The Not-So-Benign Neglect of HIV/AIDS

The Not-So-Benign Neglect of HIV/AIDS

 “Place-Based Challenges to Equity” at the Funders Concerned About AIDS annual summit was facilitated by Trina C. Olson (PFund Foundation) and featured panelists Jason Lydon (Black and Pink), M Adams (Freedom Inc.), Isa Noyola (Transgender Law Center) and Dr. Laurie Dill (Medical AIDS Outreach of Alabama). [Photo by Lyle Kan, Funders for LGBTQ Issues]

Last week I was in Washington, D.C. to facilitate a discussion about “Place-Based Challenges to Equity” at the Funders Concerned About AIDS Annual Summit.

This conference happens every year and those of us leading pieces started preparing this summer – well before the general Election. Over 100 people were gathered at the two-day conference to discuss the financial landscape for HIV/AIDS. We were reminded at the top of the conference that this is the first time this group is coming together in such uncertain times. We are at a time where we can actually talk about ending the epidemic, but we also risk sliding back to the early 1990s. We were reminded that ‘stretching every dollar’ to its fullest has been a long-held practice. But frankly, there is an eventual breaking point.

I was reminded again and again that we are in sight of a cure for AIDS. In 2017, experts anticipate there will be one million deaths caused by AIDS. This is still very much an epidemic that is claiming lives.

And it doesn’t have to.

Through the Affordable Care Act, Ryan White Act and Medicaid expansion, more people than ever before have had real access to testing and treatment. The incoming administration has pledged – over and over again – to cut these critical safety nets that protect some of our most vulnerable populations. As you might imagine, medical professionals, scientists and people living with HIV at the conference were all feeling very afraid for the future.

Funding plays a particularly critical role, and it always has, in the landscape of HIV/AIDS. Funding for research and development is critical. Funding for implementation is imperative, because unless people have access to testing and treatment, the drugs developed will not be able to make a difference. And funding for widespread and targeted communications is key because HIV tracks the margins. Racism is a defining and principle threat to equity. The intersections of health equity, racial equity and economic justice are of paramount importance in an effective fight to end AIDS. We were reminded, as a room of funders, that now cannot be a time of business as usual. We were told that if we’ve been saving for a rainy day, today is that rainy day.

The medical community has currently identified 31 communities as members of high-risk populations for HIV infection. People need to know if they are at risk, what to do to protect themselves and those they love, and need support in ending the stigma that still makes talking about sexuality so taboo in most places in America.

Benign neglect is not, in fact, benign.

Mortality has consistently been part of the story of the lesbian, gay, bisexual, transgender, queer and HIV-positive community. Through diseases, suicide and violence our communities have attended the funerals of people we hold dear – loved ones who were harassed, targeted, feeling hopeless after lifetimes of discrimination. But a body count is not something we should settle for, or ever allow to be normalized. Why? Because deaths in our community are largely preventable.

I was particularly struck by the wisdom of M Adams, Freedom Inc.’s co-director out of Madison, Wis. M was a PFund Foundation scholar and Moxie Award recipient this year. During our panel, M reminded everyone that HIV is not a disease that was bio medically designed to become an epidemic. It is not contagious through the air or through regular contact of any kind. The reason this difficult-to-transmit virus became an epidemic is the direct result of political decisions made to ignore and silence conversations about drug use and sexual activity. The avoidance of everyday, yet taboo topics, made it possible for HIV to spread into the worldwide phenomenon it is today.

It was a difficult couple of days. Yet, amidst such stark truths, was also conversation about ‘infinite hope.’ This is a phrase I found reassuring as we spoke of commitment to work in coalition; to address disparities head on, to empower, and to honor the humanity of every person that has ever been touched by this disease.

The need for funders to be nimble is critical. Needs will emerge that we have to be ready to respond to. There is no way for us to know exactly what we’re headed into. We have to be strong and adaptable. It is right to be investing in the health of people.

There is a lot of tension in this time of not knowing exactly what’s to come. We were invited to stay in the tension. We are at a point where we need to do the best we can to defend our people. And we must make an effective case for an effective response. It is time for provocative strategies and commitment to action. We will not stand idly by while access to life saving services gets ripped away.

One of the featured speakers was an HIV-positive woman who shared, “One of the reasons I am vocal is because it got too difficult to be invisible.” This is not the late 1980s; this is 2016. We see you. We hear you. We are committed to ending AIDS.

Trina C. Olson

PFund Foundation Executive Director


What Can You Do?

If you or someone you know is currently uninsured and in need of treatment options for HIV, the deadline to enroll for health insurance that will start on January 1, 2017 through the has been extended to Dec. 19.

Open enrollment for the remainder of 2017 ends on Jan. 31, 2017. Click here or forward this link to someone you know who will require healthcare for HIV treatment.