairs (VA) pharmacist cautioned colleagues, and placebos have special needs too.
Even basic safety protections can be lacking when a drug is investigational, said Emily Hennes, PharmD, BCOP, clinical pharmacy specialist for research at William S. Middleton Memorial Veterans Hospital in Shorewood Hills, Wisconsin, in a presentation at the annual meeting of the Association of VA Hematology/Oncology.
“All of the safety features that we have come to know and love in dispensing commercial drugs are absent. There’s no Tall Man lettering, there's no color differentiation, and there's no barcoding, because these are not registered drugs," she said.
A 2017 report found that 81% of pharmacists surveyed indicated some level of concern regarding the safety risk in using investigational drugs. At the same time, Hennes noted, the Joint Commission has mandated that pharmacists must control the storage, dispensing, labeling, and distribution of investigational medications.
Here are things to know about the use of investigational cancer drugs:
Drug Interactions Are Common
Hennes highlighted a 2023 study of medication reconciliation of 501 patients in 79 clinical trials that found alarming levels of drug interactions:
• 360 clinically relevant drug-drug interactions were identified among 189 patients, including 158 therapies that were prohibited by protocols. Of these, 57.7% involved cytochrome P450 enzymes, which are involved in metabolism.
• Reconciliation revealed that 35.2% of medications were not otherwise known or documented.
• A median of 2 previously unknown therapies per patient was discovered in 74% of patients.
• Alternative medicine products such as supplements and over-the-counter drugs were implicated in 60% of identified drug interactions.
• Only 41% of oncologists discussed alternative medicine use with patients, which Hennes attributed to “lack of familiarity with many alternative medicine products or insufficient training.”
To make things more complicated, “We sometimes don’t know the full pharmacokinetic and pharmacodynamic profile of an investigational agent,” she said.
Naming and Labeling May Not Be Standard
Investigational products may not have genetic names and instead have an alphanumeric identifier such as INV54826 that can be quite similar to other products, she said. Investigational drugs may even go through name changes, forcing pharmacists to be alerted to protect patients.
In addition, labeling may not be standardized. Drugs may arrive unlabeled, with the wrong volume and size, and lack of barcoding. In some cases, pharmacists choose to put new, patient-friendly labels on these products, Hennes said.
Information Distribution is Key
“Something that comes up in our practice quite a bit is that there’s no standard drug reference regarding investigational drugs,” Hennes said. “Finding ways to get key information to staff at the point of care is really critical to make sure we’re able to safely treat our patients.”
Precautions May Be Needed to Maintain Blinding Protocols
Hennes explained that pharmacists must use opaque brown bag covers to maintain blinding when parenteral products have distinctive colors. Lines may have to be covered too, which can create challenges during administration.
“Pumps aren’t meant to run lines that are covered,” she said, which can lead to jams. “If you don’t do education with your point of care staff, it can cause a lot of confusion.”
It’s also important for blinding purposes to keep an eye on how long it takes to prepare a treatment, she said. A study’s integrity, for example, could be violated if a complex investigational product takes an hour to equilibrate to room temperature and 20-30 minutes to prepare, while a placebo only requires “drawing a few mils of saline out of a bag and labeling it.”
Education for Patients Can Be Useful
Hennes urged colleagues to remind patients to save investigational medication at the end of each cycle and return it to the clinic site for accountability.
She also suggested creating treatment calendars/reminders for patients and discussing
Hennes reported no disclosures.
PHOENIX – Medications used in oncology clinical trials pose unique challenges in areas such as labeling, packaging, and administration, a US Department of Veterans Affairs (VA) pharmacist cautioned colleagues, and placebos have special needs too.
Even basic safety protections can be lacking when a drug is investigational, said Emily Hennes, PharmD, BCOP, clinical pharmacy specialist for research at William S. Middleton Memorial Veterans Hospital in Shorewood Hills, Wisconsin, in a presentation at the annual meeting of the Association of VA Hematology/Oncology.
“All of the safety features that we have come to know and love in dispensing commercial drugs are absent. There’s no Tall Man lettering, there's no color differentiation, and there's no barcoding, because these are not registered drugs," she said.
A 2017 report found that 81% of pharmacists surveyed indicated some level of concern regarding the safety risk in using investigational drugs. At the same time, Hennes noted, the Joint Commission has mandated that pharmacists must control the storage, dispensing, labeling, and distribution of investigational medications.
Here are things to know about the use of investigational cancer drugs:
Drug Interactions Are Common
Hennes highlighted a 2023 study of medication reconciliation of 501 patients in 79 clinical trials that found alarming levels of drug interactions:
• 360 clinically relevant drug-drug interactions were identified among 189 patients, including 158 therapies that were prohibited by protocols. Of these, 57.7% involved cytochrome P450 enzymes, which are involved in metabolism.
• Reconciliation revealed that 35.2% of medications were not otherwise known or documented.
• A median of 2 previously unknown therapies per patient was discovered in 74% of patients.
• Alternative medicine products such as supplements and over-the-counter drugs were implicated in 60% of identified drug interactions.
• Only 41% of oncologists discussed alternative medicine use with patients, which Hennes attributed to “lack of familiarity with many alternative medicine products or insufficient training.”
To make things more complicated, “We sometimes don’t know the full pharmacokinetic and pharmacodynamic profile of an investigational agent,” she said.
Naming and Labeling May Not Be Standard
Investigational products may not have genetic names and instead have an alphanumeric identifier such as INV54826 that can be quite similar to other products, she said. Investigational drugs may even go through name changes, forcing pharmacists to be alerted to protect patients.
In addition, labeling may not be standardized. Drugs may arrive unlabeled, with the wrong volume and size, and lack of barcoding. In some cases, pharmacists choose to put new, patient-friendly labels on these products, Hennes said.
Information Distribution is Key
“Something that comes up in our practice quite a bit is that there’s no standard drug reference regarding investigational drugs,” Hennes said. “Finding ways to get key information to staff at the point of care is really critical to make sure we’re able to safely treat our patients.”
Precautions May Be Needed to Maintain Blinding Protocols
Hennes explained that pharmacists must use opaque brown bag covers to maintain blinding when parenteral products have distinctive colors. Lines may have to be covered too, which can create challenges during administration.
“Pumps aren’t meant to run lines that are covered,” she said, which can lead to jams. “If you don’t do education with your point of care staff, it can cause a lot of confusion.”
It’s also important for blinding purposes to keep an eye on how long it takes to prepare a treatment, she said. A study’s integrity, for example, could be violated if a complex investigational product takes an hour to equilibrate to room temperature and 20-30 minutes to prepare, while a placebo only requires “drawing a few mils of saline out of a bag and labeling it.”
Education for Patients Can Be Useful
Hennes urged colleagues to remind patients to save investigational medication at the end of each cycle and return it to the clinic site for accountability.
She also suggested creating treatment calendars/reminders for patients and discussing
Hennes reported no disclosures.
Don't Treat Investigational Cancer Drugs Like Other Medications
Don't Treat Investigational Cancer Drugs Like Other Medications
Architect of VA Transformation Urges Innovation Amid Uncertainty
Architect of VA Transformation Urges Innovation Amid Uncertainty
PHOENIX – Three decades after he initiated the transformation of the Veterans Health Administration (VHA) into a model research and clinical health care system, former US Department of Veterans Affairs (VA) Under Secretary of Health Kenneth W. Kizer, MD, MPH, urged cancer specialists to embrace this challenging moment as an opportunity for bold innovation.
At the annual meeting of the Association of VA Hematology/Oncology (AVAHO), Kizer acknowledged that the VA faces an “uncertain and turbulent time” in areas such as funding, staffing, community care implementation, and the rollout of a new electronic health record system.
He also noted the grim rise of global instability, economic turmoil, climate change, infectious diseases, political violence, and mass shootings.
“This can be stressful. It can create negative energy. But this uncertainty can also be liberating, and it can prompt positive energy and innovation, depending on choices that we make,” said Kizer, who also has served as California’s top health official prior to leading the VHA from 1994 to 1999.
From “Bloated Bureaucracy’ to High-Quality Health Care System
Kizer has been credited with revitalizing VHA care through a greater commitment to quality, and harkened to his work with the VA as an example of how bold goals can lead to bold innovation.
“What were the perceptions of VA health care in 1994? Well, they weren’t very good, frankly,” Kizer recalled. He described the VA as having a reputation at that time as “highly dysfunctional” with “a very bloated and entrenched bureaucracy.” As for quality of care, it “wasn’t viewed as very good.”
The system’s problems were so severe that patients would park motorhomes in VA medical center parking lots as they waited for care. “While they might have an appointment for one day, they may not be seen for 3 or 4 or 5 days. So they would stay in their motorhome until they finally got into their clinic appointment,” Kizer said.
Overall, “the public viewed the VA as this bleak backwater of incompetence and difference and inefficiency, and there were very strong calls to privatize the VA,” Kizer said.
Kizer asked colleagues about what he should do after he was asked to take the under secretary job. “With one exception, they all said, don’t go near it. Don’t touch it. Walk away. That it’s impossible to change the organization.
“I looked at the VA and I saw an opportunity. When I told [members of the President Bill] Clinton [Administration] yes, my bold aim was that I would like to pursue this was to make VHA a model of excellent health care, an exemplary health care system. Most everyone else thought that I was totally delusional, but sometimes it’s good to be delusional.”
Revolutionary Changes Despite Opposition
Kizer sought reforms in 5 major strategic objectives, all without explicit congressional approval: creating an accountable management structure, decentralizing decision-making, integrating care, implementing universal primary care, and pursuing eligibility reform to create the current 8-tier VA system.
One major innovation was the implementation of community-based outpatient clinics (CBOCs): “Those were strongly opposed initially,” Kizer said. “Everyone, the veteran community in particular, had been led to believe that the only good care was in the hospital.”
The resistance was substantial. “There was a lot of opposition when we said we’re going to move out into the community where you live to make [care] easier to access,” Kizer said.
To make things more difficult, Congress wouldn’t fund the project: “For the first 3 years, every CBOC had to be funded by redirected savings from other things that we could do within the system,” he said. “All of this was through redirected savings and finding ways to save and reinvest.”
Innovation From the Ground Up
Kizer emphasized that many breakthrough innovations came from frontline staff rather than executive mandates. He cited the example of Barcode Medication Administration, which originated from a nurse in Topeka, Kan.
The nurse saw a barcode scanner put to work at a rental car company where it was used to check cars in and out. She wondered, “Why can’t we do this with medications when they’re given on the floor? We followed up on it, pursued those things, tested it out, it worked.”
The results were dramatic. “I was told at a meeting that they had achieved close to 80% reduction in medication errors,” Kizer said. After verifying the results personally, he “authorized $20 million, and we moved forward with it systemwide.”
This experience reinforced his belief in harvesting ideas from staff at all levels.
Innovation remains part of the VA’s culture “despite what some people would have you believe,” Kizer said. Recently, the VA has made major advances in areas such as patient transportation and the climate crisis, he said.
Inside the Recipe for Innovation
Boldness, persistence, adaptability, and tolerance for risk are necessary ingredients for high-risk goals, Kizer said. Ambition is also part of the picture.
He highlighted examples such as the Apollo moon landing, the first sub-4-minute mile, and the first swim across the English Channel by a woman.
In medicine, Kizer pointed to a national patient safety campaign that saved an estimated 122,000 lives. He also mentioned recent progress in organ transplantation such as recommendations from the National Academies of Sciences, Engineering, and Medicine to establish national performance goals and the Organ Procurement and Transplantation Network’s target of 60,000 deceased donor transplants by 2026.
Bold doesn’t mean being reckless or careless, Kizer said. “But it does require innovation. And it does require that you try some new things, some of which aren’t going to work out.”
The key mindset, he explained, is to “embrace the unknown” because “you often really don’t know how you will accomplish the aim when you start. But you’ll figure it out as you go.”
Kizer highlighted 2 opposing strategies to handling challenging times.
According to him, the “negative energy” approach focuses on frustrations, limitations, and asking “Why is this happening to me?”
In contrast, a “positive energy” approach expects problems, focuses on available resources and capabilities, and asks, “What are the opportunities that these changes are creating for me?”
Kizer made it crystal clear which option he prefers.
Dr. Kizer disclosed that his comments represent his opinions only, and he noted his ongoing connections to the VA.
PHOENIX – Three decades after he initiated the transformation of the Veterans Health Administration (VHA) into a model research and clinical health care system, former US Department of Veterans Affairs (VA) Under Secretary of Health Kenneth W. Kizer, MD, MPH, urged cancer specialists to embrace this challenging moment as an opportunity for bold innovation.
At the annual meeting of the Association of VA Hematology/Oncology (AVAHO), Kizer acknowledged that the VA faces an “uncertain and turbulent time” in areas such as funding, staffing, community care implementation, and the rollout of a new electronic health record system.
He also noted the grim rise of global instability, economic turmoil, climate change, infectious diseases, political violence, and mass shootings.
“This can be stressful. It can create negative energy. But this uncertainty can also be liberating, and it can prompt positive energy and innovation, depending on choices that we make,” said Kizer, who also has served as California’s top health official prior to leading the VHA from 1994 to 1999.
From “Bloated Bureaucracy’ to High-Quality Health Care System
Kizer has been credited with revitalizing VHA care through a greater commitment to quality, and harkened to his work with the VA as an example of how bold goals can lead to bold innovation.
“What were the perceptions of VA health care in 1994? Well, they weren’t very good, frankly,” Kizer recalled. He described the VA as having a reputation at that time as “highly dysfunctional” with “a very bloated and entrenched bureaucracy.” As for quality of care, it “wasn’t viewed as very good.”
The system’s problems were so severe that patients would park motorhomes in VA medical center parking lots as they waited for care. “While they might have an appointment for one day, they may not be seen for 3 or 4 or 5 days. So they would stay in their motorhome until they finally got into their clinic appointment,” Kizer said.
Overall, “the public viewed the VA as this bleak backwater of incompetence and difference and inefficiency, and there were very strong calls to privatize the VA,” Kizer said.
Kizer asked colleagues about what he should do after he was asked to take the under secretary job. “With one exception, they all said, don’t go near it. Don’t touch it. Walk away. That it’s impossible to change the organization.
“I looked at the VA and I saw an opportunity. When I told [members of the President Bill] Clinton [Administration] yes, my bold aim was that I would like to pursue this was to make VHA a model of excellent health care, an exemplary health care system. Most everyone else thought that I was totally delusional, but sometimes it’s good to be delusional.”
Revolutionary Changes Despite Opposition
Kizer sought reforms in 5 major strategic objectives, all without explicit congressional approval: creating an accountable management structure, decentralizing decision-making, integrating care, implementing universal primary care, and pursuing eligibility reform to create the current 8-tier VA system.
One major innovation was the implementation of community-based outpatient clinics (CBOCs): “Those were strongly opposed initially,” Kizer said. “Everyone, the veteran community in particular, had been led to believe that the only good care was in the hospital.”
The resistance was substantial. “There was a lot of opposition when we said we’re going to move out into the community where you live to make [care] easier to access,” Kizer said.
To make things more difficult, Congress wouldn’t fund the project: “For the first 3 years, every CBOC had to be funded by redirected savings from other things that we could do within the system,” he said. “All of this was through redirected savings and finding ways to save and reinvest.”
Innovation From the Ground Up
Kizer emphasized that many breakthrough innovations came from frontline staff rather than executive mandates. He cited the example of Barcode Medication Administration, which originated from a nurse in Topeka, Kan.
The nurse saw a barcode scanner put to work at a rental car company where it was used to check cars in and out. She wondered, “Why can’t we do this with medications when they’re given on the floor? We followed up on it, pursued those things, tested it out, it worked.”
The results were dramatic. “I was told at a meeting that they had achieved close to 80% reduction in medication errors,” Kizer said. After verifying the results personally, he “authorized $20 million, and we moved forward with it systemwide.”
This experience reinforced his belief in harvesting ideas from staff at all levels.
Innovation remains part of the VA’s culture “despite what some people would have you believe,” Kizer said. Recently, the VA has made major advances in areas such as patient transportation and the climate crisis, he said.
Inside the Recipe for Innovation
Boldness, persistence, adaptability, and tolerance for risk are necessary ingredients for high-risk goals, Kizer said. Ambition is also part of the picture.
He highlighted examples such as the Apollo moon landing, the first sub-4-minute mile, and the first swim across the English Channel by a woman.
In medicine, Kizer pointed to a national patient safety campaign that saved an estimated 122,000 lives. He also mentioned recent progress in organ transplantation such as recommendations from the National Academies of Sciences, Engineering, and Medicine to establish national performance goals and the Organ Procurement and Transplantation Network’s target of 60,000 deceased donor transplants by 2026.
Bold doesn’t mean being reckless or careless, Kizer said. “But it does require innovation. And it does require that you try some new things, some of which aren’t going to work out.”
The key mindset, he explained, is to “embrace the unknown” because “you often really don’t know how you will accomplish the aim when you start. But you’ll figure it out as you go.”
Kizer highlighted 2 opposing strategies to handling challenging times.
According to him, the “negative energy” approach focuses on frustrations, limitations, and asking “Why is this happening to me?”
In contrast, a “positive energy” approach expects problems, focuses on available resources and capabilities, and asks, “What are the opportunities that these changes are creating for me?”
Kizer made it crystal clear which option he prefers.
Dr. Kizer disclosed that his comments represent his opinions only, and he noted his ongoing connections to the VA.
PHOENIX – Three decades after he initiated the transformation of the Veterans Health Administration (VHA) into a model research and clinical health care system, former US Department of Veterans Affairs (VA) Under Secretary of Health Kenneth W. Kizer, MD, MPH, urged cancer specialists to embrace this challenging moment as an opportunity for bold innovation.
At the annual meeting of the Association of VA Hematology/Oncology (AVAHO), Kizer acknowledged that the VA faces an “uncertain and turbulent time” in areas such as funding, staffing, community care implementation, and the rollout of a new electronic health record system.
He also noted the grim rise of global instability, economic turmoil, climate change, infectious diseases, political violence, and mass shootings.
“This can be stressful. It can create negative energy. But this uncertainty can also be liberating, and it can prompt positive energy and innovation, depending on choices that we make,” said Kizer, who also has served as California’s top health official prior to leading the VHA from 1994 to 1999.
From “Bloated Bureaucracy’ to High-Quality Health Care System
Kizer has been credited with revitalizing VHA care through a greater commitment to quality, and harkened to his work with the VA as an example of how bold goals can lead to bold innovation.
“What were the perceptions of VA health care in 1994? Well, they weren’t very good, frankly,” Kizer recalled. He described the VA as having a reputation at that time as “highly dysfunctional” with “a very bloated and entrenched bureaucracy.” As for quality of care, it “wasn’t viewed as very good.”
The system’s problems were so severe that patients would park motorhomes in VA medical center parking lots as they waited for care. “While they might have an appointment for one day, they may not be seen for 3 or 4 or 5 days. So they would stay in their motorhome until they finally got into their clinic appointment,” Kizer said.
Overall, “the public viewed the VA as this bleak backwater of incompetence and difference and inefficiency, and there were very strong calls to privatize the VA,” Kizer said.
Kizer asked colleagues about what he should do after he was asked to take the under secretary job. “With one exception, they all said, don’t go near it. Don’t touch it. Walk away. That it’s impossible to change the organization.
“I looked at the VA and I saw an opportunity. When I told [members of the President Bill] Clinton [Administration] yes, my bold aim was that I would like to pursue this was to make VHA a model of excellent health care, an exemplary health care system. Most everyone else thought that I was totally delusional, but sometimes it’s good to be delusional.”
Revolutionary Changes Despite Opposition
Kizer sought reforms in 5 major strategic objectives, all without explicit congressional approval: creating an accountable management structure, decentralizing decision-making, integrating care, implementing universal primary care, and pursuing eligibility reform to create the current 8-tier VA system.
One major innovation was the implementation of community-based outpatient clinics (CBOCs): “Those were strongly opposed initially,” Kizer said. “Everyone, the veteran community in particular, had been led to believe that the only good care was in the hospital.”
The resistance was substantial. “There was a lot of opposition when we said we’re going to move out into the community where you live to make [care] easier to access,” Kizer said.
To make things more difficult, Congress wouldn’t fund the project: “For the first 3 years, every CBOC had to be funded by redirected savings from other things that we could do within the system,” he said. “All of this was through redirected savings and finding ways to save and reinvest.”
Innovation From the Ground Up
Kizer emphasized that many breakthrough innovations came from frontline staff rather than executive mandates. He cited the example of Barcode Medication Administration, which originated from a nurse in Topeka, Kan.
The nurse saw a barcode scanner put to work at a rental car company where it was used to check cars in and out. She wondered, “Why can’t we do this with medications when they’re given on the floor? We followed up on it, pursued those things, tested it out, it worked.”
The results were dramatic. “I was told at a meeting that they had achieved close to 80% reduction in medication errors,” Kizer said. After verifying the results personally, he “authorized $20 million, and we moved forward with it systemwide.”
This experience reinforced his belief in harvesting ideas from staff at all levels.
Innovation remains part of the VA’s culture “despite what some people would have you believe,” Kizer said. Recently, the VA has made major advances in areas such as patient transportation and the climate crisis, he said.
Inside the Recipe for Innovation
Boldness, persistence, adaptability, and tolerance for risk are necessary ingredients for high-risk goals, Kizer said. Ambition is also part of the picture.
He highlighted examples such as the Apollo moon landing, the first sub-4-minute mile, and the first swim across the English Channel by a woman.
In medicine, Kizer pointed to a national patient safety campaign that saved an estimated 122,000 lives. He also mentioned recent progress in organ transplantation such as recommendations from the National Academies of Sciences, Engineering, and Medicine to establish national performance goals and the Organ Procurement and Transplantation Network’s target of 60,000 deceased donor transplants by 2026.
Bold doesn’t mean being reckless or careless, Kizer said. “But it does require innovation. And it does require that you try some new things, some of which aren’t going to work out.”
The key mindset, he explained, is to “embrace the unknown” because “you often really don’t know how you will accomplish the aim when you start. But you’ll figure it out as you go.”
Kizer highlighted 2 opposing strategies to handling challenging times.
According to him, the “negative energy” approach focuses on frustrations, limitations, and asking “Why is this happening to me?”
In contrast, a “positive energy” approach expects problems, focuses on available resources and capabilities, and asks, “What are the opportunities that these changes are creating for me?”
Kizer made it crystal clear which option he prefers.
Dr. Kizer disclosed that his comments represent his opinions only, and he noted his ongoing connections to the VA.
Architect of VA Transformation Urges Innovation Amid Uncertainty
Architect of VA Transformation Urges Innovation Amid Uncertainty
Treating Metastatic RCC: From Risk Assessment to Therapy Selection
Treating Metastatic RCC: From Risk Assessment to Therapy Selection
Treatment of metastatic renal cell carcinoma (RCC) is complex and requires careful analysis of risk and treatment options, an oncologist said at the July Association of VA Hematology and Oncology (AVAHO) seminar in Long Beach, California, regarding treating veterans with kidney cancer.
“We’ve come a long way in treating this disease, but individualizing therapy remains critical, especially in complex populations like our veterans,” said Matthew B. Rettig, MD, chief of Hematology-Oncology at the Veterans Affairs Greater Los Angeles Healthcare System and professor of Medicine and Urology at UCLA.
Rettig emphasized 2 critical early questions clinicians should consider when encountering metastatic RCC. First: Can the patient be treated with localized interventions such as metastasectomy, radiation therapy, or nephrectomy? These can be curative, Rettig said.
And second: Does the patient currently need systemic therapy? “[There are] a small subset of patients,” Rettig said, “who go into a durable, complete remission, dare I say ‘cure,’ with immunotherapeutic-based approaches.”
Rettig highlighted the International Metastatic Renal Cell Carcinoma Database Consortium criteria as a guide for clinicians as they determine the best strategy for treatment. The Database Consortium estimates survival in various lines of therapy by incorporating 6 prognostic factors: anemia, hypercalcemia, neutrophilia, thrombocytosis, performance status, and time from diagnosis to treatment.
These criteria classify patients into favorable, intermediate, or poor risk categories that can guide first-line systemic therapy. The criteria also provide estimates of median survival.
Rettig noted a “huge percentage” of veterans mirror the intermediate-risk demographics of clinical trial cohorts but often present with greater comorbidity burdens: “That plays into whether we treat and how we treat,” he said.
Rettig highlighted kidney cancer guidelines from the National Comprehensive Cancer Network and noted that several trials examined first-line use of combinations of vascular endothelial growth factor receptor tyrosine kinase inhibitors (TKIs) and checkpoint inhibitors.
There’s a general theme in the findings, he said: “You have OS (overall survival) and PFS (progression-free survival) benefit in the intermediate/poor risk group, but only PFS benefit in the patients who have favorable-risk disease. And you see higher objective response rates with the combinations.
“If you have a patient who's highly symptomatic or has an organ system threatened by a metastasis, you'd want to use a combination that elicits a higher objective response rate,” Rettig added.
A TKI is going to be the most appropriate second-line therapy for patients who received a prior checkpoint inhibitor, Rettig said.
“Don't change to another checkpoint inhibitor,” he said. “We have enough phase 3 data that indicates checkpoint inhibitors are no longer really adding to benefit once they’ve had a checkpoint inhibitor.”
Rettig said to even consider checkpoint inhibitors for patients who are checkpoint inhibitor-naïve, especially given the potential for durable remissions. As for third-line therapy, he said, “we have both belzutifan and tivozanib, which have been shown to improve PFS. More studies are ongoing.”
There are many adverse events linked to TKIs, Rettig said, including cardiovascular problems, thrombosis, hypertension, heart failure, torsades de pointes, QT prolongation, and gastrointestinal toxicity. TKIs tend to be the major drivers of adverse events in combination therapy.
Rettig emphasized the shorter half-life of the TKI axitinib, which he said allows for easier management of toxicities: “That’s why it’s preferred in the VA RCC clinical pathway.”
Rettig discloses relationships with Ambrx, Amgen, AVEO, Bayer, INmune Bio, Johnson & Johnson Health Care Systems, Lantheus, Merck, Myovant, Novartis, ORIC, and Progenics.
Treatment of metastatic renal cell carcinoma (RCC) is complex and requires careful analysis of risk and treatment options, an oncologist said at the July Association of VA Hematology and Oncology (AVAHO) seminar in Long Beach, California, regarding treating veterans with kidney cancer.
“We’ve come a long way in treating this disease, but individualizing therapy remains critical, especially in complex populations like our veterans,” said Matthew B. Rettig, MD, chief of Hematology-Oncology at the Veterans Affairs Greater Los Angeles Healthcare System and professor of Medicine and Urology at UCLA.
Rettig emphasized 2 critical early questions clinicians should consider when encountering metastatic RCC. First: Can the patient be treated with localized interventions such as metastasectomy, radiation therapy, or nephrectomy? These can be curative, Rettig said.
And second: Does the patient currently need systemic therapy? “[There are] a small subset of patients,” Rettig said, “who go into a durable, complete remission, dare I say ‘cure,’ with immunotherapeutic-based approaches.”
Rettig highlighted the International Metastatic Renal Cell Carcinoma Database Consortium criteria as a guide for clinicians as they determine the best strategy for treatment. The Database Consortium estimates survival in various lines of therapy by incorporating 6 prognostic factors: anemia, hypercalcemia, neutrophilia, thrombocytosis, performance status, and time from diagnosis to treatment.
These criteria classify patients into favorable, intermediate, or poor risk categories that can guide first-line systemic therapy. The criteria also provide estimates of median survival.
Rettig noted a “huge percentage” of veterans mirror the intermediate-risk demographics of clinical trial cohorts but often present with greater comorbidity burdens: “That plays into whether we treat and how we treat,” he said.
Rettig highlighted kidney cancer guidelines from the National Comprehensive Cancer Network and noted that several trials examined first-line use of combinations of vascular endothelial growth factor receptor tyrosine kinase inhibitors (TKIs) and checkpoint inhibitors.
There’s a general theme in the findings, he said: “You have OS (overall survival) and PFS (progression-free survival) benefit in the intermediate/poor risk group, but only PFS benefit in the patients who have favorable-risk disease. And you see higher objective response rates with the combinations.
“If you have a patient who's highly symptomatic or has an organ system threatened by a metastasis, you'd want to use a combination that elicits a higher objective response rate,” Rettig added.
A TKI is going to be the most appropriate second-line therapy for patients who received a prior checkpoint inhibitor, Rettig said.
“Don't change to another checkpoint inhibitor,” he said. “We have enough phase 3 data that indicates checkpoint inhibitors are no longer really adding to benefit once they’ve had a checkpoint inhibitor.”
Rettig said to even consider checkpoint inhibitors for patients who are checkpoint inhibitor-naïve, especially given the potential for durable remissions. As for third-line therapy, he said, “we have both belzutifan and tivozanib, which have been shown to improve PFS. More studies are ongoing.”
There are many adverse events linked to TKIs, Rettig said, including cardiovascular problems, thrombosis, hypertension, heart failure, torsades de pointes, QT prolongation, and gastrointestinal toxicity. TKIs tend to be the major drivers of adverse events in combination therapy.
Rettig emphasized the shorter half-life of the TKI axitinib, which he said allows for easier management of toxicities: “That’s why it’s preferred in the VA RCC clinical pathway.”
Rettig discloses relationships with Ambrx, Amgen, AVEO, Bayer, INmune Bio, Johnson & Johnson Health Care Systems, Lantheus, Merck, Myovant, Novartis, ORIC, and Progenics.
Treatment of metastatic renal cell carcinoma (RCC) is complex and requires careful analysis of risk and treatment options, an oncologist said at the July Association of VA Hematology and Oncology (AVAHO) seminar in Long Beach, California, regarding treating veterans with kidney cancer.
“We’ve come a long way in treating this disease, but individualizing therapy remains critical, especially in complex populations like our veterans,” said Matthew B. Rettig, MD, chief of Hematology-Oncology at the Veterans Affairs Greater Los Angeles Healthcare System and professor of Medicine and Urology at UCLA.
Rettig emphasized 2 critical early questions clinicians should consider when encountering metastatic RCC. First: Can the patient be treated with localized interventions such as metastasectomy, radiation therapy, or nephrectomy? These can be curative, Rettig said.
And second: Does the patient currently need systemic therapy? “[There are] a small subset of patients,” Rettig said, “who go into a durable, complete remission, dare I say ‘cure,’ with immunotherapeutic-based approaches.”
Rettig highlighted the International Metastatic Renal Cell Carcinoma Database Consortium criteria as a guide for clinicians as they determine the best strategy for treatment. The Database Consortium estimates survival in various lines of therapy by incorporating 6 prognostic factors: anemia, hypercalcemia, neutrophilia, thrombocytosis, performance status, and time from diagnosis to treatment.
These criteria classify patients into favorable, intermediate, or poor risk categories that can guide first-line systemic therapy. The criteria also provide estimates of median survival.
Rettig noted a “huge percentage” of veterans mirror the intermediate-risk demographics of clinical trial cohorts but often present with greater comorbidity burdens: “That plays into whether we treat and how we treat,” he said.
Rettig highlighted kidney cancer guidelines from the National Comprehensive Cancer Network and noted that several trials examined first-line use of combinations of vascular endothelial growth factor receptor tyrosine kinase inhibitors (TKIs) and checkpoint inhibitors.
There’s a general theme in the findings, he said: “You have OS (overall survival) and PFS (progression-free survival) benefit in the intermediate/poor risk group, but only PFS benefit in the patients who have favorable-risk disease. And you see higher objective response rates with the combinations.
“If you have a patient who's highly symptomatic or has an organ system threatened by a metastasis, you'd want to use a combination that elicits a higher objective response rate,” Rettig added.
A TKI is going to be the most appropriate second-line therapy for patients who received a prior checkpoint inhibitor, Rettig said.
“Don't change to another checkpoint inhibitor,” he said. “We have enough phase 3 data that indicates checkpoint inhibitors are no longer really adding to benefit once they’ve had a checkpoint inhibitor.”
Rettig said to even consider checkpoint inhibitors for patients who are checkpoint inhibitor-naïve, especially given the potential for durable remissions. As for third-line therapy, he said, “we have both belzutifan and tivozanib, which have been shown to improve PFS. More studies are ongoing.”
There are many adverse events linked to TKIs, Rettig said, including cardiovascular problems, thrombosis, hypertension, heart failure, torsades de pointes, QT prolongation, and gastrointestinal toxicity. TKIs tend to be the major drivers of adverse events in combination therapy.
Rettig emphasized the shorter half-life of the TKI axitinib, which he said allows for easier management of toxicities: “That’s why it’s preferred in the VA RCC clinical pathway.”
Rettig discloses relationships with Ambrx, Amgen, AVEO, Bayer, INmune Bio, Johnson & Johnson Health Care Systems, Lantheus, Merck, Myovant, Novartis, ORIC, and Progenics.
Treating Metastatic RCC: From Risk Assessment to Therapy Selection
Treating Metastatic RCC: From Risk Assessment to Therapy Selection
Renal Cell Carcinoma: What You Need to Know About Hereditary Syndromes
Renal Cell Carcinoma: What You Need to Know About Hereditary Syndromes
The role of hereditary syndromes in renal cell carcinoma (RCC) might be easily missed, a kidney cancer specialist said during a recent Association of VA Hematology and Oncology (AVAHO) seminar in Long Beach, California, though careful clinical evaluation can uncover genetic traits that may affect treatment and familial risk.
“The importance of finding or identifying hereditary forms of kidney cancer really should not be underestimated,” said urologist Brian Shuch, MD, director of the UCLA Kidney Cancer Program, on treating veterans with kidney cancer.
According to Shuch, recent data suggest that about 4.5% of patients with RCC have a hereditary syndrome: “A lot of times, these hide in plain sight. You have to really look deep and try to figure things out and understand that maybe they have a hereditary form of kidney cancer.”
It is important to consider early genetic testing, Shuch said. Red flags for hereditary syndromes include early-onset RCC (age ≤ 45 years), multifocal tumors, bilateral tumors (especially in younger individuals), or a relevant family personal history, he said.
Unusual skin conditions are also potential signs, Shuch said. These can include leiomyomas, fibrofolliculomas, and angiofibromas: “Patients have lots of lumps or bumps.”
“When I look at a patient, I go head to toe and ask if there any issues with your vision, any issues with your hearing, any issues swallowing,” he explained at the meeting. “Do you have any problems with heart issues, adrenal issues? You’ve got to go through each organ, and it can lead you to different things.”
Shuch highlighted Von Hippel-Lindau (VHL) syndrome, which affects 1 in 25,000 people. About 80% to 90% of these patients have a family history, Shuch said.
But the others do not. “Unfortunately, some get diagnosed later in life because they don’t get cascade testing starting at aged 2, which is recommended. These are the patients who might be coming into the ER with a hemangioblastoma or picking up the phone and all of a sudden being deaf in one ear due to an endolymphatic sac tumor.
“We want to limit metastatic spread and preserve the kidneys,” Shuch said. “We don’t want to be doing radical nephrectomies. We want to avoid chronic kidney disease, prevent end-stage renal disease, and maximize quality of life.”
It’s a good idea to avoid surgical removal unless a patient’s tumor grows to be > 3 cm, a line that indicates risk of metastases, he said.
In terms of treatment, Shuch highlighted a 2021 study that showed benefit in VHL from belzutifan (Welireg), an oral HIF-2 α inhibitor approved by the US Food and Drug Administration. The medication significantly reduced the need for surgical intervention.
“Patients go on this drug, and surgeons are putting their scalpels down,” said Shuch, who worked on the 2021 study.
Other hereditary syndromes include the rare hereditary papillary RCC, and Birt-Hogg-Dubé syndrome, believed to affect 1 in 200,000 people but may be more common, he said.
Birt-Hogg-Dubé syndrome is linked to lung cysts, lung collapse, and skin manifestations. The 3 cm surgery rule is appropriate in these cases, Shuch said, and metastases are rare.
Another condition, hereditary leiomyomatosis and RCC, is the most dangerous hereditary form. Originally thought to affect 1 in 200,000 people, hereditary leiomyomatosis and RCC is similar to Birt-Hogg-Dubé syndrome in that it is believed to be more common.
“You will see this,” Shuch predicted.
Shuch advised colleagues to intervene early and take a large margin during surgery.
He also highlighted familial paraganglioma syndrome, which is associated with gastrointestinal stromal tumors, and Cowden syndrome, which is linked to skin manifestations and breast, thyroid, and endometrial cancer.
Shuch reported that he had no disclosures.
The role of hereditary syndromes in renal cell carcinoma (RCC) might be easily missed, a kidney cancer specialist said during a recent Association of VA Hematology and Oncology (AVAHO) seminar in Long Beach, California, though careful clinical evaluation can uncover genetic traits that may affect treatment and familial risk.
“The importance of finding or identifying hereditary forms of kidney cancer really should not be underestimated,” said urologist Brian Shuch, MD, director of the UCLA Kidney Cancer Program, on treating veterans with kidney cancer.
According to Shuch, recent data suggest that about 4.5% of patients with RCC have a hereditary syndrome: “A lot of times, these hide in plain sight. You have to really look deep and try to figure things out and understand that maybe they have a hereditary form of kidney cancer.”
It is important to consider early genetic testing, Shuch said. Red flags for hereditary syndromes include early-onset RCC (age ≤ 45 years), multifocal tumors, bilateral tumors (especially in younger individuals), or a relevant family personal history, he said.
Unusual skin conditions are also potential signs, Shuch said. These can include leiomyomas, fibrofolliculomas, and angiofibromas: “Patients have lots of lumps or bumps.”
“When I look at a patient, I go head to toe and ask if there any issues with your vision, any issues with your hearing, any issues swallowing,” he explained at the meeting. “Do you have any problems with heart issues, adrenal issues? You’ve got to go through each organ, and it can lead you to different things.”
Shuch highlighted Von Hippel-Lindau (VHL) syndrome, which affects 1 in 25,000 people. About 80% to 90% of these patients have a family history, Shuch said.
But the others do not. “Unfortunately, some get diagnosed later in life because they don’t get cascade testing starting at aged 2, which is recommended. These are the patients who might be coming into the ER with a hemangioblastoma or picking up the phone and all of a sudden being deaf in one ear due to an endolymphatic sac tumor.
“We want to limit metastatic spread and preserve the kidneys,” Shuch said. “We don’t want to be doing radical nephrectomies. We want to avoid chronic kidney disease, prevent end-stage renal disease, and maximize quality of life.”
It’s a good idea to avoid surgical removal unless a patient’s tumor grows to be > 3 cm, a line that indicates risk of metastases, he said.
In terms of treatment, Shuch highlighted a 2021 study that showed benefit in VHL from belzutifan (Welireg), an oral HIF-2 α inhibitor approved by the US Food and Drug Administration. The medication significantly reduced the need for surgical intervention.
“Patients go on this drug, and surgeons are putting their scalpels down,” said Shuch, who worked on the 2021 study.
Other hereditary syndromes include the rare hereditary papillary RCC, and Birt-Hogg-Dubé syndrome, believed to affect 1 in 200,000 people but may be more common, he said.
Birt-Hogg-Dubé syndrome is linked to lung cysts, lung collapse, and skin manifestations. The 3 cm surgery rule is appropriate in these cases, Shuch said, and metastases are rare.
Another condition, hereditary leiomyomatosis and RCC, is the most dangerous hereditary form. Originally thought to affect 1 in 200,000 people, hereditary leiomyomatosis and RCC is similar to Birt-Hogg-Dubé syndrome in that it is believed to be more common.
“You will see this,” Shuch predicted.
Shuch advised colleagues to intervene early and take a large margin during surgery.
He also highlighted familial paraganglioma syndrome, which is associated with gastrointestinal stromal tumors, and Cowden syndrome, which is linked to skin manifestations and breast, thyroid, and endometrial cancer.
Shuch reported that he had no disclosures.
The role of hereditary syndromes in renal cell carcinoma (RCC) might be easily missed, a kidney cancer specialist said during a recent Association of VA Hematology and Oncology (AVAHO) seminar in Long Beach, California, though careful clinical evaluation can uncover genetic traits that may affect treatment and familial risk.
“The importance of finding or identifying hereditary forms of kidney cancer really should not be underestimated,” said urologist Brian Shuch, MD, director of the UCLA Kidney Cancer Program, on treating veterans with kidney cancer.
According to Shuch, recent data suggest that about 4.5% of patients with RCC have a hereditary syndrome: “A lot of times, these hide in plain sight. You have to really look deep and try to figure things out and understand that maybe they have a hereditary form of kidney cancer.”
It is important to consider early genetic testing, Shuch said. Red flags for hereditary syndromes include early-onset RCC (age ≤ 45 years), multifocal tumors, bilateral tumors (especially in younger individuals), or a relevant family personal history, he said.
Unusual skin conditions are also potential signs, Shuch said. These can include leiomyomas, fibrofolliculomas, and angiofibromas: “Patients have lots of lumps or bumps.”
“When I look at a patient, I go head to toe and ask if there any issues with your vision, any issues with your hearing, any issues swallowing,” he explained at the meeting. “Do you have any problems with heart issues, adrenal issues? You’ve got to go through each organ, and it can lead you to different things.”
Shuch highlighted Von Hippel-Lindau (VHL) syndrome, which affects 1 in 25,000 people. About 80% to 90% of these patients have a family history, Shuch said.
But the others do not. “Unfortunately, some get diagnosed later in life because they don’t get cascade testing starting at aged 2, which is recommended. These are the patients who might be coming into the ER with a hemangioblastoma or picking up the phone and all of a sudden being deaf in one ear due to an endolymphatic sac tumor.
“We want to limit metastatic spread and preserve the kidneys,” Shuch said. “We don’t want to be doing radical nephrectomies. We want to avoid chronic kidney disease, prevent end-stage renal disease, and maximize quality of life.”
It’s a good idea to avoid surgical removal unless a patient’s tumor grows to be > 3 cm, a line that indicates risk of metastases, he said.
In terms of treatment, Shuch highlighted a 2021 study that showed benefit in VHL from belzutifan (Welireg), an oral HIF-2 α inhibitor approved by the US Food and Drug Administration. The medication significantly reduced the need for surgical intervention.
“Patients go on this drug, and surgeons are putting their scalpels down,” said Shuch, who worked on the 2021 study.
Other hereditary syndromes include the rare hereditary papillary RCC, and Birt-Hogg-Dubé syndrome, believed to affect 1 in 200,000 people but may be more common, he said.
Birt-Hogg-Dubé syndrome is linked to lung cysts, lung collapse, and skin manifestations. The 3 cm surgery rule is appropriate in these cases, Shuch said, and metastases are rare.
Another condition, hereditary leiomyomatosis and RCC, is the most dangerous hereditary form. Originally thought to affect 1 in 200,000 people, hereditary leiomyomatosis and RCC is similar to Birt-Hogg-Dubé syndrome in that it is believed to be more common.
“You will see this,” Shuch predicted.
Shuch advised colleagues to intervene early and take a large margin during surgery.
He also highlighted familial paraganglioma syndrome, which is associated with gastrointestinal stromal tumors, and Cowden syndrome, which is linked to skin manifestations and breast, thyroid, and endometrial cancer.
Shuch reported that he had no disclosures.
Renal Cell Carcinoma: What You Need to Know About Hereditary Syndromes
Renal Cell Carcinoma: What You Need to Know About Hereditary Syndromes
What Hematologists Should Know About Cutaneous Porphyria and Hemochromatosis
One patient, a 39-year-old woman, went to a dermatologist seeking care for fluid-filled blisters over the backs of her hands and arms. Another patient, a 56-year-old man, sought care from his general practitioner owing to fatigue.
Their presentations were quite different, but the two patients shared one thing in common: iron overload. Both ended up in the care of hematologists who diagnosed their conditions as porphyria cutanea tarda (PCT) and hemochromatosis, respectively.
A pair of hematologists discussed the treatment of these disorders at the American Society of Hematology (ASH) 2024 Annual Meeting and in reports in Hematology: American Society of Hematology Education Program. Here’s a look at the guidance they provided.
Porphyria Cutanea Tarda: Skin Trouble
Testing revealed that the female patient had a highly elevated porphyrin levels: Her urine uroporphyrin was 3959 nmol/L (normal, < 30 nmol/L) and plasma uroporphyrin was 2.0 µg/dL (normal, < 1.0 µg/dL). Her serum ferritin level was also high, at 420 ng/mL (normal, < 200 ng/mL).
Rebecca Karp Leaf, MD, of Massachusetts General Hospital and Harvard Medical School, diagnosed her with PCT, a disorder of heme biosynthesis that often presents with skin manifestations.
As co-founder and co-director of the Boston hospital’s Porphyria Center, Karp Leaf is a leading expert in PCT, a rare disease that affects 5-10 people per 100,000. In addition to speaking at the ASH meeting in December, she described PCT in a December 2024 article in Hematology: American Society of Hematology Education Program.
PCT is caused by inhibition of an enzyme in heme biosynthesis and leads to accumulation of porphyrins in the liver and plasma, Karp Leaf said. Through a complex process, excess of iron leads to inhibition of the enzyme, which leads to a buildup of toxic porphyrins, she said. The condition causes painless, blistering lesions on sun-exposed skin, scarring, skin fragility, dark urine, and liver disease.
PCT most commonly occurs in middle age after the age of 40 and affects men more than women. “It’s the only porphyria that can occur absent a genetic variant,” she said, and 75% of cases have no genetic component.
Options for Treatment Include Antivirals and Phlebotomy
Risk factors for PCT include alcohol use, smoking, exogenous estrogen, hepatitis, and HIV mutations.
In regard to treatment, “modification of risk factors can be variably helpful: alcohol and smoking cessation, stopping exogenous estrogen, sun-protective clothing, and steroid-containing creams for lesions,” Karp Leaf said. “Most patients typically require further therapy to reduce liver porphyrins.”
Urine and plasma tests can help with diagnosis, she said. In patients with hepatitis C (HCV), “direct-acting antivirals can actually lead to resolution of PCT without any other therapy. We suspect that with effective antiviral treatment for HCV, the incidence of PCT will really go down.”
Therapeutic phlebotomy — blood removal — is another option. “It’s one of my favorite therapies because you don’t have to give somebody a drug. You can just take out iron,” Karp Leaf said. “Typically, we’ll start with venesection of 450 ccs of whole blood every 2 weeks, We target a ferritin level of 20 [ng/mL] but permit it up to 50 [ng/mL], or a little bit higher.”
The treatment leads to resolution of blisters in about 2-3 months, she said, and normalization of porphyrins by 13 months. Patients typically require about 6-8 treatments, she said.
Another option is iron chelation, iron removal via medicine, “but it’s expensive, has side effects, and is really not recommended if other treatments are available,” she said.
Hydroxychloroquine Can Be Helpful Too
Low-dose hydroxychloroquine can also be effective at 100 mg twice a week, “much lower than what we use in autoimmune disease,” Karp Leaf said. “We suspect that it’s taken up by the hepatic lysosomes and causes release of porphyrins. It causes clinical remission in about 6 months.”
However, higher doses can lead to liver injury, and the drug’s use is limited in end-stage kidney disease since porphyrins are excreted in the urine. These patients are especially difficult to treat, she said.
In the case of the 39-year-old patient, Karp Leaf recommended that the woman reduce her alcohol intake and begin using a copper intrauterine device for contraception instead of a combined oral contraceptive pill, which allowed her to undergo phlebotomy.
“She needed about eight sessions of therapeutic phlebotomy to achieve a ferritin of 30 [ng/mL], and her lesions resolved in 6 months,” Karp Leaf said. “Her plasma porphyrins resolved by 12 months. Her liver biochemistries were a bit elevated, and they subsequently normalized.”
Karp Leaf said she sees the patient about once a year.
Hemochromatosis: It’s (Probably) a Family Affair
In an adjoining presentation at ASH and in a December 2024 article in Hematology: American Society of Hematology Education Program, hematologist Domenico Girelli, MD, PhD, with the University of Verona, Italy, told colleagues about the 56-year-old male patient with fatigue. He also had a mildly enlarged liver, hyperferritinemia (890 µg/L vs normal value < 300 µg/L) and a mildly increased alanine aminotransferase level (46 U/L vs normal value < 40 U/L).
The patient was diagnosed with hemochromatosis, a genetic disorder caused by mutations that leads to increased transferrin saturation, Girelli said.
“By definition, hemochromatosis is characterized by the absence of signs of a primary red blood cell disorder — different from other disorders like transfusion iron overload or iron-loading anemias,” he said.
It’s also important to consider other possible causes of hyperferritinemia, because most cases of the symptom aren’t related to iron overload, he said. “A careful clinical history and a few laboratory parameters including transferrin saturation are generally sufficient for the differential diagnosis.”
As Girelli noted, “hemochromatosis can have a wide clinical spectrum ranging from mild to severe forms, which are strongly influenced by the co-presence of risk factors like alcohol [use], blood transfusion, and genetic factors captured by polygenic risk score.”
In Many Cases, Hemochromatosis Can Be Successfully Treated
According to Girelli, it’s important to understand the disease stage, because this information can predict the probability of advanced liver fibrosis, which can be a sign of a worse prognosis.
“The strongest clinical predictors of advanced liver fibrosis are ferritin higher than 1000 [µg/L] and the presence of arthropathy [joint disease],” he said. “If both are absent and the patient is asymptomatic, there is no need for further investigation. If both are present, further investigation — including cardiac MRI and full endocrine profile — are indicated. Liver biopsy may be indicated only in uncertain cases.”
Fortunately, “most patients are diagnosed in preclinical or early stage, and their prognosis is excellent, with a normal life expectancy,” he said
Phlebotomy remains the standard of care for hemochromatosis in uncomplicated cases. “It is safe, cheap, well-tolerated, and significantly reduces mortality and morbidity, especially when it is started before the development of cirrhosis,” he said.
Family Members Should Be Tested for Genetic Traits
It’s important to advise patients prior to phlebotomy to avoid undercooked seafood and wound contact with sea water because of the risk for sepsis due to the pathogen Vibrio vulnificus, Girelli said.
And it’s a good idea to test family members to see if they share a genetic risk for hemochromatosis, he said. The 56-year-old patient’s brother turned out to also have genetic risk, and his iron levels were very high. He had recently been diagnosed with seronegative arthritis that could be classified as secondary to hemochromatosis.
For management, Girelli said, patients should minimize or avoid alcohol consumption, eat a healthy diet, and avoid vitamin C and iron supplements even in multivitamin compounds. Patients should be encouraged to exercise and maintain an ideal weight.
The 56-year-old patient fared well, reaching a ferritin target of 50 mg/mL after multiple phlebotomy procedures that removed nearly 5 g of iron.
The patient tolerated the treatment and his fatigue resolved, Girelli said. “The maintenance treatment consisted of 3 phlebotomies per year. The patient remained asymptomatic and was eventually enrolled as a regular blood donor.”
Karp Leaf disclosed relationships with Alnylam, Recordati, and Disc Medicine. She is a member of the Porphyrias Consortium, part of the Rare Diseases Clinical Research Network, funded by the National Institutes of Health and led by the National Center for Advancing Translational Sciences (NCATS). The consortium is funded by NCATS and the National Institute of Diabetes and Digestive and Kidney Diseases. Girelli had no disclosures.
A version of this article first appeared on Medscape.com.
One patient, a 39-year-old woman, went to a dermatologist seeking care for fluid-filled blisters over the backs of her hands and arms. Another patient, a 56-year-old man, sought care from his general practitioner owing to fatigue.
Their presentations were quite different, but the two patients shared one thing in common: iron overload. Both ended up in the care of hematologists who diagnosed their conditions as porphyria cutanea tarda (PCT) and hemochromatosis, respectively.
A pair of hematologists discussed the treatment of these disorders at the American Society of Hematology (ASH) 2024 Annual Meeting and in reports in Hematology: American Society of Hematology Education Program. Here’s a look at the guidance they provided.
Porphyria Cutanea Tarda: Skin Trouble
Testing revealed that the female patient had a highly elevated porphyrin levels: Her urine uroporphyrin was 3959 nmol/L (normal, < 30 nmol/L) and plasma uroporphyrin was 2.0 µg/dL (normal, < 1.0 µg/dL). Her serum ferritin level was also high, at 420 ng/mL (normal, < 200 ng/mL).
Rebecca Karp Leaf, MD, of Massachusetts General Hospital and Harvard Medical School, diagnosed her with PCT, a disorder of heme biosynthesis that often presents with skin manifestations.
As co-founder and co-director of the Boston hospital’s Porphyria Center, Karp Leaf is a leading expert in PCT, a rare disease that affects 5-10 people per 100,000. In addition to speaking at the ASH meeting in December, she described PCT in a December 2024 article in Hematology: American Society of Hematology Education Program.
PCT is caused by inhibition of an enzyme in heme biosynthesis and leads to accumulation of porphyrins in the liver and plasma, Karp Leaf said. Through a complex process, excess of iron leads to inhibition of the enzyme, which leads to a buildup of toxic porphyrins, she said. The condition causes painless, blistering lesions on sun-exposed skin, scarring, skin fragility, dark urine, and liver disease.
PCT most commonly occurs in middle age after the age of 40 and affects men more than women. “It’s the only porphyria that can occur absent a genetic variant,” she said, and 75% of cases have no genetic component.
Options for Treatment Include Antivirals and Phlebotomy
Risk factors for PCT include alcohol use, smoking, exogenous estrogen, hepatitis, and HIV mutations.
In regard to treatment, “modification of risk factors can be variably helpful: alcohol and smoking cessation, stopping exogenous estrogen, sun-protective clothing, and steroid-containing creams for lesions,” Karp Leaf said. “Most patients typically require further therapy to reduce liver porphyrins.”
Urine and plasma tests can help with diagnosis, she said. In patients with hepatitis C (HCV), “direct-acting antivirals can actually lead to resolution of PCT without any other therapy. We suspect that with effective antiviral treatment for HCV, the incidence of PCT will really go down.”
Therapeutic phlebotomy — blood removal — is another option. “It’s one of my favorite therapies because you don’t have to give somebody a drug. You can just take out iron,” Karp Leaf said. “Typically, we’ll start with venesection of 450 ccs of whole blood every 2 weeks, We target a ferritin level of 20 [ng/mL] but permit it up to 50 [ng/mL], or a little bit higher.”
The treatment leads to resolution of blisters in about 2-3 months, she said, and normalization of porphyrins by 13 months. Patients typically require about 6-8 treatments, she said.
Another option is iron chelation, iron removal via medicine, “but it’s expensive, has side effects, and is really not recommended if other treatments are available,” she said.
Hydroxychloroquine Can Be Helpful Too
Low-dose hydroxychloroquine can also be effective at 100 mg twice a week, “much lower than what we use in autoimmune disease,” Karp Leaf said. “We suspect that it’s taken up by the hepatic lysosomes and causes release of porphyrins. It causes clinical remission in about 6 months.”
However, higher doses can lead to liver injury, and the drug’s use is limited in end-stage kidney disease since porphyrins are excreted in the urine. These patients are especially difficult to treat, she said.
In the case of the 39-year-old patient, Karp Leaf recommended that the woman reduce her alcohol intake and begin using a copper intrauterine device for contraception instead of a combined oral contraceptive pill, which allowed her to undergo phlebotomy.
“She needed about eight sessions of therapeutic phlebotomy to achieve a ferritin of 30 [ng/mL], and her lesions resolved in 6 months,” Karp Leaf said. “Her plasma porphyrins resolved by 12 months. Her liver biochemistries were a bit elevated, and they subsequently normalized.”
Karp Leaf said she sees the patient about once a year.
Hemochromatosis: It’s (Probably) a Family Affair
In an adjoining presentation at ASH and in a December 2024 article in Hematology: American Society of Hematology Education Program, hematologist Domenico Girelli, MD, PhD, with the University of Verona, Italy, told colleagues about the 56-year-old male patient with fatigue. He also had a mildly enlarged liver, hyperferritinemia (890 µg/L vs normal value < 300 µg/L) and a mildly increased alanine aminotransferase level (46 U/L vs normal value < 40 U/L).
The patient was diagnosed with hemochromatosis, a genetic disorder caused by mutations that leads to increased transferrin saturation, Girelli said.
“By definition, hemochromatosis is characterized by the absence of signs of a primary red blood cell disorder — different from other disorders like transfusion iron overload or iron-loading anemias,” he said.
It’s also important to consider other possible causes of hyperferritinemia, because most cases of the symptom aren’t related to iron overload, he said. “A careful clinical history and a few laboratory parameters including transferrin saturation are generally sufficient for the differential diagnosis.”
As Girelli noted, “hemochromatosis can have a wide clinical spectrum ranging from mild to severe forms, which are strongly influenced by the co-presence of risk factors like alcohol [use], blood transfusion, and genetic factors captured by polygenic risk score.”
In Many Cases, Hemochromatosis Can Be Successfully Treated
According to Girelli, it’s important to understand the disease stage, because this information can predict the probability of advanced liver fibrosis, which can be a sign of a worse prognosis.
“The strongest clinical predictors of advanced liver fibrosis are ferritin higher than 1000 [µg/L] and the presence of arthropathy [joint disease],” he said. “If both are absent and the patient is asymptomatic, there is no need for further investigation. If both are present, further investigation — including cardiac MRI and full endocrine profile — are indicated. Liver biopsy may be indicated only in uncertain cases.”
Fortunately, “most patients are diagnosed in preclinical or early stage, and their prognosis is excellent, with a normal life expectancy,” he said
Phlebotomy remains the standard of care for hemochromatosis in uncomplicated cases. “It is safe, cheap, well-tolerated, and significantly reduces mortality and morbidity, especially when it is started before the development of cirrhosis,” he said.
Family Members Should Be Tested for Genetic Traits
It’s important to advise patients prior to phlebotomy to avoid undercooked seafood and wound contact with sea water because of the risk for sepsis due to the pathogen Vibrio vulnificus, Girelli said.
And it’s a good idea to test family members to see if they share a genetic risk for hemochromatosis, he said. The 56-year-old patient’s brother turned out to also have genetic risk, and his iron levels were very high. He had recently been diagnosed with seronegative arthritis that could be classified as secondary to hemochromatosis.
For management, Girelli said, patients should minimize or avoid alcohol consumption, eat a healthy diet, and avoid vitamin C and iron supplements even in multivitamin compounds. Patients should be encouraged to exercise and maintain an ideal weight.
The 56-year-old patient fared well, reaching a ferritin target of 50 mg/mL after multiple phlebotomy procedures that removed nearly 5 g of iron.
The patient tolerated the treatment and his fatigue resolved, Girelli said. “The maintenance treatment consisted of 3 phlebotomies per year. The patient remained asymptomatic and was eventually enrolled as a regular blood donor.”
Karp Leaf disclosed relationships with Alnylam, Recordati, and Disc Medicine. She is a member of the Porphyrias Consortium, part of the Rare Diseases Clinical Research Network, funded by the National Institutes of Health and led by the National Center for Advancing Translational Sciences (NCATS). The consortium is funded by NCATS and the National Institute of Diabetes and Digestive and Kidney Diseases. Girelli had no disclosures.
A version of this article first appeared on Medscape.com.
One patient, a 39-year-old woman, went to a dermatologist seeking care for fluid-filled blisters over the backs of her hands and arms. Another patient, a 56-year-old man, sought care from his general practitioner owing to fatigue.
Their presentations were quite different, but the two patients shared one thing in common: iron overload. Both ended up in the care of hematologists who diagnosed their conditions as porphyria cutanea tarda (PCT) and hemochromatosis, respectively.
A pair of hematologists discussed the treatment of these disorders at the American Society of Hematology (ASH) 2024 Annual Meeting and in reports in Hematology: American Society of Hematology Education Program. Here’s a look at the guidance they provided.
Porphyria Cutanea Tarda: Skin Trouble
Testing revealed that the female patient had a highly elevated porphyrin levels: Her urine uroporphyrin was 3959 nmol/L (normal, < 30 nmol/L) and plasma uroporphyrin was 2.0 µg/dL (normal, < 1.0 µg/dL). Her serum ferritin level was also high, at 420 ng/mL (normal, < 200 ng/mL).
Rebecca Karp Leaf, MD, of Massachusetts General Hospital and Harvard Medical School, diagnosed her with PCT, a disorder of heme biosynthesis that often presents with skin manifestations.
As co-founder and co-director of the Boston hospital’s Porphyria Center, Karp Leaf is a leading expert in PCT, a rare disease that affects 5-10 people per 100,000. In addition to speaking at the ASH meeting in December, she described PCT in a December 2024 article in Hematology: American Society of Hematology Education Program.
PCT is caused by inhibition of an enzyme in heme biosynthesis and leads to accumulation of porphyrins in the liver and plasma, Karp Leaf said. Through a complex process, excess of iron leads to inhibition of the enzyme, which leads to a buildup of toxic porphyrins, she said. The condition causes painless, blistering lesions on sun-exposed skin, scarring, skin fragility, dark urine, and liver disease.
PCT most commonly occurs in middle age after the age of 40 and affects men more than women. “It’s the only porphyria that can occur absent a genetic variant,” she said, and 75% of cases have no genetic component.
Options for Treatment Include Antivirals and Phlebotomy
Risk factors for PCT include alcohol use, smoking, exogenous estrogen, hepatitis, and HIV mutations.
In regard to treatment, “modification of risk factors can be variably helpful: alcohol and smoking cessation, stopping exogenous estrogen, sun-protective clothing, and steroid-containing creams for lesions,” Karp Leaf said. “Most patients typically require further therapy to reduce liver porphyrins.”
Urine and plasma tests can help with diagnosis, she said. In patients with hepatitis C (HCV), “direct-acting antivirals can actually lead to resolution of PCT without any other therapy. We suspect that with effective antiviral treatment for HCV, the incidence of PCT will really go down.”
Therapeutic phlebotomy — blood removal — is another option. “It’s one of my favorite therapies because you don’t have to give somebody a drug. You can just take out iron,” Karp Leaf said. “Typically, we’ll start with venesection of 450 ccs of whole blood every 2 weeks, We target a ferritin level of 20 [ng/mL] but permit it up to 50 [ng/mL], or a little bit higher.”
The treatment leads to resolution of blisters in about 2-3 months, she said, and normalization of porphyrins by 13 months. Patients typically require about 6-8 treatments, she said.
Another option is iron chelation, iron removal via medicine, “but it’s expensive, has side effects, and is really not recommended if other treatments are available,” she said.
Hydroxychloroquine Can Be Helpful Too
Low-dose hydroxychloroquine can also be effective at 100 mg twice a week, “much lower than what we use in autoimmune disease,” Karp Leaf said. “We suspect that it’s taken up by the hepatic lysosomes and causes release of porphyrins. It causes clinical remission in about 6 months.”
However, higher doses can lead to liver injury, and the drug’s use is limited in end-stage kidney disease since porphyrins are excreted in the urine. These patients are especially difficult to treat, she said.
In the case of the 39-year-old patient, Karp Leaf recommended that the woman reduce her alcohol intake and begin using a copper intrauterine device for contraception instead of a combined oral contraceptive pill, which allowed her to undergo phlebotomy.
“She needed about eight sessions of therapeutic phlebotomy to achieve a ferritin of 30 [ng/mL], and her lesions resolved in 6 months,” Karp Leaf said. “Her plasma porphyrins resolved by 12 months. Her liver biochemistries were a bit elevated, and they subsequently normalized.”
Karp Leaf said she sees the patient about once a year.
Hemochromatosis: It’s (Probably) a Family Affair
In an adjoining presentation at ASH and in a December 2024 article in Hematology: American Society of Hematology Education Program, hematologist Domenico Girelli, MD, PhD, with the University of Verona, Italy, told colleagues about the 56-year-old male patient with fatigue. He also had a mildly enlarged liver, hyperferritinemia (890 µg/L vs normal value < 300 µg/L) and a mildly increased alanine aminotransferase level (46 U/L vs normal value < 40 U/L).
The patient was diagnosed with hemochromatosis, a genetic disorder caused by mutations that leads to increased transferrin saturation, Girelli said.
“By definition, hemochromatosis is characterized by the absence of signs of a primary red blood cell disorder — different from other disorders like transfusion iron overload or iron-loading anemias,” he said.
It’s also important to consider other possible causes of hyperferritinemia, because most cases of the symptom aren’t related to iron overload, he said. “A careful clinical history and a few laboratory parameters including transferrin saturation are generally sufficient for the differential diagnosis.”
As Girelli noted, “hemochromatosis can have a wide clinical spectrum ranging from mild to severe forms, which are strongly influenced by the co-presence of risk factors like alcohol [use], blood transfusion, and genetic factors captured by polygenic risk score.”
In Many Cases, Hemochromatosis Can Be Successfully Treated
According to Girelli, it’s important to understand the disease stage, because this information can predict the probability of advanced liver fibrosis, which can be a sign of a worse prognosis.
“The strongest clinical predictors of advanced liver fibrosis are ferritin higher than 1000 [µg/L] and the presence of arthropathy [joint disease],” he said. “If both are absent and the patient is asymptomatic, there is no need for further investigation. If both are present, further investigation — including cardiac MRI and full endocrine profile — are indicated. Liver biopsy may be indicated only in uncertain cases.”
Fortunately, “most patients are diagnosed in preclinical or early stage, and their prognosis is excellent, with a normal life expectancy,” he said
Phlebotomy remains the standard of care for hemochromatosis in uncomplicated cases. “It is safe, cheap, well-tolerated, and significantly reduces mortality and morbidity, especially when it is started before the development of cirrhosis,” he said.
Family Members Should Be Tested for Genetic Traits
It’s important to advise patients prior to phlebotomy to avoid undercooked seafood and wound contact with sea water because of the risk for sepsis due to the pathogen Vibrio vulnificus, Girelli said.
And it’s a good idea to test family members to see if they share a genetic risk for hemochromatosis, he said. The 56-year-old patient’s brother turned out to also have genetic risk, and his iron levels were very high. He had recently been diagnosed with seronegative arthritis that could be classified as secondary to hemochromatosis.
For management, Girelli said, patients should minimize or avoid alcohol consumption, eat a healthy diet, and avoid vitamin C and iron supplements even in multivitamin compounds. Patients should be encouraged to exercise and maintain an ideal weight.
The 56-year-old patient fared well, reaching a ferritin target of 50 mg/mL after multiple phlebotomy procedures that removed nearly 5 g of iron.
The patient tolerated the treatment and his fatigue resolved, Girelli said. “The maintenance treatment consisted of 3 phlebotomies per year. The patient remained asymptomatic and was eventually enrolled as a regular blood donor.”
Karp Leaf disclosed relationships with Alnylam, Recordati, and Disc Medicine. She is a member of the Porphyrias Consortium, part of the Rare Diseases Clinical Research Network, funded by the National Institutes of Health and led by the National Center for Advancing Translational Sciences (NCATS). The consortium is funded by NCATS and the National Institute of Diabetes and Digestive and Kidney Diseases. Girelli had no disclosures.
A version of this article first appeared on Medscape.com.