Thirty years ago this week Congress passed the Ryan White Comprehensive AIDS Resources Emergency Act, named for the young man who stood up to stigma and discrimination before losing his life to the virus in 1990. The legislation, launching a program that addresses obstacles to consistent and effective HIV care confronting communities hardest hit by the virus, has been reauthorized four times since. It continues to be amended to meet the evolving needs of America’s HIV epidemic, and the evolving opportunities to end its impacts.
Dr. Anna Person is an infectious diseases and HIV physician providing comprehensive care to patients through Vanderbilt University’s Ryan White funded clinic. She is co-chair of the Ryan White Medical Providers Coalition, and has been elected to the board of the HIV Medicine Association, which produces this blog. Here she discusses the importance of the Ryan White program to her patients, and how the example it has set can inform present and future pandemic responses.
Thinking about the 30th anniversary of the legislation that launched the Ryan White program, and what that has meant to our patients has been emotional lately for me. Few pieces of legislation have been more important to the health of individuals, and to public health overall.
I think about the newly diagnosed patients I have met, who thought they would die as a result of the virus, because they have of no way to pay for the medications or for medical care. Sometimes that’s been a barrier to even showing up to our offices in the first place. For many of the patients I have seen, the hope the Ryan White CARE Act opened for them was simply that of survival.
I have watched the palpable relief that washes over a patient for the first time with the discovery of what the program can do, to navigate the maze of care, meet basic needs, and provide essential support services.
The Ryan White Program has given me hope too, as it works to deliver the basic promise that no one, due to financial constraints, due to stigma, due to discrimination or structural obstacles, should be excluded from the medical advances we have enjoyed over the last 30 years.
That’s because in the spirit of the young man it was named after, who fought to be recognized as a person with rights, the Ryan White program treats the person, not the disease.
We would not succeed without the wrap-around services we are able to provide for our patients because of that approach. Nutrition services, case management services, mental health, pharmacy assistance and management are all part of ensuring the wellbeing that is critical to the success of treatment. The Ryan White program allows us to meet our patients where they are — to not only treat their virus but all aspects of them as human beings — affording our patients the dignity and care they so deserve and are so often denied elsewhere.
The Ryan White Program has allowed us to start a clinic for pregnant women with HIV and to ensure safe delivery of infants born without the virus. It has allowed us to provide gender-affirming care to our patients in a true medical home — where their HIV is treated, and their chosen gender is supported. And it has enabled us to reach record levels of viral suppression, improving the health of whole communities because a virus that is controlled to undetectable levels by consistent effective treatment is untransmittable.
Importantly, also, the Ryan White program has shown how we can strengthen our responses to the health inequities that the COVID-19 pandemic has brought, once again, to the forefront.
The other day I saw a patient, an older transwoman who has lived through the stigma of living with HIV while transgender. She told me tearfully that she is having flashbacks to the earlier day “of the first plague — HIV.” Because often our patients have been dismissed or discounted in other spaces in our world today, our clinics and offices must be a welcoming space — where folks choose to return, because they know we are fighting for them.
The HIV pandemic and the RW Cares Act taught us that to successfully care for patients and suppress the virus, we need to address all aspects of a person’s health – from food and housing needs, to mental health and substance use disorder treatment, to recognizing the health impacts of stigma, racism, and xenophobia. This means treating communities and building communities. This means, for those of us who have the privilege of caring for patients living with HIV, that our role is not just as a doctor but as an advocate. This means that like it or not– what we do every day as healthcare providers in the field of HIV — is a political act. Not the politics of Democrats and Republicans, but the politics of advocating for what is right for our patients.
My colleagues and I will continue to fight when we see health inequities, because we owe it to those who have gone before us, those (including Ryan White himself) who have died of and for this fight and those who persist.
Anna K. Person, M.D. is associate professor of Medicine, Division of Infectious Diseases at Vanderbilt University Medical Center, clinical director of the Southeast AIDS Education and Training Center, director of education and faculty development for infectious diseases at Vanderbilt University Medical Center, Nashville, TN, and serves patients at Vanderbilt Comprehensive Care Clinic.