Where the Rubbers Meet the Road on "Ending the HIV Epidemic: A Plan for America"

By: Marcus J. Hopkins, Policy Consultant

In his 2019 State of the Union Address, Donald Trump asked for a bipartisan committee to end the HIV epidemic in the United States within 10 years. Those of us who work in HIV activism and advocacy were (and still are) incredulous, given the Trump Administration’s penchant for undermining virtually every public health initiative.

Photo Source: Business Insider

A mere five months prior to his announcement, the Trump Administration (TA) put the kibosh on HIV cure research because it used fetal tissue donated by women who have legal abortion in an effort to appease faux religious liberty activists (Wadman, 2018).

Also, in 2018, the TA released plans to take $3.8 million from HIV/AIDS programs and $5.8 million from the Ryan White HIV/AIDS Program (Kopan, 2018).

Before that, Trump “fired” the reaming members of the Presidential HIV/AIDS Council (formed in 1995 by President Bill Clinton) after six members quit the council in June 2017 in response to TA’s removal of the Office of National AIDS Policy website and Trump’s failure to appoint anyone to lead the White House Office of National AIDS Policy (Thomsen, 2017).

The announcement by Trump that his administration suddenly cares about ending HIV/AIDS came as a surprise to virtually everyone amid continually piling evidence to the contrary. There has been little evidence to support the idea that the TA is concerned with much of anything other than furthering initiatives that, in virtually every other administration, would have resulted in immediate reprisal from Congress.

So, what, really, is the TA’s grand plan to elimination HIV/AIDS by 2030? Health and Human Services (HHS) Secretary, Alex Azar, revealed their proposal, “Ending the HIV Epidemic: A Plan for America,” on February 7th, 2019 (HHS, 2019):

The plan has two primary goals: 1.) Reduce new HIV infections by 75% within five years; 2.) Reduce new HIV infections by 90% within ten years.

These goals will purportedly be reached using three major areas of action: 1.) Increasing investments in geographic hotspots through our existing, effective programs, such as the Ryan White HIV/AIDS Program, as well as a new program through community health centers that will provide medicine to protect persons at highest risk from getting HIV; 2.) Using data to identify where HIV is spreading most rapidly and guide decision-making to address prevention, care and treatment needs at the local level; 3.) Providing funds for the creation of a local HIV HealthForce in these targeted areas to expand HIV prevention and treatment (HHS).

They plan to focus these efforts on 48 high-burden counties, Washington, DC, San Juan, Puerto Rico, and 7 states with a substantial rural burden. How, you may ask? Well, they have four key strategies: Diagnose, Treat, Protect, and Respond – diagnose early, treat rapidly and effectively, protect uninfected populations, and respond rapidly to detect and respond to emerging HIV clusters to prevent new infections.

If this plan seems overly ambitious, it’s because it is.

Realistically speaking, adequately attacking the HIV/AIDS epidemic in the U.S. with the goal of ending it within 10 years is entirely possible…if we’re willing to pony up the resources required to realize that goal. Facts are facts: ending any epidemic is going to be costly, and the Feeral Fiscal Year (FY) 2019 budget for HIV of $34.8 billion dollars isn’t going to come anywhere near close to achieving this goal.

Why? Two words: “Rural America.”

At the beginning of the AIDS epidemic in the 1980s, people who lived in rural parts of the country felt “safe” from HIV/AIDS, because it “…only affected those big city queers.” This thinking dwelled in a peculiar place in the American psyche that believed that Americans largely remained in one place for their entire lives. And then, the 1950s happened…and the 60s, and 70s. As automobiles because more affordable, more Americans left their hometowns and relocated around the country to seek better opportunities and lives. Younger generations were moving out of the hills and hallows of their youths and into…why, they could just go anywhere! With this freedom of movement came certain costs – namely, the spread of infectious diseases.

Travel has always been the enemy of contagion containment, from the earliest days of commerce and conquest when trader ships brought to Europe the deadliest plagues Earth had to offer. So, too, was the case with HIV/AIDS. The idea that a sexually transmitted disease could be contained to metropolitan areas was a quaint notion. People travel to cities; people often have sex in cities (hell, there’s a whole cable series dedicated to the topic); people come back home and bring with them any STDs/STIs they might have picked up and spread them within their local communities.

What has not consistently been the case is that easy access to travel will mean that services will reach the same rural and/or remote places as those diseases. With America’s for-profit healthcare model, healthcare providers must generate a profit in order to remain open; statistically speaking, it is highly unlikely that those providers are going to opt to open locations in the very small towns where services are most needed, because the demand either doesn’t exist, or the residents can’t afford it.

Photo Source: Gina Ferazzi / Los Angeles Times via Getty Images file

Geographic barriers to care are an immense problem for a variety of reasons:

1. Remote parts of the country are not always easily accessible throughout the year – snowfall, flooding, and even seasonal road conditions severely limit both patients’ and providers’ abilities to access and/or provide care;
2. Telemedicine services are extremely limited in many of these rural areas, because high-speed Internet services and cell phone services are either severely limited or nonexistent – it takes a lot of money to fund expanding high-speed Internet access to rural areas;
3. Distances to and from healthcare service provision can prove insurmountable for many rural Americans – it’s too costly to travel by vehicle due to gas prices and vehicle maintenance; little to no public transportation exists to take people to and from appointments; a trip to the doctor can consume literally an entire day, which means lost hours at work that cannot easily be recovered.

I know these things because I have personally experienced them. I’ve moved 43 times in my 37 years on this earth and have had HIV services in four different states – Florida, Tennessee, California, and West Virginia. Only in Ft. Lauderdale, FL was it easy for me to get to and from doctor’s appointments without spending entire days. In Tennessee, it took me literally weeks to even find out basic information about the state’s Ryan White program (which did not, in 2008, have a website). In California, though I lived in Long Beach, the nearest location where I could be treated was in Torrance, CA – a mere 15.1 miles on a map, but an hour or longer drive, each way, to get to and from appointments that would last entire days.

This brings me to my current state – West Virginia. In West Virginia, I luckily live close to one of the two Ryan White HIV/AIDS Program Medical Provider clinics. That’s right – there are only two Ryan White clinics in the state of West Virginia – one in Charleston, and one in Morgantown. By Interstate travel, these two cities are 156 miles apart, meaning that everyone in the middle and on the outskirts of the state – where Interstate travel is not always available or easy to access – may end up spending hours driving to and from appointments.

Another client at the WVU Positive Health Clinic in Morgantown, WV drives two hours each way to get to his doctor’s appointments, each of which can last up to three or four hours. For him, this means up to an eight-hour day solely dedicated to accessing HIV care and treatment, traveling along poorly maintained state routes and country roads. Luckily, he has progress well enough in his treatment to be on six-month visits, but realistically, each of these trips is a hassle. If he is sick, injured, or otherwise unable to travel, that means a missed appointment with a long waiting period before he can be seen, again.

These anecdotal evidences aren’t just true for West Virginia, but for the majority of the country. All around the U.S., patients living with HIV in rural areas spend entire days just going to their HIV doctor. And this is the crux of the problem for not only the Trump Administration, but any future administration: in order to truly eliminate HIV/AIDS in the U.S. by 2030, it’s going to require a massive increase in financial and human resources to tackle reaching rural America.

Part of the TA’s proposal focuses on states that already have high rates of HIV transmission in rural areas – Alabama, Arkansas, Kentucky, Mississippi, Missouri, Oklahoma, and South Carolina. These states do have high burdens of rural transmission, with 10% or more of new infections occurring in rural areas. What the current plan fails to take into account, in my opinion, is the growing risk of infection via Injection Drug Use (IDU).

IDU is already contributing to high rates of Hepatitis C (HCV) infections in places like West Virginia. In 2015, the rate of new HCV infections was 3.4 (per 100,000); in 2016, that rate increased to 5.1; in 2017, the rate increased, again, to 9.1 (WV Department of Health and Human Resources, 2018). A majority of the Hepatitis B (HBV) and HCV cases in WV reported IDU or street drug use as the primary risk of infection.

It’s not a big leap to assume that, as was the case in Scott County, Indiana, IDU will lead to increased transmission of HIV in state with a high incidence of IDU. This means that there will need to be significant increases in intervention funding in rural states, not just in the small metropolitan cities like Charleston and West Virginia, but in areas that are less easily accessible. Those interventions come neither cheaply, nor without significant public opposition.

Frankly, I don’t believe that the current administration is either willing or able to pony up the kind of cash that will be required to fund the types of interventions needed to achieve their goal. We’re not just talking about reaching rural areas, although that’s the largest roadblock; we’re talking about hiring and training thousands of new personnel, paying for treatment for lower- and middle-income individuals who cannot afford the high price of HIV Anti-Retroviral (ARV) medications, covering transportation costs for both patients and medical personnel, purchasing testing supplies, paying for confirmatory testing and blood work (the latter of which can run into the thousands-of-dollars per patient), hiring, training, and deployment case workers to ensure medication/treatment/physician adherence. The list of things that are going to be required in order to accomplish this goal is so long and so costly, that I doubt it can feasibly be accomplished.

I’m going to be pegged as a naysayer; as a cynic. In realistic terms, what we’ve seen over the past thirty years is that, on average, they type of funding that is necessary to successfully deploy this kind of ambitious plan hasn’t been put on the table for decades. Within the HIV activist/advocacy community, we have been all but terrified to reopen the Ryan White program to reauthorization, out of fear that a Republican legislature will gut the funding down to the bare bones. And honestly, that’s not a fear that is without precedent. Outside of Defense spending, Republicans, on the whole, have been loath to increase funding for anything else without drastic spending cuts elsewhere – a strategy that is both shortsighted and destructive to public health initiatives.

I’ve attended numerous conferences where statements like the following have been made:

“The primary job of big HIV organizations is to ensure that we don’t lose any of the $35 billion dollars in funding that we have.”

This quote (which is a direct quote from an Atlanta area activist/advocate) is terrifying, because it not only indicates that there is fear amongst organizations that those funds will be cut, but that we cannot – and should not – be vocal about our needs. If we make too many waves or too much noise, we risk losing funding. As a result, we cannot be ambitious or innovative in tackling the rural HIV crises we face, because to do so will risk the funds we’re already using to address the underserved needs of people in urban areas.

So, yes – when it comes to the Trump Administration’s grand plans for HIV prevention, I am skeptical that they will succeed. They haven’t even tried to produce enough staff members to work on their own initiatives; what would lead us to think that they would do so to address a problem as widespread as HIV?

References:

• Health and Human Services. (2019, February 07). What is ‘Ending the HIV Epidemic: A Plan for America’?. Washington, DC: United States Department of Health and Human Services: HIV.gov: Office of HIV/AIDS and Infectious Disease Policy: Federal Response. Retrieved from: https://www.hiv.gov/federal-response/ending-the-hiv-epidemic/overview
• Kopan, T. (2018, September 20). Trump admin moves $260M from cancer research, HIV/AIDS and other programs to cover custody of immigrant children costs. Atlanta, GA: CNN: Politics. Retrieved from: https://www.cnn.com/2018/09/20/politics/hhs-shifting-money-cancer-aids-immigrant-children/index.html
• Thomsen, J. (2017, June 17). Six resign from presidential HIV/AIDS council because Trump 'doesn't care'. Washginton DC: The Hill: Healthcare. Retrieved from: https://thehill.com/news-by-subject/healthcare/338296-six-resign-from-presidential-hiv-aids-council-because-trump-doesnt
• Wadman, M. (2019, December 13). Updated: NIH says cancer study also hit by fetal tissue ban. Science. Washington, DC: American Association for the Advancement of Science: Science: News. Retrieved from: https://www.sciencemag.org/news/2018/12/trump-administration-has-quietly-barred-nih-scientists-acquiring-fetal-tissue
• West Virginia Department of Health and Human Resources. (2018, July 01). Acute Hepatitis C Incidence Rate, 2007-2017. Charleston, WV: West Virginia Department of Health and Human Resources: Bureau for Public Health. Retrieved from: https://oeps.wv.gov/HCV/documents/data/acute_hcv_chart.pdf

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.