I moved to Los Angeles in 1982 with my first partner, Chris Brownlie. In addition to being happy to get away from the Chicago winters, we were filled with hope and excitement. And like most people, we were completely unaware of the health tsunami we were about to encounter. 1982 was the year that the first cases of what we now know as AIDS were identified in Los Angeles. Over the next decade, I would watch too many of my friends, including the love of my life, Chris, die from AIDS related complications.
Since then, I’ve also seen firsthand the unbelievable progress we’ve been able to achieve in the past 40 years as a result of community activism, smart government policies and medical advancements. I’ve spent my life fighting for sound public policies that help reduce new infections and help people living with HIV/AIDS live longer, healthier lives. Working in various areas in both the public and private sector, including the city of Los Angeles, AIDS Project Los Angeles, founding the Black AIDS Institute, and serving on the Presidential Advisory Council on HIV/AIDS, I’ve seen firsthand how good public policy can help and how bad public policy can hurt.
We still have work to do, but going from losing nearly 50,000 people a year from HIV/AIDS in the 1990’s — including more than 2,500 in LA alone — to less than 7,000 Americans dying per year today, we have made incredible strides. All of it the result of expanding access. However, the Trump Administration is threatening that progress and putting our lives back in danger through a proposed rule change to Medicare Part D.
When Medicare Part D was created in 2003, it formed protected classes to ensure people living with some of the most serious, chronic diseases — like HIV — could access the best treatments for them as prescribed by their doctor. Medicare Part D was one of the reasons for this piece of progress in the fight against HIV.
As a result of new medications, people living with HIV have been able to live long, healthy lives. More than 250,000 people living with HIV have aged into Medicare, and by 2030, that number is expected to rise above 600,000, including me.
Lifesaving HIV medications are considered a protected class under Medicare Part D, and the protected classes ensure access to those medications. Trump wants to change the protected class status and give unprecedented power to insurance companies by putting them in between doctors and patients.
By changing the protected classes, millions of people, including hundreds of thousands of people living with HIV could suffer. Trump’s proposed changes opens the door to allowing “step therapy,” which can force people to take less effective medications first before proving they don’t work and getting access the treatment their doctor thinks is best for them.
This opens the door to drug resistant viruses and threatening the lives of people with HIV and undermining prevention efforts.
These changes are frightening. They put us back on the cusp of another epidemic because people won’t be able to access the medications they need to stay healthy and keep them virally suppressed, meaning they cannot spread HIV to others.
This issue hits close to home. California has one of the highest rates of people over 55 living with HIV, and the Los Angeles area has tens of thousands of residents living with HIV. Many of them rely on Medicare Part D for their healthcare needs, and these proposed changes would be destructive to their heath.
As a Californian, as a Black man, and as someone living with HIV, this is personal. I will turn 63 in April. I have lived with HIV my entire adult life. Black people have the highest rates of HIV in this country and new diagnosis among Black men remains stubbornly high. Here’s the deal, we have the tools to end this epidemic. Those tools are dependent on access and utilization. This rule attacks both. It limits access and threatens utilization of life saving treatment to people living with HIV, poor people, and seniors.
We must all speak out immediately. We must call our representatives in Congress and urge them to stop this rule from going into effect.
Phill Wilson is the founder and former President and CEO of the Black AIDS Institute.