Aging With Dignity While Living With HIV
By Isobel Healy, J.D., M.P.H. | Legally reviewed by Bridget Molitor, J.D. | Last reviewed June 21, 2023
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Thanks to the lifesaving medical advances of the last three decades, people with HIV are living much longer and healthier lives than they expected, creating a need for culturally competent senior services for older adults living with HIV.
Approximately 1.2 million people in the United States live with HIV (human immunodeficiency virus) and over half of them are at least 50 years old. While HIV can affect anyone regardless of sexual orientation, gender identity, race, ethnicity, ability, or age, HIV disproportionately impacts men who have sex with men (MSM) and communities of color.
Need for Support for Older Adults With HIV
The Administration for Community Living (ACL) reports that older adults account for a growing number of new HIV infections.
In addition, older adults have the longest delay in being diagnosed with HIV than any other age group. In 2015, 50% of people aged 55 and older testing positive for HIV have had the virus 4.5 years before getting diagnosed, demonstrating a need for increased HIV testing and prevention efforts for older adults.
Many LGBTQ+ older adults (OA) living with HIV were diagnosed in the 1980s and 1990s when a positive test equated to a death sentence because so little treatment was available. Life expectancy was short and developing a cohesive elder care plan to support aging in place was certainly an afterthought.
LGBTQ+ OA living with HIV pioneered to the benefit of younger generations through their lived experiences, work, and activism. However, because HIV prevention efforts have historically been focused on teens and younger adults, LGBTQ+ OA are often overlooked when it comes to help and resources.
Since one in six new HIV diagnoses is for an individual age 50 or older, more funding, education, outreach, and advocacy should be dedicated to LGBTQ+ OA living with HIV and complications such as HIV-associated dementia.
Resources for Older Adults Living With HIV
- If you believe you have been exposed to HIV, you can find a local testing center through the HHS Testing and Services Locator. Many organizations offer free or reduced-cost testing. Home HIV testing kits are also available, depending on your state's laws.
- If you test positive for HIV, immediately inform your health care provider as well as anyone you have had sexual contact with so they can get tested too.
- If you meet certain income requirements, you may qualify for medical care, prescription drug coverage, support services, and other resources through the Ryan White HIV/AIDS Program. You can find the HIV/AIDS Hotline for your state here.
As a person living with HIV, you may encounter discrimination from people who do not understand that HIV is transmitted in very limited ways. Organizations working to promote culturally competent support for LGBTQ+ OA and people living with HIV include:
- SAGE: SAGE USA offers services to ensure LGBTQ+ elders and others living with HIV can age with dignity.
- HRC: The Human Rights Campaign works to debunk HIV myths.
- ACT UP: The AIDS Coalition to Unleash Power was founded in 1987 to "change the history of HIV."
Protection From Discrimination
The law provides protection from discrimination for people with HIV/AIDS under:
- Section 504 of the Rehabilitation Act of 1973
- The Americans with Disabilities Act (ADA)
- Section 1557 of the Affordable Care Act
If you have experienced discrimination due to your HIV status, you can file a complaint with the Office for Civil Rights (OCR). You can also reach out to an attorney who specializes in representing LGBTQ+ clients and people with HIV/AIDS.
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