With Legal Needs Unmet, People With HIV May Lose What It Takes to Survive

Ayako Miyashita
Ayako Miyashita

The road to achieving an AIDS-free generation focuses heavily on treating and preventing HIV infection through medicine. But many people living with HIV (PLWH) face a wide array of barriers to accessing the care they need and meeting their basic needs. If we hope to move toward a day when we no longer have to worry about HIV infection, we must look beyond medicine and pay better attention to the lived experiences of PLWH, particularly those in vulnerable circumstances.

Looking at the legal needs of PLWH provides a window to understanding the barriers people face in their daily lives. Without access to justice, PLWH are at risk of losing the very supports that make survival possible -- including income, health care and housing. In a study released last week by the Williams Institute at UCLA School of Law, we looked at the legal needs of almost 400 PLWH in Los Angeles County. Our participants were mostly low-income individuals, and many identified as gender, sexual and racial/ethnic minorities.

The prevalence of unmet legal need among the respondents was much greater than we expected to find.

  • On average, respondents reported experiencing six legal needs in four legal issue areas in the year prior to taking the survey.
  • The overwhelming majority of respondents did not look for a lawyer for their most recent legal need. Some said they did not look for help because they feared being treated badly because of their HIV status.
  • Almost a quarter of respondents who looked for help and could not find help felt the provider was insensitive to their needs as PLWH.
  • Almost all respondents experienced a legal need, and only 16% found help from a lawyer.

These legal needs included problems with the key aspects of daily living.

  • Nearly 1 in 2 respondents reported challenges in accessing health care, including accessing medical care, medication, health insurance and/or health coverage in the year prior to the survey.
  • Nearly 1 in 5 respondents reported living in unstable housing including being homeless, living in a shelter and/or staying somewhere temporarily sometime in the year prior to the survey.
  • Greater than 1 in 3 respondents reported discrimination based on their HIV status in housing, employment and health care settings in the five-year period prior to the survey.
  • Greater than 1 in 3 respondents reported being three or more months behind in payments for student loans, medical bills, credit cards, child support and/or car loans in the year prior to the survey.

Some experiences, unique to certain minority groups, were particularly troubling.

  • Latino respondents reported being particularly vulnerable to immigration-related needs. The 41% of Latinos who indicated immigration-related needs represent a population that, if deported, could be at risk of losing ongoing access to lifesaving HIV medication.
  • Gay and bisexual men reported high levels of harassment, violent attack and victimization from some other crime. At 41%, gay and bisexual men were significantly more likely to report experiences of victimization as compared to cisgender women (24%) and straight cisgender men (17%).
  • Transgender women reported high rates of interaction with the criminal justice system and were significantly more likely to report being violently attacked. As compared to cisgender women (23%), transgender women reported interacting with the criminal justice system at a significantly higher rate (41%). Looking at violent attacks, transgender women were particularly vulnerable (29%) and were significantly more likely to report being violently attacked than straight cisgender men (7%).
  • The majority of individuals who reported being incarcerated for a week or more experienced problems related to their HIV while in jail and/or prison. Of the 16% of respondents who reported a history of incarceration, 56% reported experiencing problems associated with their HIV status. This included problems accessing HIV medications (32%), being separated from others due to HIV status (41%) and being denied access to services in the jail or prison as a result of their HIV status (15%).

If you understand how HIV stigma works, and the insidious ways in which HIV-based discrimination can impact the lives of PLWH, then perhaps none of this comes as a surprise. While the results of this study are not generalizable and cannot be applied to PLWH as a whole, they illustrate that for the many people we surveyed, living with HIV boils down to overcoming challenges and barriers in all aspects of daily life.

The implications of this study might not be novel or distinct, but they bear repeating: We need more funding, more research and more education if we are going to meet the needs of PLWH. It is only by addressing these needs that we can begin to contemplate a future generation without HIV infection, whether because we have found a functional cure or achieve success in removing all stigma associated with the disease.

Ayako Miyashita is the inaugural Brian Belt HIV Law & Policy Fellow at the Williams Institute at UCLA School of Law. Previously, she provided direct legal services to low-income clients living with HIV/AIDS in Los Angeles' Skid Row area, and helped HIV-positive clients in the San Francisco Bay Area with immigration-related matters.