Health Matters: AIDS Day: Ryan White’s Legacy
In 1984, a 13-year-old boy with hemophilia in Kokomo, Indiana received a blood transfusion. His name was Ryan White and the blood he received was infected with HIV, the virus that causes AIDS. In the mid-1980s, the fear and stigma surrounding HIV/AIDS led to tremendous discrimination against those with the disease, many of whom were gay men and intravenous drug users. Ryan’s high-profile crusade to be allowed to return to public school after his diagnosis put a more sympathetic face with the disease, and Ryan used his fame to advocate for tolerance and better treatment for all people living with HIV.
Ryan lived five years longer than expected, dying of AIDS in April 1990, one month before he would have graduated from high school. Four months later, Congress passed the Ryan White Care Act, the largest federally funded program for people living with HIV/AIDS, a program that continues to help people today. Given that December 1 is World AIDS Day, this seemed like a good time to pay homage to Ryan White and to remind everyone about the importance of reducing the risk of HIV/AIDS.
The federal Ryan White HIV/AIDS Program is currently the third largest source of federal funding for HIV care in the U.S., following Medicare and Medicaid. Locally, with the support of a Ryan White Program grant, MCHC Health Centers provides HIV/AIDS care in Lake and Mendocino Counties to about 230 patients, 90 percent of whom are virally suppressed—that is to say, their viral load is undetectable when tested. This means 90 percent of the patients we treat cannot transmit HIV to others. We’re very proud of this because it is higher than the national average viral suppression rate for other Ryan White programs, which is 86 percent; and way higher than the average viral suppression rate for HIV/AIDS patients not affiliated with a Ryan White program, which is 60 percent.
The Ryan White Program at MCHC supports patients, regardless of insurance or immigration status, providing core medical services as well as intensive case management and other support services to reduce barriers to care. We help patients navigate a complicated healthcare system that includes primary medical care, specialty care, pharmacies, and health insurance companies. We help patients understand how and why to take their medications. We help patients work through the emotional ups and downs of living with a chronic illness as well as the rejection and fear of friends, family and community members because of social stigmas that continue to be associated with HIV.
Now that antiretroviral therapy (ART) is available, patients with HIV are living long enough to face health conditions often associated with aging such as diabetes, high blood pressure, heart disease, cancer and more. Today, those diagnosed with HIV who quickly begin ART have a similar life expectancy to everyone else, but their medical care and medications must be carefully managed.
One of the most important ways to keep our patients healthy is by making sure they get their basic needs met, needs like adequate food and stable, secure housing. We work with organizational partners to this end. The small percentage of patients who are not virally suppressed are often dealing with housing insecurity. When you don’t have a safe place to go at night (or any time), making it to the pharmacy to pick up a prescription can feel a lot less urgent.
The Centers for Disease Control and Prevention recommend that every person between the ages of 13 and 65 be tested for HIV at least once in their lifetime. People with risk factors like multiple sex partners, injection drug use, or men who have sex with men should get tested more frequently; and those at high risk should consider pre-exposure prophylaxis (PrEP), a daily antiviral pill that can greatly reduce the risk of infection.
We have an incredibly experienced, compassionate and skilled HIV care team at MCHC, so much so that some of our patients who have moved up from the San Francisco Bay Area believe their treatment here in Mendocino County is better than the care they received in the Bay Area. To learn more or to schedule an appointment, call the Ryan White nurse case manager in Ukiah at (707) 472-4627. If you are interested in getting an HIV test or in learning more about PrEP, talk to your healthcare provider or call MCHC to make a new patient appointment.
Stephan Ouellette is a licensed clinical social worker and the Ryan White Program Manager at MCHC Health Centers—a local, non-profit, federally qualified health center offering medical, dental and behavioral health care to people residing in Lake and Mendocino Counties.