On a sweltering day in June 2021, Nicole, whose real name has been changed to protect her privacy, walked into an HIV treatment clinic in Atlanta, Georgia, expecting something different. She had endured a lifetime of discrimination for being both black and transgender while struggling with HIV, diabetes and hypertension. She worked as a manager of a fast food restaurant while being a parent to several young LGBTQ people. Access to consistent health care was a daily battle, and Nicole’s past interactions with providers had discouraged her. But she and I had hit it off at a previous telemedicine appointment, so she scheduled an in-person visit to the clinic where I worked. As a black, gay doctor, I wanted to do better with her.
Despite the incredible scientific advances in HIV care that have taken place since the epidemic began 40 years ago, many people from racially and sexually minority communities still fall through the cracks. Some cannot afford care, and others cannot access it due to work or family demands, lack of transportation or documentation, or other barriers. Many face stigma and discrimination from the care providers themselves. I was determined to do whatever I could to change the narrative of Nicole’s healthcare experiences that day.
She got HIV drugs through the AIDS Drug Assistance Program, which provides antiretroviral therapy (ART) to uninsured people. To stay eligible for the state-sponsored program, she endured heavy paperwork, drove 45 minutes each way to the clinic for regular visits, and attended required meetings with a benefits counselor every six months. month. To save money, she filled prescriptions for some of her other conditions at several different local pharmacies. She got her hormones off the street because a former clinician refused to prescribe them unless she sought mental health counseling first.
Nicole arrived 30 minutes late for our appointment after a long drive into town during rush hour. As we discussed her gender identity, sexual health, and dating partners, I saw a surprised look on her face, which suggests to me that few clinicians had asked her these questions before. Her physical exam was nearly normal except for extensive anal warts. “They’ve been there a long time,” she said. “Nobody knows what to do with them.” I imagined some care providers were so uncomfortable with her being transgender that they skipped the genital exam altogether.
As we sat together in that sterile exam room, I realized the medical community had let her down, and it wasn’t because of a lack of progress in HIV treatment and prevention. . ART has evolved from toxic drugs taken multiple times a day to one-pill regimens with few side effects. We now have fortnightly injections that can maintain complete viral suppression. First approved in 2012, pre-exposure prophylaxis, or PrEP, given as a daily oral pill or twice-weekly injection can reduce the risk of contracting HIV by 90 to 100 percent. Despite these great scientific advances, Nicole does not reap the benefits of these advances.
What’s to blame? Many social, institutional and interpersonal medical barriers are. Inequalities in housing and food insecurity, access to insurance, and bias and stigma in medical care contribute to persistent racial and ethnic disparities in HIV incidence rates, commitment in care and viral suppression. For Nicole, HIV is just one of many circumstances that make daily life difficult. America’s fragmented and dysfunctional healthcare system only makes matters worse.
These disparate HIV health outcomes are complicated by a maze of bureaucracy in medical spaces that makes it nearly impossible for many to access the drugs that should be within their reach. This includes cumbersome paperwork to get ART if one is uninsured, underfunded clinics and medical staff exhausted by COVID, and institutional policies that prioritize the number of visits and billing. on a co-pay basis rather than patient-centred care. For people living with HIV, these challenges in clinics across our country can make getting and staying on ART a seemingly insurmountable climb.
After her exam, Nicole asked, “So can I do my lab work?” Unfortunately, our appointment having started late, the technicians had already left for the day. She should take another trip. Even our clinic, which worked hard to help those most in need, was not flexible enough to help her on this occasion. As I watched her face darken in disappointment, I feared we might lose her again. I was afraid of failing him, like so many clinicians before me.
Despite my concerns, Nicole told me that she left that day feeling encouraged because she felt heard for the first time in ages. We planned to restart his antiretroviral therapy, refer him for colorectal surgery to assess his warts, explore insurance options with his employer, and consolidate all his medications into one pharmacy.. I sent her hormone prescriptions, confirming what she already knew: there is no one-size-fits-all policy requiring a mental health specialist to approve them.
The burden of improving HIV prevention and treatment now rests on our medical systems. As we seek to provide more equitable care, policy improvements at the state and national level must be accompanied by changes within health care systems and clinics: we must strengthen the workforce case management to ensure patients can attend their appointments and understand the processes needed to access treatment. We need to ensure that patients can have the necessary blood tests done on the day of their check-up appointment. We need to develop sensible patient flow protocols to ensure people are seen in a timely and efficient manner. Offering patients a variety of appointments, such as telehealth, walk-in visits, and home visits, can accommodate the fluidity of life. Clinics should hire staff and providers who reflect the communities they serve, and they should invest in cultural humility training to reduce bias and stigma in treatment. Changes at the clinic level, while relatively small compared to broad national policies, can have a huge impact on whether or not a person living with HIV decides to continue accessing it.
Medical approaches to HIV prevention and treatment have come a long way. These groundbreaking breakthroughs can help address the current HIV-related health inequities in the United States and, ultimately, lead to a cure. But all of this will be for naught if the medical systems and personnel who are gatekeepers to these advances act more as barriers to health care than enablers.
I would like to tell you that the work we did that day helped Nicole feel more optimistic about the confidence in medical systems and providers. I would like to tell you that his future appointments at the clinic went well and did not require repeat visits. I would like to tell you that she found her voice with her employer, that she obtained private insurance through her work and that she is now receiving care for all her medical problems. I would like to tell you that she is treated by other medical staff with the dignity and respect she deserves..
But I can not. She missed our next appointment, and by the time the clinic was able to reschedule her, I had stopped working there. The truth is that patients drop out of care more often than we care to admit, sometimes due to a revolving door of clinical providers moving in and out of these facilities. I took comfort knowing that we were connected that day and that I did my best to give her the medical care she deserved. Perhaps our interaction restored his faith in human connectedness – a dynamic that can mitigate some of the damage inflicted by failing and discriminatory health systems. Nicole came to our date expecting something different. I hope she now realizes that something different is possible.
This article is part of “Innovations In: Health Equity”, an editorially independent special report that was produced with financial support from Takeda Pharmaceuticals.