Most modern epidemics end with a vaccine or a cure. HIV has neither. We are betting on a biomedical solution that has a huge behavioral mountain to scale. Unlike vaccines or a cure that required a limited number of visits to your doctor, our biomedical solution asks people living with HIV to stay in healthcare and adherent to their meds for the rest of their lives and for people on PrEP to stay in healthcare and adherent to their meds for as long as they are sexually active.
Retention in healthcare and adherence to meds is the same challenge facing people living with HIV and people on PrEP. Our services are great at linkages; it is retention that falls short.
HIV is both an infectious and a chronic disease. We have not been very successful with either. We have a cure for most STDs and a vaccine and a cure for hepatitis, but we have not stopped either of these infectious diseases. We have treatments for people with high blood pressure, high cholesterol, or diabetes but we often fail to prevent the diseases that result from these chronic conditions.
Can you understand why folks might think our chances are doubtful at best?
There are 400,000 HIV-positive Americans who have fallen out of HIV care or are unaware of their HIV status. We have a moral responsibility to take care of people living with HIV first. However, we cannot force people into healthcare or to take an HIV test.
Solutions must address the whole person and, unfortunately, too many people in our community also suffer from trauma that can result in addiction and mental health issues. Too many studies have documented that stigma, isolation, and depression are all too common among people over 50 living with HIV.
The National Minority AIDS Council believes we are a community in trauma because we live in a world that minimizes our contributions because of the color of our skin, our gender, gender identity, or whom we love. When you are suffering with depression, it’s hard to get out of bed to take your meds or go to a doctor’s appointment.
How should trauma informed care be implemented for the most vulnerable? Right now, there are no scientifically proven interventions for retention and adherence into HIV care. Four hundred thousand is a large number. What programs can we bring to scale to reach all these people?
There is a similar challenge with PrEP. Lots of people start PrEP, but too many drop out and stop taking their meds. How can we support people to stay on meds? The federal program looks to get 1.2 million Americans on PrEP. Currently, around 225,000 American use it to stop HIV transmissions. While the focus starts at enrollment, retention is key to the long-term success of a PrEP program. 1.2 million people on PrEP is a large number and there are no scientifically proven interventions to retain and bring to scale this many people.
Over the next few months, around $30 million in planning grants will go to 58 target jurisdictions to build a plan to end the HIV epidemic in their city, county, state or nation (Indian country). Their plan should reduce HIV transmission by 75 percent percent in five years (2025) and significantly increase the number of people retained on PrEP in their city, county or state. But there are no scientifically proven interventions for these target regions to implement. So how can they plan? Like so many things in life, we are building the plane while we fly it.
Usually by this point I try to say something heart-felt to give hope and inspiration. In truth it is up to us and our federal partners. There are very real competing forces. Why are we helping them? I really don’t know if we will be successful. This is not a sure thing and we need to be prepared for setbacks. Leadership needs to be continually questioned and challenged. Right now, nobody has the answers, so don’t be fooled by the person who says they know what to do. When I’ve said this will be a test of our leadership, I mean it.
We are probably not going to get another bite at the apple. This has to be our best attempt. Solutions must be provided for all the communities that are highly impacted by HIV. Government driven solutions are not solutions. While we’ve been very successful in reaching the communities we’ve reached, there has always been a core of people who have eluded our efforts.
So, what can we do? Certainly not the same old thing. This is a time for innovation backed by the implementation science that supports the replication of success. That is why the Centers for AIDS Research(CFARs) are so important to this process. They will work with the jurisdictions to document the implementation science needed for Congress to approve additional funding to expand the programs nationally.
Plans to end the HIV epidemic must:
* Lead with race
* Prioritize people living with HIV
* Prioritize people living with HIV who have fallen out of care
* Prioritize retention in healthcare and adherence to meds
* Include community leadership that reflects the local epidemic
* Include community centered and community focused solutions
* Hire staff that reflect the local epidemic
* Be based on effective models with science longer then six months
* Be scalable to bend the cure of new infections
* Bave a huge behavioral component to the solution
* Include ending the STD and hepatitis epidemics
* Understand that wrap around services like housing, mental health, food, employment, transportation, and other core services make a biomedical solution possible.
We can’t end the HIV epidemic in America without the leadership and full participation of the communities highly impacted by HIV. This must be a community driven process to be successful, working collaboratively to build real solutions that speak to the realities of communities that are hard hit by HIV.
Since 1989, Paul Akio Kawata has served as executive director of the National Minority AIDS Council (NMAC), the premier organization dedicated to building leadership in communities of color to address the challenges of HIV/AIDS. Under Kawata’s direction, NMAC implemented the first HIV treatment education programs in the United States targeted to minorities, and increased its membership from 300 to more than 3,000 agencies and groups.