On a hot June day in 2021, Nicole, whose real name was changed to protect her privacy, walked into an HIV clinic in Atlanta, Georgia, waiting for something else. She has been discriminated against throughout her life for being black and transgender, and has dealt with HIV, diabetes and hypertension. She worked as a fast food restaurant manager, raising several LGBTQ young men. Access to ongoing health care has been a daily struggle, and Nicole’s past interactions with suppliers have put her in a sense of frustration. But we got along with her during the previous telemedicine appointment, so she scheduled a personal visit to the clinic where I worked. As a black doctor who loves same-sex, I wanted to make her better.
Despite the amazing scientific advances in HIV treatment that have taken place since the outbreak 40 years ago, many people in racially and sexually smaller communities still fail. Some cannot afford care, while others cannot access it because of work or family needs, lack of transportation or documents, or other barriers. Many face stigma and discrimination from health professionals themselves. I was determined to do my best to change Nicole’s story of experiences from medical care that day.
She received HIV medication through the AIDS Aid Program, which provides antiretroviral therapy (ART) to the uninsured. To be eligible for the state-funded program, she endured cumbersome bureaucratic work, traveled 45 minutes each way to the clinic for regular visits, and attended necessary meetings with a benefits consultant every six months. To save money, she has written prescriptions for some of her other ailments at several different local pharmacies. She got her hormones off the street because a previous doctor refused to prescribe them unless she first sought mental health counseling.
Nicole was 30 minutes late after a long trip to the city during rush hour. When we discussed her gender identity, sexual health, and romantic partners, I saw a surprised expression on her face that suggested that several clinicians had asked her these questions before. Her examination was mostly normal, except for extensive anal warts. “They’ve been there a long time,” she said. “No one knows what to do with them.” I imagined that some doctors were so uncomfortable that she was transgender that they even bypassed the genital examination.
When we sat together in that sterile examination room, I realized that the medical community had let her down, and it wasn’t because of a lack of advances in HIV treatment and prevention. ART has evolved from toxic drugs taken several times a day, to single-pill regimens with few side effects. We now have injections every two months that can maintain complete suppression of the virus. Newly approved in 2012, pre-exposure prophylaxis, or PrEP, given as a daily oral tablet or biennial injection, can reduce the chances of contracting HIV by 90-100 percent. Despite these great scientific advances, Nicole did not reap the fruits of this progress.
What is to blame? Lots of social, institutional and interpersonal health barriers. Inequalities in housing and food security, access to insurance, and prejudice and stigma in health care contribute to perpetuating racial and ethnic disparities in HIV levels, participation in health care, and virus suppression. For Nicole, HIV is just one of the many things that make everyday life difficult. America’s fragmented and dysfunctional health care system is only exacerbating the situation.
These different health outcomes of HIV are complicated by the maze of bureaucracy in medical facilities, making it almost impossible for many to access medicines that need to be within their reach. This includes cumbersome documentation for obtaining ART if the person is not insured, clinics and medical staff burned out by COVID, and the institute’s policies that prioritize the number of visits and surcharges over patient-centered care. For people living with HIV, these problems in our country’s clinics can make getting and staying on ART a rise that feels insurmountable.
After the exam, Nicole asked, “So can I do my lab work?” Unfortunately, due to the fact that our meeting started late, the equipment was gone for a day. She would have to make another trip. Even our clinic, which worked hard to help those who needed it most, was not flexible enough to help her with this. Looking at the disappointment on her face, I feared we would lose her again. I was afraid to bring her, like many clinicians to me.
Despite my concerns, Nicole told me that she left that day with encouragement because she felt she had been heard for the first time in centuries. We planned to restart her ART, refer her for colorectal surgery to assess her warts, explore insurance options with her employer and combine all of her medications in one pharmacy. I sent her prescriptions for hormones, confirming what she already knew: there is no one-size-fits-all policy that requires a mental health professional to approve them.
The burden of improving HIV prevention and treatment now rests on the shoulders of our health systems. As we strive to provide fairer care, improving national and national policies must be accompanied by changes in health systems and clinics: we need to improve case management staff to ensure that patients can come to the reception and understand the processes needed to access treatment. . We need to make sure that patients can pass the necessary blood test on the day of admission for examination. We need to develop smart patient flow protocols to ensure that people are noticed in a timely and effective manner. Offering patients a wide range of appointments, such as health care, visits and home calls, can take into account the flow of life. Clinics need to hire staff and providers that reflect community service, and they need to invest in teaching cultural humility to reduce bias and stigma in treatment. Changes at the clinic level, although relatively small compared to broad national policies, can have a huge impact on whether or not someone with HIV decides to continue accessing care there.
Medical approaches to HIV prevention and treatment have come a long way. These groundbreaking advances can help tackle current HIV health inequalities in the United States and ultimately lead to treatment. But all this will be in vain if the medical systems and personnel who are the custodians of these achievements will act more as barriers to health than intermediaries.
I would like to tell you that the work we did that day helped Nicole feel more optimistic about the trust of medical systems and suppliers. I want to tell you that her future admissions to the clinic went smoothly and did not require repeated visits. I want to tell you that she found a voice with her employer, got private insurance through work and is now getting help on all her medical issues. I want to tell you that other health professionals treat her with the dignity and respect she deserves..
But I can’t. She missed our next appointment, and by the time the clinic was able to move her, I stopped working there. Truth be told, patients drop out of care more often than we would like to admit, sometimes due to the fact that solemn clinics enter and leave these facilities. I was comforted that we were in touch that day and that I did my best to give her the medical care she deserved. Perhaps our interaction has restored her faith in human communication – a dynamic that can mitigate some of the damage done by broken and discriminatory health care systems. Nicole came to us for a reception, expecting something else. I hope she now understands that something else is possible.