AIDSWatch 2017

Not about us without us

Since November, those of us living with HIV have been watching the new administration with a mixture of uncertainty, fear and anger at the current diagnosis of the Affordable Care Act, as well as the laws’ future. Just last month we gained some breathing room when the proposed American Healthcare Reform Act failed to make it to a vote, as lawmakers continued to butt heads over how to treat, and cure, the ailing condition of affordable healthcare in our country.

People living with HIV have a history of leaning into uncertainty, of going into the scary darkness not knowing what comes next, facing fear and transforming into stronger folks who thrive in spite of bad news circumstances. We do it when we face our diagnosis and seek care, when we stare down stigma and discrimination with compassion and education, and when we transform the “impossible” into “I’m possible.”

Being brave doesn’t always mean charging into battle, guns blazing. Bravery is the other side of the coin to being afraid, and the slender edge between those two sides is where uncertainty lives, and where we can decide to do something new and outside of our comfort zone. It’s time for healthcare to step outside its comfort zone, because we cannot continue to do the same thing and expect a different result…we all know what that definition is.

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The recent AIDSWatch 2017 held in D.C. brought over 30 advocates from our state who joined advocates from 35 others to bear witness to the power of affordable, integrated healthcare for those living with HIV. We shared our stories, strength, hope and ability to lean into uncertainty in the offices of Republican and Democratic lawmakers and their staff, who are themselves uncertain and unsettled about what should be done next.

The message from North Carolina lawmakers was clear: They’re unclear how to charge forward and tackle healthcare, and yet, they understand the importance of continuing to fund programs like Ryan White, ADAP (AIDS Drug Assistance Program), HOPWA (Housing Opportunities for People With HIV/AIDS) and expanding Medicare. They remember the unacceptable days of high-risk insurance pools and pre-existing conditions. They understand the cost of treating HIV.

Instead of charging forward, perhaps it’s time to stop, listen and learn from each other. One of our advocates offered help. She said, “Ask us. Collaborate with us. We’d be glad to help out and come to the table with you.” The room echoed her offer with murmurs and nods of resounding “yes.” And I thought about the uncertainty of an HIV diagnosis.

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When I first got the news that I was HIV infected, I wasn’t prepared. I was scared. A war was being waged in my body, and I was losing. My viral load continued to rise, and my immune system’s ability to fight off infection continued to drop, much like our health insurance premiums threaten to rise, while our ability to use insurance to help fund fighting off infections and other health conditions continues to weaken. The first medication I used to fight the virus wasn’t perfect — it had plenty of side effects, but it did the job. But, my doctor didn’t say, “It’s not perfect, so we’ll scrap the whole thing and start over from scratch.” Other drugs that were similar to the one I was taking were developed with fewer side effects and that worked even better, because doctors and drug researchers listened to those of us living with HIV and collaborated with us to make improvements, instead of telling us what was best for us.

We collaborated, we listened to each other and we leaned into the unknown, together. I sure wish our government would do the same with healthcare.

There’s a phrase among veteran HIV/AIDS advocates when it comes to our healthcare, our medications, HIV research and laws that govern our bodies and ourselves: “Not About Us Without Us.” We know a little something about facing fear, leaning into those uncertain places that scare us rather than charging head first into battle. We face stigma, discrimination and disease without a plan or a roadmap, and we do it because we’ve decided to stop being helpless and ask for help instead. I sure wish our government would do that, too.

At AIDSWatch 2017, the tables were turned. Those of us living with HIV have a lot we can teach our lawmakers in Washington about how to surrender, listen and lean into uncertain times, choosing a new approach to collaborate with the people, rather than defending politics as usual.

I wonder when they’ll listen.

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