When President H.W. Bush signed the Americans with Disabilities Act in 1990, he failed to explicitly mention that people living with HIV/AIDS are also protected from employment discrimination. Implanting in society the fact that such discrimination is illegal might have helped staunch the misconceptions that have perpetuated bias and the continued criminalization of people living with HIV.
“We have not come nearly far enough in educating the public about HIV and in reducing stigma and discrimination. Fear and ignorance about HIV and discrimination against people living with HIV remains a serious problem that both marginalizes people and poses barriers to treatment and care,” said Lambda Legal HIV Project Director Scott Schoettes on World AIDS Day.
Perhaps most shocking is the fact that discrimination against people living with HIV (PLWH) continues in Los Angeles County, according to a new study conducted by the Williams Institute. In what executive director Brad Sears (pictured) describes in an email to supporters as their largest, most comprehensive legal needs assessment study of PLWH, what they learned “just blew us away.”
Ayako Miyashita, Amira Hasenbush, and others from the Williams Institute interviewed almost 400 PLWH as they waited at food banks, or participated in support groups, and during education and community events “from Long Beach to Pomona; from Boyle Heights to Malibu,” Sears reports. Over half reported incomes under $10,000 a year; 20% were cisgender women (whose gender assigned at birth matches their personal identity), 9% were transgender women, 44% were Latino, and 38% were Black.
During conversations lasting between 20 minute to an hour about their lives, their health and other issues, the researchers found that:
- Almost everyone we interviewed (97%) reported experiencing at least 1 legal issue in the past year.
- On average, respondents reported having over 6 such issues in the past year alone. Some of the top areas included consumer law and debt (48%), accessing health care (46%), housing (43%), and immigration (18.9%).
- Over 1 in 4 reported experiencing HIV discrimination within the last 5 years (28%) – 16% within the last year alone. Of respondents who reported experiencing discrimination within the last year, over half experienced discrimination in health care settings, one third in employment, and almost one fifth in housing.
- Despite the large number of legal needs, only 16% of individuals who identified a legal need received legal assistance. Of those who tried to access legal services, 20% percent felt that their legal provider was insensitive to people living with HIV.
Sears says the study documenting needs, barriers and the impact on health and income is ongoing and will serve to inform not only policy-making in LA but the rest of the country, as well. Such specific research can help inform government and public officials tasked with implementing policy—such as the Obama administration’s proposed rule change to Medicare and Medicaid in a post-DOMA world—as well as empowering PLWH themselves and add research to other efforts operating off of anecdotal information.
The National Health Law Program, for instance, recently reported that:
The Affordable Care Act (ACA) was supposed to bring new protections for people living with HIV/AIDS, but Floridians and others across the nation still face considerable discrimination. It appears as though some insurers are structuring their prescription drug benefits to illegally discourage people with HIV/AIDS from enrolling in their health plans, such as placing all generic HIV drugs in the highest cost tiers and requiring prior authorization. NHeLP and The AIDS Institute filed a civil rights complaint asking federal officials to immediately stop four Florida insurers from taking such actions. Since then, two of those insurers, Cigna and Coventry, signed consent orders with Florida’s insurance regulator, announcing that they will restructure their HIV prescription benefits and remove barriers to HIV prescription drugs. CMS has also taken note and, in its proposed rules for 2015, agreed that placing all medications used to treat a specific condition discriminates against people with that condition. These are important steps and send a strong message to insurers across the nation.
In LA, the Williams Institute is the research partner of a new effort—the Los Angeles HIV Law and Policy Project (LA HLPP), a new collaboration with the Disability Rights Law Center, Inner City Law Center, and the Los Angeles County Bar Association.
Apparently LA HLPP has already helped 500 PLWH. The Williams Institute’s shocking research can be used by even the powerless as a sharp weapon to start cutting through the stigma, the ignorance and the blatant discrimination that still persists, even in one of the most progressive counties in the nation.
If you are a person living with HIV and have a legal question, call LA HLPP’s toll-free intake line at: 1-855-259-4364 or visit their website: http://lahlpp.org/.