AMA News Wire
Q&A: Physician advocacy for patients with HIV gets personal
Mar 24, 2023
As a physician working where the Upper East Side and East Harlem meet in Manhattan, Richard Silvera, MD, MPH, has a unique perspective on medicine and medical justice. The Icahn School of Medicine at Mount Sinai, where he is an assistant professor of infectious diseases and the associate program director of the Infectious Disease Fellowship, straddles the border between one of the richest ZIP codes in the U.S. and one of the poorest.
The social, political and financial disparities between these two neighborhoods would pose challenges for physicians in even the most ordinary primary care settings. But Dr. Silvera isn’t doing ordinary primary care. Most of his work is with patients living with HIV.
“I describe HIV primary care as primary care on steroids,” Dr. Silvera said in an interview conducted at the 2023 AMA National Advocacy Conference, in Washington, which included visits to congressional offices. “We're dealing with complex medical issues in the social context of patients’ lives and communities, and then HIV amps everything up a thousand percent.”
Case in point: access to medications.
“The HIV medications that are most tolerable, with the fewest side effects—none of them are generic,” he said. “So we are dealing with patented medications that are often very expensive and almost impossible for the average person to afford without some sort of insurance coverage. That points to the institutional complexity of people with HIV. Almost all of them are contending with some sort of private insurance complication or government program to help them afford their medications.”
Of course, the challenges run much deeper too. For example, anal cancer—the focus of Dr. Silvera’s research—is at least ten times more common in people with HIV than the general population.
So when a colleague at Icahn last year forwarded an email announcing 11 openings in the second cohort of the Medical Justice in Advocacy Fellowship, an education initiative from the AMA and the Satcher Health Leadership Institute at the Morehouse School of Medicine, Dr. Silvera was quick to put his name in the hat. The fellowship aims to prepare the next generation of physician advocacy leaders to generate and exchange solutions and drive meaningful policy and structural changes.
About halfway into the 14-month program—which kicked off with a three-day, in-person intensive in September and features monthly virtual learning sessions—Dr. Silvera took a break from the legislative visits he and the other fellows were doing to speak with the AMA about how the fellowship is furthering his career goals.
One of the key takeaways: Advocacy deserves a place in everything physicians do—in education, in research, in diagnostics, even in the exam room.
AMA: What attracted you to the Medical Justice in Advocacy Fellowship?
Dr. Silvera: My interest was sparked because as I had gotten to the point in my career where I was no longer just a learner; I was actually someone with some agency, and I felt a need to do more for my patients.
However, as someone who cares about these issues passionately, I have often ended up feeling like the weirdo, a little bit alone, a little bit isolated. But the moment I walked into the room with the other doctors in this program, I immediately said to myself, "These people care about the things I care about." ...
We had an immediate connection. We immediately found common interests and ways to amplify each other's work.
AMA: How does it relate to your patient population?
Dr. Silvera: I see all of this as an extension of primary care. I was drawn to HIV medicine and primary care because I wanted to take care of my patients holistically. Medicine doesn't exist in a vacuum—it exists in a social context, in a financial context, in a political context. So, if I'm just focused just on writing prescriptions, I'm ignoring other things that may have an even more powerful impact on people's lives.
AMA: And how do you relate to it personally? What is your background?
Dr. Silvera: I'm a first-generation American. My mom is from Belize and my father is from Jamaica. I was born here in the U.S., in New York, where I’ve lived my whole life. I’m committed to the health of New York.
I'm also a gay man, and I have a chronic illness—type 1 diabetes. So, I have a lot in common with my patients. And, on some level, some people might think that, “Oh, you're not supposed to bring that stuff with you into the exam room.” But I've found that bringing that into the room has really helped me connect with patients in a much more profound way.
AMA: You shared a story on your Capitol Hill visit that exemplified the unique challenges HIV patients face in getting the care they need. What was that?
Dr. Silvera: It was about prior authorizations. Every physician knows they are a huge headache, just a barrier to delivering medical care. But that barrier has real-world consequences. I help patients with post-exposure prophylaxis, which involves taking HIV medications after a high-risk exposure to prevent infection, but within a very short window—we have 72 hours—so even a one-day delay can make a difference.
Well, we had a patient who had a high-risk exposure and contacted our hotline. The patient got connected to clinic and did everything right to prevent HIV infection from happening. But this person was privately insured, and the insurance company required prior authorization for the medication they needed to prevent HIV infection, and that delay led to an HIV seroconversion because they weren't able to get the medications in time.
AMA: How does that feel for you, as a doctor, to have that experience?
Dr. Silvera: This person did all the things we told them to do, and the system failed them. The system created a barrier for no discernible medical reason. And now they're going to pay the price for a decision made in the boardroom that has no connection to their care. Prior authorizations don't improve patient outcomes. All they do is delay patients getting care and distract doctors from caring for patients. I think you'd be hard-pressed to find an American who hasn't been touched in some way by a prior authorization.
AMA: So that demonstrates the importance of advocacy at the policy level, but it can also play a role in research, correct?
Dr. Silvera: Yes. For example, I do research on new ways of finding anal cancers in people with HIV. Now, we know that anal cancer is caused by HPV—it’s the most common sexually transmitted infection in the world, and almost everybody who has sex will catch it. For the majority of people, their body gets rid of it, and they don't have to worry about it again. But some people get persistent infection, which can lead to warts and cancers. And we know that people with HIV, for unclear reasons, possibly due to dysregulation of their immune systems, have higher rates of anal cancer, somewhere from 10 to 50 times higher rates of anal cancer.
Due to some recent research, known as the ANCHOR trial, we know that screening for anal cancer can help us prevent cancer. Unfortunately, our current screening protocols are really not up to the task. They're non-specific and onerous on patients, and we don't have a really good way of picking out who's going to have recurrent disease. So, my research is trying to use genomics to identify pre-cancerous lesions more efficiently.
We look for abnormal cells, as well as HPV itself. If we find any of those, we then have someone come back and do an examination called the high-resolution anoscopy, where you look at someone’s anal area to look for signs of pre-cancer. Unfortunately, we don't have enough doctors who are trained to do that to deliver all the exams that need to be done, plus it requires frequent follow-up because patients get the exam for diagnosis, then they have to come back for treatment and then come back six months later for surveillance.
AMA: So, the issue isn’t just the need for more screening, but the need for smarter follow-up?
Dr. Silvera: People who have complicated lives find it really tough to do three doctor's visits in nine months. We know that people are not able to complete all these tasks. I did a study that found that only about 25% of people diagnosed with pre-cancerous lesions make it all the way through screening, diagnosis, treatment and retesting. I'm trying to find ways of making it more efficient so we can provide more support to the folks who need to make it all the way through that, and so the folks who don't need it can be spared.
AMA: It sounds as though physicians are still learning all the ways advocacy can be woven into health care.
Dr. Silvera: I think advocacy and medical justice can and should be woven into every aspect of medicine. You need to have it in the emergency room, in the pathology lab, in the medical school lecture.
Advocacy needs to be everywhere because, unfortunately, health inequity is everywhere. Even as a researcher, I can craft my questions with an advocacy lens to make sure the data I collect can be used to advocate for patients who are experiencing unequal access to good health. That can make the research data more useful down the line.
For quite a while, doctors have thought of themselves as apolitical, that advocacy wasn’t part of their societal role. But I think the doctors who are coming up now, and the medical students behind them, don't necessarily agree with that sentiment. Doctors are given enormous privilege and power in society, and I think many of my colleagues agree that we are obligated to use that power to advocate for those who don't have that power.
Justice requires identification of problems, acceptance of culpability and a commitment to change. But being an advocate is scary. You have to be brave, and being surrounded by my co-fellows reminds me that I'm not alone.
AMA: What other advice would you give to physicians looking to become better advocates?
Dr. Silvera: This fellowship has shown me the importance of bringing your whole self to your patient care, to your advocacy efforts, to your work. Not to try and shave off the parts of yourself that you think are not what a doctor is supposed to be. If you're a doctor, you are what a doctor is supposed to be.
Said another way, in medicine we're trained to not let ourselves be vulnerable. You're supposed to take yourself out of the room and just be a siphon for medical knowledge. But pointing out your own lived experience is powerful, not only for connecting with patients, but also for advocating for them. You don't have to be invisible. You don't have to deny the other parts of your life. You can bring your whole self to advocacy to make it more real, and more passionate, and more effective.
