“Forgotten Survivors: Seniors Living with HIV”, Unicorn Booty, March 2015

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Forgotten Survivors: Seniors Living with HIV

Milo Todd

This post originally appeared in Unicorn Booty, March 2015.

By next year, half of the Americans living with HIV/AIDS will be over 50 years old. This is largely due to the wide availability of anti-retroviral medications such as Atripla, which has changed the maximum lifespan for HIV+ people from 8-15 years to an estimated 51+. HIV care, quite frankly, is becoming a silver matter.

Yet despite the ongoing push to help people who are HIV-positive live longer lives, little is being done to recognize those who actually live to seniority. Government resources for LGBTQ seniors are at less than 8%, while over 89% of seniors are worried about coming out to their long-term care facilitators. That’s bull. Mix our culture’s horrible habit of ageism with ongoing HIV stigma, and suddenly we have a fantastic little mess on our hands when it comes to caring for our queer elders.

Eric Brus, counterpart to the AIDS Action’s Health Library (formerly the AIDS Action’s HIV Treatment and Education Library), talked with us about his work within the field of HIV+ senior care. Having dedicated his time to HIV+ people in Massachusetts for nearly 20 years, he is responsible for tracking developments in HIV, viral hepatitis, sexually transmitted infections, and related conditions.

Knowledge in care facilities is lacking. “I think that few assisted living facilities and retirement communities have much knowledge or experience meeting the needs of seniors living with HIV,” says Brus. “Many residents and staff aren’t getting the educational material they need, which leads to fear, stigma, and discrimination toward their HIV+ residents. These seniors can then feel socially isolated. Education, together with access to medical care and other supportive services, can help ensure that assisted living and retirement facilities meet the needs of infected seniors.”

Today, over 80% of seniors in the United States rely on their biological families to be their caregivers, meaning that this problem isn’t just about some uneducated nurses. To help combat caregiver ignorance, more educational programs and resources should be available, accessible, and required for anybody who finds themselves in a caregiver role.

Senior HIV care is different from youth HIV care. “Some health conditions, such as hepatitis C infection and certain types of cancers, are much more common in HIV-infected persons than in the general population, and the health consequences of these conditions often increase with age,” Brus says. “Like other seniors, many older persons living with HIV also have the common diseases of aging – such as heart disease, diabetes, and cancer. Living with multiple health conditions can be very challenging both physically and emotionally.”

One study investigated the usual healthcare costs for seniors during a five-year time period, revealing that seniors were spending $38,688 – $101,791 out of pocket during those five years despite Medicare coverage. A lifelong treatment for HIV can add on an estimated $379,668 in costs, which is not guaranteed to be covered by government insurance or Social Security.

Senior-specific programs are struggling. Few options are available when it comes to programs dedicated to the health and wellbeing of seniors living with HIV. And within those limited resources, some of them aren’t looking too…healthy. The AIDS Action’s Positive Aging, Lasting Strength (PALS) group, for example, focuses on HIV-positive persons aged 50 or older, as well as uninfected persons aged 60 and older. Brus has been a regular contributor to the group for several years, presenting at the program’s monthly health forum and being one of the volunteer instructors for the weekly yoga classes.

The program, however, is now “in transition. Its original funding stream is ending, and it is not yet clear whether funding to continue the program will be available from another source,” Brus says.

As of 2011, Massachusetts cut $2.2 million from its HIV/AIDS prevention and program funds, while California cut nearly all funding dedicated to HIV/AIDS. Since that time, a total of 31 states have cut their funding for public health and 29 states (plus DC) have cut their funding for the elderly and the disabled.

The misconceptions are still there. You wouldn’t think people still believe HIV can be transmitted through a hug, but there you go. One study showed that about 50% of Montana residents didn’t know how HIV was transmitted, while Alabama residents have been known to drive to Georgia out of fear of being recognized during testing. In Texas, a nursing home receptionist reportedly told a woman that the HIV+ patient holding her baby might “give it AIDS.” It’s 2014, people. This stuff just shouldn’t be happening anymore.

“Even though we are now more than 30 years into the HIV/AIDS epidemic, HIV-infected persons are still subjected to stigma and discrimination in housing, employment, and personal relationships,” Brus says. “HIV is NOT transmitted by casual contact, and there are concrete steps people can take to avoid infection. There is absolutely no reason to fear people living with HIV. They are our neighbors, friends, and families. People living with HIV need and deserve companionship, respect, and love – as everyone does.”

The fact of the matter is while we as a culture may be ageist, HIV is not. And it’s time we recognized that. “HIV and the risk factors for infection, such as injection drug use and unprotected sex, know no age boundaries,” says Brus. “HIV infection can occur in anyone who is exposed to the virus. Although many seniors living with HIV were infected many years – or even decades – ago, some older people are newly infected.”

To learn more about the AIDS Action Committee, visit their website.

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