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The graying of AIDS: Stories from an aging pandemic

Wherever people have access to lifesaving treatment, what was once thought impossible has become increasingly common: People with HIV/AIDS are living into their 50s, 60s and beyond. As of 2015, half of all people living with HIV in the United States are age 50 or older, and by 2020 that percentage is expected to rise to 70 percent. More than 3 million people age 50 and older are thought to be "living positive" in sub-Saharan Africa alone, a number that could triple by 2040.

Ageist beliefs about who is at risk for HIV regularly get in the way of potentially lifesaving information being shared with so-called older adults. (When tracking HIV/AIDS statistics, the Centers for Disease Control and Prevention defines people over age 50 as “older adults.”) Here in the U.S., people age 50 and older are more likely to be diagnosed with HIV later in their disease progression toward AIDS than their younger counterparts; as a result, older adults often start treatment late and regularly suffer from more HIV-related health problems. Again, ageism plays a role: Whether because of lack of training or cultural taboos and social discomfort, health care providers are less likely to ask their older patients about their sex lives or substance use, and are less likely to test those patients for HIV.

Around the world, HIV/AIDS data collection often stops at age 49, so the numbers we have are often estimates based on projections grounded in data gathered on younger positive adults. What we know with certainty is that the need for aging-related HIV/AIDS services will continue to grow as future generations have the opportunity to age with the virus. But there are a lot of questions that need answers. What new medical challenges will arise from decades of living with HIV/AIDS, prolonged use of antiviral medications and aging itself? What kind of support will HIV-positive older adults need in the long term? What are we doing to prevent new HIV transmissions among adults later in life? And how can we best take advantage of the wealth of experience, passion and insights this pioneering generation has to share?

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The Graying of AIDS is a collaborative documentary project created by visual journalist Katja Heinemann and health educator Naomi Schegloff. For five years the team has worked to create media stories, multimedia art installations, innovative public health awareness campaigns with NGO partners and educational materials that engage diverse audiences. The ongoing “Stories From an Aging Pandemic” project is a participatory documentary installation and online archive. The Graying of AIDS team works with HIV-positive adults age 50 and older in a pop-up photo studio and interview station, creating a collective portrait of the first generation of adults able to grow “old” with HIV/AIDS. Thus far, more than 100 people representing 17 countries and four indigenous nations have participated in the project at the last two biennial International AIDS Conferences in the U.S. and Australia; the team hopes to travel to the next conference in South Africa in 2016 to complete the series for the 20th anniversary of HAART (highly active antiretroviral therapy), the multidrug antiretroviral therapy that made aging with HIV a possibility for so many.

Photography by Katja Heinemann, interviews by Naomi Schegloff

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