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New medical treatment for HIV is helping the nearly 38 million people living with the virus globally. On World AIDS Day, Celeste Watkins-Hayes, a professor at Northwestern University and author of “Remaking a Life: How Women Living with HIV/AIDS Confront Inequality,” joins Alison Stewart to discuss what still needs to be done and who needs the most help in the HIV community.
Today marks World AIDS Day. And while there has been significant progress in medical treatment and management for the nearly 38 million people globally who live with the virus, an estimated 1.7 million people were newly infected last year.
Celeste Watkins-Hayes is a professor of sociology and African-American studies at Northwestern University and faculty fellow at the Institute for Policy Research. She spent more than a decade researching inequality in the circumstances under which women contract and live with the virus. She's author of the book "Remaking a Life How Women Living with HIV AIDS Confront Inequality." And she joins me now from Detroit, Michigan.
In your work and in your writing, you contextualize HIV/AIDS, not just as a disease, but as you write, a quote, "injury of inequality." Would you explain that concept?
It's important to understand that while HIV can affect any of us, it disproportionately affects those who are grappling with other injuries of inequality — those big and small wounds to our bodies, to our families, to our communities that disproportionately affect our health outcomes. So whether we're talking about people of color, sexual minorities, low-income folks, transgender individuals, we know that people who are at the quote unquote, "bottom" of society's ladder are often at highest risk for contracting an illness like HIV. Now, why is that? Part of that is because of the social context of risk and the ways in which limited access to health care, limited access to resources economically to take care of oneself and limited access to medication make it difficult for people living with HIV and those at higher risk of contracting the illness to protect themselves.
When you think about the safety nets that we need for HIV and AIDS, what do those look like?
Well, the HIV community has over the last 30 years built a very strong safety net for people living with HIV and for those at higher risk. And it's comprised of four things. Number one, the HIV community has pushed very strongly for access to health care for people living with HIV. So when we think about the Ryan White CARE Act and we think about the AIDS Drug Assistance Program, those policies provide healthcare access and also medicines to people living with HIV. The second thing that the HIV community has done very effectively is to build a very strong support network for people living with HIV. So whether it's support groups or case management or the opportunity to be led by peer mentors, a community forms around people living with HIV to really offer the social support that they need to battle with their diagnosis and to battle the stigma that it brings. The third thing that the community does is it provides an on-ramp to political and civic engagement. So when we look at the HIV activist all the way back to the 1980s, they have built an ongoing legacy of community and political activism, where they are speaking truth to power and engaging our politicians to make sure that the fight continues around HIV. And the last thing that the HIV safety net is thinking about is economic sustainability. If you don't have food, housing, affordability in terms of all of the life's basic needs, you're not going to be able to maintain your health. So the HIV community has very effectively lobbied for ways for people living with HIV to get access to services and also to get access to assistance that can lead to economic and financial self-sustainability.
Where in this country does there need to be more work done? What region of the country?
Certainly in the South. So when we look at the strength of the HIV safety net, we know that it's pretty robust, although it can always be strengthened, but it's pretty robust in our major cities. But where we have really seen the safety net falter is in the South. That's for a couple of reasons. Although there's been activism, there hasn't been necessarily the strength of the attention around the activism for the HIV work being done. It hasn't necessarily hit our evening news, though, in the ways that it has hit our news in D.C. and New York and San Francisco and other major cities. So the South has kind of languished due to a lack of attention, lack of resources, but also a reluctance on some policymakers to expand healthcare access to people in those regions of the country in ways that have affected what we now see in terms of rising HIV-infection rates in the south.
One of the things I know that's important to you and your research in your writing is the language that we use around HIV/AIDS. Instead of saying, "living with" or "dying from," you say we should think about it as "thriving despite." Talk to me why language is so important.
So the language of 'thriving despite' is very important because it reflects our scientific moment in the epidemic. Many people who receive an HIV diagnosis believe that they have a death sentence. But due to the medical advances, people now find that if they take their medications as prescribed and reach undetectable viral loads, they can't sexually transmit the virus. And they are much more likely to have full life expectancies. So really when we're talking about HIV, it's not about dying from HIV, it's about how do you get to a place where you can live with HIV through medications and through taking care of one's health to 'thriving despite' where one can really have all of the full experiences and advantages of life due to the medications. Our key now is making sure that in terms of access and affordability, people have access and opportunities to move along that trajectory: from dying from, to living with, to thriving despite an HIV diagnosis.
Professor Celeste Watkins-Hayes, thank you so much for being with us.
It's wonderful to be with you, Alison. Thank you so much for having me.
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