States weigh how to protect older adults from HIV-related discrimination in health care
A man receives an HIV test at the Whitman Walker Clinic in Washington, D.C. Charles Ommanney/The Washington Post via Getty Image
More than half of Americans living with HIV are over 50. For this growing population, discrimination can compound health challenges.
“I was supposed to be dead by now,” said Tez Anderson, a 65-year-old who’s been living with HIV since 1983.
Doctors at the time gave him two years to live, he said, a common life expectancy for someone diagnosed with HIV before treatment became available in 1987.
But Anderson defied the odds and today is the president of a nonprofit advocating for people living long-term with HIV.
“It feels like the world has moved on [from] HIV,” he said. “Meanwhile, there are those of us who lost more friends than we can count, more funerals than we can count.”
More than half of the 1 million Americans living with HIV are over 50, according to the most recent data. And about one third of those 55 and older were diagnosed for the first time when they already had late-stage HIV.
As people who survived the 1980s HIV/AIDS epidemic grow older, they grapple with age-related health complications on top of or exacerbated by a positive HIV diagnosis. HIV can, for instance, increase the risk of cardiovascular disease, osteoporosis, dementia, frailty and some cancers.
And while federal laws bar nursing homes, long-term care facilities and other health providers from discriminating against people living with HIV, bias still exists, Jen Laws, president and CEO of the Community Access National Network, an HIV/AIDS-focused policy group, said in an email to Route Fifty.
Half of adults over 50 living with HIV faced stigma from health care providers, according to a 2020 survey of 1,086 people from HealthHIV, a nonprofit dedicated to improving HIV-related health care. A quarter of respondents also reported experiencing ageism and homophobia, respectively.
Last August, for example, a New Jersey-based home health care provider reached a settlement with the U.S. Health and Human Services Department and the U.S. Attorney’s Office in a court case that alleged the provider denied services to a woman because of her HIV status.
Federal legislation means “very little when those tasked with enforcing them are underwater, overburdened, and under-resourced as much of the federal government side of civil rights actions often are,” Laws said.
But states can help strengthen federal anti-discrimination policies through state-based legislation, guidance and enforcement actions, he said.
One way states are trying to ensure aging people with HIV get the care and services they need is through HIV and long-term care bills of rights. The laws vary by state, but generally bar discriminatory practices such as determining a patient’s admission to a long-term care facility based on their HIV status or refusing to offer HIV treatments, said Kirk Grisham, program manager at the infectious disease initiative at Georgetown University’s O’Neill Institute for National and Global Health Law.
At least five states—California, Massachusetts, New Jersey, New York and Oregon—ban discrimination against people with HIV in health care facilities, including nursing homes, rehabilitation facilities, assisted living homes and long-term care facilities. Some cities and counties, including San Francisco and Montgomery County, Maryland, do too.
“State-level LGBTQ+ and HIV long-term care bills of rights can provide more detailed, actionable and localized protections and support, ensuring that our community members in long-term care settings receive the respect and care they deserve,” said Terri Wilder, HIV and aging policy advocate at SAGE, a national organization that advocates and provides services for older adults in the LGBTQ+ community.
New York, for instance, requires long-term care facilities to ensure staff members receive training every two years on how to appropriately interact with patients living with HIV, such as being educated on social challenges that they may face. Training could also include appropriate language to use when interacting with patients with HIV, Wilder said.
Massachusetts is the latest state to enact a LGBTQ+ and HIV long-term care bill of rights. The law prohibits long-term care facilities from discriminating against patients based on their HIV status, including barring admission to the facility, denying or restricting medical or nonmedical care, or refusing service or care to individuals. It also applies to discrimination based on patients’ gender identities and sexual orientations.
Minnesota is likely to introduce similar legislation next session, said Wilder, who has worked with state lawmakers and other LGBTQ+ rights advocates to draft a bill.
What differentiates Minnesota from other states, she said, is that the state’s legislation would include a budget request for staff training programs. Wilder said that detail could help address opposition from health care facilities regarding the cost of training requirements.
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