Several months ago, the President delivered the “State of the Union Address”. To be clear, I had low expectations, really low! I think I may have choked on my popcorn when I heard the President proclaim he was committed to ending the HIV epidemic in the U.S.
Is it possible the beer I was drinking was making me hallucinate? Now, at full attention, I confirmed that he actually said what I thought he had said. Accepting the White House’s commitment to ending the HIV epidemic is a hard pill to swallow, particularly since he escalated his assault against the Affordable Care Act (Obamacare) the week after making this announcement. He has recently moved to roll-back health care services for transgender people, a highly vulnerable population at high risk for HIV infection.
Furthermore, the administration has proposed significant budget cuts for the National Institutes of Health (NIH), the primary agency that funds and conducts research on HIV, including clinical trials for new treatments and prevention. We’ve also not heard the word “HIV” spoken since he made his announcement. So is this all just talk?
Fortunately, there is a real action plan in place that has been in works by the Department of Health and Human Services (HHS) for some time. A number of agencies under HHS have been working together to develop an ambitious, but potentially achievable agenda. These agencies include the National Institutes of Health (NIH), Health Resources Services Administration (HRSA), Centers for Disease Control (CDC), Indian Health Service and the Substance Abuse and Mental Health Services Administration (SAMHSA).
This plan comes about by first understanding where HIV is concentrated in the country. While it is estimated that there are 40,000 new infections every year in the U.S., half of these infections occur in just 48 counties and a disproportionate number of rural infections occur in just seven states. This allows more resources to be channeled to these problem areas.
The primary goal of this initiative is to reduce new infections in the US by 75% over 5 years and by 90% at 10 years. We definitely have the tools to do it. Recall the rallying cry “U=U”, meaning that patients who are taking their HIV medicines and effectively controlled do not infect other people (through sex, sharing needles or any other way; see my article, Medication Adherence: The Achille’s Heel of U=U).
We also know that people can be protected from getting infected in the first place by using Pre-Exposure Prophylaxis or PrEP; HIV medicines that can block the virus from infecting a person who is uninfected (see my article, I want the protection from PrEP but I hate taking pills). The initiative plans to work toward the goal of eliminating new infections by:
- Expanding testing to diagnoses infected individuals earlier and get them on treatment
2. Maintaining infected people in care and controlled on their medicines
3. Using PrEP to prevent infection in people at high risk
4. Identifying outbreaks or clusters of infections and moving in rapidly to control them
So as I stated, we have the tools to reduce new infections. We know that U=U. We have PrEP available. So why aren’t we reducing new infections more?
I would say one major reason is that people aren’t getting tested to know of their status. Second and very importantly, infected people are not taking their medications and controlling the infection, so they continue to spread the infection through unprotected sex (sex without condoms), and people are sharing needles when injecting drugs.
The Ryan-White Care Act (RWCA), implemented through HRSA, was first passed in 1990 and created a system for providing medical care and treatment for underserved individuals with HIV infection. At that time, we only had one drug approved for treating HIV, but now we have over 30. The program provides support for the medical team of physicians, nurses and nurse practitioners, pharmacists, nutritionists, and mental health professionals. It covers the cost of medications and other pharmaceutical services and addiction treatment and counseling.
Throughout most of the last decade, I worked in clinics supported by this program. It provides a way for people without any medical coverage to get good quality care. If you want to get free confidential testing or need medical care but have no insurance, ask your health department for the Ryan White Care Clinic in your area or go to https://findhivcare.hrsa.gov/.
Because the RWCA providers are charged with helping underserved communities, they had to develop strategies to keep low-income people engaged in care, integrate social support services, provide mental health/substance abuse services, and maximize medication adherence. The RWCA oversight has always been a step ahead in training medical providers in strategies to provide care for the most challenging patients.
As a consequence, these programs have some of the highest rates of virologic suppression in their patients. Data from 2017 showed that the viral suppression rate for patients receiving care through the RWCA averaged a whopping 86%! This is quite an achievement considering the national average suppression rate is only 59.8% and considering many of these patients are complicated to manage because of their living conditions, lack of resources, other medical comorbidities (including substance use disorder and mental health diagnoses) and issues with stigma.
Another important tool is the field of research referred to as implementation science research. This type of research takes medical advances from clinical trials and figures out how to make them work in the real world. It helps us transition effective interventions into wide-scale usage to benefit the general population. The intervention could be a new treatment, a new way of diagnosing the disease, or perhaps a new alert system to remind patients to take their medicine.
Clinical trials are tightly controlled and regulated and the study participants are screened to meet eligibility requirements. For example, we know from large clinical studies that U=U is real. We also know from many well-designed clinical trails that PrEP works in all different demographics of people; heterosexual, gay, sex workers, intravenous drug users, etc. But moving an intervention from a clinical trial into the real world is a different ball game. Implementation science research is designed to overcome barriers that prevent people from benefiting from the intervention.
Consider this: We know that HIV testing is the first step in controlling the epidemic. We must know who is infected so that we can treat them. But a lot of people will not get tested even though rapid anonymous testing is available and accurate. They may feel embarrassed to ask their doctor for the test. They may not be able to take off from work to go to the health department and get tested.
So, to circumvent these barriers, an implementation research project could look at using home-based testing kits to determine if that increases testing rates. This approach protects people’s privacy and provides convenience. Another study could deploy a mobile testing van to clubs or other venues where people frequent to make testing more accessible. So with implementation science research, the question is “How do we make a certain tool work better for everyone or for a particular group?”.
As an example, the NIH supports several Centers for AIDS Research (CFAR’s), which are a consortium of research institutions in a particular city that are able to get grants for small research projects.
The CFAR’s in Atlanta, Georgia and Birmingham, Alabama have done a great deal of implementation science research targeting black gay men in rural southern communities with prevention efforts and have identified strategies that work. These men endure the double burden of the stigma of their sexual orientation on top of racism, and are often marginalized in southern communities.
In conclusion, the coordinated efforts of HRSA, NIH, Indian Health Service, CDC, and SAMHSA, guided by the good work of the Ryan White Care program and implementation science research could get us closer to ending the epidemic. Hopefully, the president will keep his hands off and let the good work continue.
Dr. Crawford has over 25 years of experience in the treatment of HIV. While at Howard University School of Medicine, he worked in two HIV-specialty clinics at Howard University Hospital. He then did clinical research as a visiting scientist with the AIDS Clinical Trials Group (ACTG) at Johns Hopkins University School of Medicine. He served as the Assistant Chief of Public Health Research with the Military HIV Research Program where he managed research studies under the President’s Emergency Plan for AID Relief (PEPFAR) in four African countries.
He is currently working in the Division of AIDS in the National Institutes of Health. He has published research in the leading infectious diseases journals and serves on the Editorial Board of the journal AIDS. Any views and perspectives in his articles on blackdoctor.org are not representative of any agency or organization but a reflection of his personal views.