HIV and Fundamental Rights

By Jessica Bishai November 16, 2017

Ryan White was diagnosed with HIV following a blood transfusion in 1984. He was 13 years old at the time. After his diagnosis, stigma against HIV led to him being barred from returning to his Indiana school. Too many people believed HIV was caused by misbehavior and attributed such wrongdoing to Ryan. Ryan didn't give up his fight, though, and the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, passed after his death, now provides medical care and support services to more than 500,000 uninsured and underinsured people living with HIV (PLWH).

Ryan’s story exemplifies how fundamental human rights, like access to and safety within school, work, and relationships, can be hindered by an HIV diagnosis. Further, these fundamental rights are taken from people who are already disempowered; HIV disproportionately affects those of lower socioeconomic status, people of color, people who inject drugs (PWID), and justice-involved communities.

One of the biggest consequences of HIV is the stigma that accompanies it. That stigma prevents PLWH from seeking diagnoses or access to care; roughly one in eight PLWH worldwide is being denied care, likely at least in part because of stigma. PLWH are often subject to family, peer, and broader community exclusion, harassment in school or work, and mental health issues. As of 2015, 35 countries posed travel restrictions for PLWH. This stigma has harrowing impacts; in Bangladesh, one in five women living with HIV feels suicidal because of the stigma they experience.

The requisite health care for HIV affects the daily lives of PLWH in and of itself. PLWH need to constantly worry about their health. They must keep track of when their doctor’s visits are, when to take their medications and subsequently how much medication to take, when to fill prescriptions, and more. On top of the strain on mental and emotional well-being that accompanies a diagnosis, paying for medications and appointments creates a tremendous financial burden on PLWH.

Because of this, AIDS Drug Assistance Programs (ADAPs) can serve as a source of empowerment; they engender better access to care. ADAPs make life at least a little bit easier for PLWH. By removing or ameliorating the financial burden caused by HIV, and by addressing co-morbidities like hepatitis C (HCV), ADAPs create some normalcy in clients' lives.

Other highly stigmatized conditions that are prevalent in PLWH, like mental health conditions and substance use, must also be addressed to achieve equity for PLWH. The Ryan White HIV/AIDS Program (RWHAP) provides core medical and support services that help tackle these conditions through its Part B program. These services include mental health services, substance use services, medical and non-medical case management, food, housing, and medical transportation services. These services not only help to improve the health and wellbeing of clients, but also help end the stigma against these highly vilified conditions.

We know ADAPs are effective. The National ADAP Monitoring Project: Annual Report (The Report) indicates that 77% of ADAP clients were virally suppressed in 2015, compared to a national average of 49%. Viral suppression allows PLWH to retain some degree of normalcy in their lives and allows them to experience and participate in communities and societal structures (e.g., school, the workplace). Read The Report for more information on how ADAPs and the RWHAP are helping people break out of the vicious cycle of disease and reach their full potential.