With the power to transform comes the need for transformation

In 1998, I got my first job in the HIV field as a peer education coordinator in Cleveland, Ohio. I was 23 years old. We were at the very beginning of implementing the very first wave of antiretroviral regimens. While this in and of itself was a revolution that saved countless lives, it was not without its challenges. These regimens involved medications, all taken at different times of day, some with food, some on an empty stomach. Some people got some pretty severe side effects from the early medications. Some of those side effects caused physical changes to the body and essentially “outed” people as living with HIV, which created another layer of stigma.

And here we are 25 years later, having moved from that place to single-tablet regimens, many with very few side effects. And then PrEP came along in 2012, revolutionizing HIV prevention, just as condom use was beginning to wane in the U.S. And now we’re on the dawn of a new shift in HIV treatment and prevention: the era of long-acting injectables. In my 25 years of working in HIV, I could not have imagined these kinds of breakthroughs in biomedicine would be possible.

While these advances are something to celebrate, we are far from the end of the road. Technological gains only go as far as people know about them, and systems are developed, enhanced or created to ensure people have access. And this is where we as a nation, as a public health community and as a planet of humans struggle. Just like with the first ARV therapy, and the first PrEP pill for prevention, we’re now four years into the FDA approval of the first long-acting ARV therapy and we are several years away from really implementing these long-acting medications to truly see the impact they can have on the lives of people (whether living with HIV or in need of PrEP), and on the HIV epidemic itself. It takes us far too long to move these innovative inventions to the point where they become medical miracles experienced by everyone who needs and wants them, regardless of race, ethnicity, national origin, religion, sexual orientation, gender identity, sex assigned at birth, pregnancy status or income.

When I started PrEP in 2015, I too became fully aware of all the barriers in place. It took two days and lots of phone calls from the time the prescription was written to get the meds. I was forced to call my insurer every month to get prior authorization before they fulfilled the prescription.

It takes us far too long to move these innovative inventions to the point where they become medical miracles experienced by everyone who needs and wants them.

And even then, I was forced to get my PrEP meds from a mail order specialty pharmacy. As someone who lives alone and travels a lot for work, this was sometimes a nightmare to coordinate every month. When I was going through these challenges with daily pill-form PrEP I often thought to myself, if I was 20 years old instead of 40 years old, and living at home or in a college dorm, I would have given up. I definitely would not have had the PrEP meds sent through campus mail or delivered to my mom’s house. It gave me a greater appreciation for what people living with HIV and other chronic conditions have to go through, in their case, to survive.

In this issue of POSITIVELY AWARE, we take a look at long-acting injectable treatment and PrEP. The articles included speak to the humans involved downstream, and what their experiences as patients, researchers, advocates and medical providers of long-acting treatment or PrEP teach us about how useful these products can be. But the authors here also tell us how far we have to go before they reach their full potential. And the full potential to save lives, to prevent HIV diagnoses among people more vulnerable to HIV, has everything to do with our ability to transform systems of care to more quickly and easily implement these new tools.

I have personally heard stories of people being newly diagnosed with HIV and refusing to take pill-form ARVs and that the injectable saved their lives. I’ve heard from providers that many cisgender women they speak to about PrEP refuse the pill, but are very interested in the injectable for the privacy it offers them. We hope that this issue of Positively Aware generates discussion among patients, researchers, advocates and providers, and becomes another stimulus to create new and innovative access points. It took us nearly a decade to do so with both ARV therapy and with PrEP.

Let us do better, more and faster with each new innovation.