It began with a death and a lingering question. After a friend—an advocate who knew what to do to stay alive—died of an AIDS-related cause a few months ago, I was left wondering why. Together with other deaths in the news of people “unexpectedly” dying the same way, it felt like a tragic trend.
I wanted to know who the 7,000 people are who die of AIDS-related causes in the United States each year and why it happens. In the months that followed, I spoke to more people than I have ever interviewed for a story before: people living with HIV, doctors, case managers, care coordinators and nurses.
In writing “The Truth About the 7,000,” I got more answers to my simple “Why?” than I ever expected.
The essay struck a nerve and got massive views and shares on social media. Many people know of someone who slipped away, someone they never knew might have been struggling with his or her HIV care or regimen of medications. In comments on social media and on POZ.com, people shared the challenges of maintaining a positive attitude, much less their drug regimen, over the long run.
Most significant, though, have been the comments in which folks have indicated that they, too, are struggling and have not felt safe to admit it. With all the positive news happening in this modern age of HIV treatment and prevention, one can imagine why people might feel like failures for not measuring up because they were not undetectable or not maintaining their care. These comments moved me the most because I saw people step out of the shadows and show their vulnerability.
At the recent Speak Up! conference by Positive Women’s Network–USA, board chair Barb Cardell pulled me aside to say that women were checking in with one another a little more closely and some were saying things about their lack of self-care that they had not admitted to friends before.
In a blog post on the AIDS Foundation Chicago website, Peter McLoyd shares his thoughts on the essay: “Do we talk enough about those who continue to suffer and die? With all that we know today, why are there still 7,000 HIV-related deaths each year? Can we focus on reducing the number of new infections in tandem with lowering mortality rates?”
Bruce Richman of the Prevention Access Campaign has offered to devote an hour of the “Undetectable = Untransmittable” program track at the 2018 United States Conference on AIDS to the issue of those who, for a multitude of reasons, have not achieved viral suppression so that we might begin a discussion about creating spaces where people can be candid about their own treatment challenges and look for solutions.
Why? As I wrote in my essay: “Because the statistic that 7,000 people will die simply waits, year after year, to be satisfied. Because depression and fatigue can undermine the will to live. Because people deserve the truth about life with HIV and the support to face it. Because we don’t want to be shocked all over again and left wondering why.”
Are you struggling to maintain your HIV health regimen? Do you know someone who is? Have you had frank conversations with that person to be sure? What kinds of programs or changes need to be made so that people who are falling out of care or have stopped their meds have a safe space to discuss their situation? What should we as advocates be doing about this?
Please be well. And if you are not, my friends, please reach out and talk to someone you trust.