Sometimes I'm asked what motivates me and keeps me going in the work that I do. I often think about this question and conclude that it's a variety of issues that collide and inspire me to keep focused on the important work we do in the HIV community. Lately, I've been reflecting on this question a lot and want to share with you an example of what makes me tick.
A few weeks ago while I was in the doctor's office taking care of my own health, I received a text from a friend who said "I just tested positive, can you help me?" I spent that evening with him assuring him he has his full life ahead of him. We fortunately do have the tools to take care of him. I think I was able to help him feel better that night but he's now struggling with depression and shame. I'm confident he's going to be fine, but it's been a really tough few weeks for him.
My friend started taking Truvada as pre-exposure prophylaxis (PrEP) about 8 months ago. When he went back for his second 3-month check up and went to the pharmacy to pick up his prescription refill for Truvada, he realized that even with the Gilead copay program he couldn't afford the 50% co-insurance. He even tried a few other options to gain access but he was not plugged into the right resources and was unable to afford the co-insurance. So he stopped taking PrEP. Two months after he stopped PrEP, he tested positive.
Our system failed my friend. Sure, his behavior contributed, but this type of systemic failure has and continues to be an everyday occurrence for far too many Americans, especially for Black and Latino communities. The Centers for Disease Control and Prevention's (CDC) recent release of data projecting half of all Black gay men and a quarter of Latino gay men will be diagnosed with HIV in their lifetime is just the latest example how the public health community and our larger social, political, and economic structures continue to fail the most vulnerable communities in our society.
So often times, the reason I feel motivated to continue our work is that we need to strengthen systems like the one that failed my friend in keeping him negative. He didn't understand as I told him why people fall through the cracks when there are tools available to keep us healthy. For all of us in the HIV community, this means it's our job to make sure we do everything we can to shore up our safety net programs and ensure that information is available about how to access them. Regardless of if the people who use these systems understand how things work (or don't work).
At NASTAD, that means all of us, including those of us who so ably support program staff to do their work, need to work together to correct social injustices and strengthen our often-broken systems. Over the last year, we have been even more intentional about this focus thanks to one of the final parting gifts from our former Executive Director, Julie Scofield. Julie made an organizational commitment and investment in integrating the Black Lives Matter movement at our staff level. This does not mean that other lives (e.g, Latino, Asian, White, etc.) don't matter. In fact, nothing could be further from the truth. However, at this moment in time, police brutality, the prison-industrial complex, and major disparities within public health have converged to create a perfect storm of inequality for Black people that we must begin to address differently than we have in the past.
Beyond the Hashtag #Blacklivesmatter
Throughout the process of integrating Black Lives Matter into NASTAD's work, we have been pushed and challenged; asked to think critically on how we as an organization could show -- through our work -- that Black lives matter in public health. In spite of the many tears and disagreements, our organization emerged stronger and more committed to demonstrating the importance of health equity for Black lives across all our programmatic work (i.e., health systems integration, policy and legislative affairs, health care access, prevention, and drug user health, both domestically and abroad).
What does this mean for PrEP? We must rapidly scale up PrEP, treatment as prevention, and access to STD treatment and prevention as these are the tools we have that will reduce new infections. The thrilling advances of PrEP and treatment as prevention have ushered in a new prevention paradigm -- one that requires collaboration across HIV care and prevention and one that depends on culturally appropriate clinical providers. Although there is one person documented to have been infected with a multi-drug resistant virus while on PrEP, these resistant viruses are incredibly rare and PrEP remains a remarkably effective and sound prevention method. Despite their promise, we will not be successful in capitalizing on these interventions if we cannot expand access to medications to the individuals and populations who need them the most. Everyone who is living with HIV should have access to and be taking antiretroviral treatments to achieve viral suppression. I know it's saved my life. Our federal and state governments must change policies and allow PrEP services AND medication to be purchased with public funds. And only 1 in 3 providers even know about PrEP. We must increase our work with providers to be more comfortable talking with their patients about sex -- we ALL have it and we need to be talking about it.
We need to do more to prevent failures like what happened to my friend from becoming routine. That doesn't mean we aren't all working hard, it just means I encourage us to stay focused on what matters: preventing new infections and taking good care of those living and struggling every day with disease.
Murray C. Penner is the executive director of the National Alliance of State and Territorial AIDS Directors. NMAC thanks NASTAD for their years of partnership and their leadership to end the epidemic.