Second-Annual Client-Level ADAP Report Released

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor

The Division of Policy and Data in the HIV/AIDS Bureau (HAB) at the Health Resources Services Administration (HRSA) has released its second annual Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report (HRSA, 2020). This report covers client-level data about the ADAP program for calendar years 2014-2018, including client demographics, socioeconomic factors (e.g. – income, healthcare coverage), and service utilization among clients enrolled in ADAP.

The 2018 report found the following:

• ADAPs served 285,000 People Living with HIV (PLHIV) in 2018;
• The majority of ADAP clients are male, and nearly three-quarters are from racial or ethnic minorities;
• White clients tend to be older than minority clients;
• More than half of female ADAP clients are Black;
• More than one-third of all ADAP clients have no health care coverage;
• Clients living at or below 100% of the Federal Poverty Level (FPL) are more likely to be minorities, female, and/or transgender; and
• The percentage of clients receiving only full-pay medication assistance has decreased, while the number of clients receiving other services, or a combination of services, has increased.

In looking at this report, one of the things that is confusing, not about the report, but in the way that HHS has classified Geographic Regions does not comport with U.S. Census Regions. This problem is not, however, unique to HHS – federal agencies have no single, standardized way of accounting for several measures – geographic regions, whether or not an area is rural, how populations are measured – each agency has its own ideas about who is whom and where they live. This means that regional reporting across federal agencies will differ from agency to agency, making it difficult to try to run initiatives that operate across state and local agencies, as funding and analysis doesn’t always align.

Those issues aside, the number of clients served increased by around 17,000 from 2017 to 2018, which is likely because more people are aware of and accessing services. I say this, because the total number of new HIV diagnoses has been steadily declining for several years. This can be seen as a partial success – a failure that people continue to contract HIV, but a success in that more people are being linked to care.

ADAP continues to be one of the most valuable programs in our nation’s healthcare system, as funds from ADAP can be used to purchase healthcare coverage for clients though “insurance continuation” – paying premiums and/or co-pays for insurance plans either purchased off the private market, or by reimbursing clients for employer-provided health insurance. 17.1% of clients currently have private insurance, 7.8% have employer-provided insurance, 14.6% have Medicare, and 10.9% have Medicaid coverage.

With the onset of the COVID-19 Pandemic, I expect the following things to occur that will make the Ryan White and ADAP Programs more important for PLHIV than ever:

• There will be an increase in new HIV diagnoses in 2020, specifically among People Who Use/Inject Drugs (PWUDs/PWIDs). One of the negative consequences of shut-downs, stay-at-home orders, and hospital/clinic/emergency room service disruptions and restrictions is that PWUDs/PWIDs were often cut off from their social and healthcare networks, including Harm Reduction Programs (HRPs) and/or Syringe Services Programs (SSPs). These disruptions did not, however, mean that these people lost access to their drug suppliers or stopped using – they simply began using less safely. This means that we are likely to see a drastic increase in both HIV, and Viral Hepatitis transmissions within that demographic – a demographic that also tends to have lower incomes and less access to healthcare coverage;
• Regular HIV testing has been disrupted, as a result of service interruptions related to COVID-19 and will likely remain disrupted until the pandemic eases. As such, it is likely that surveillance data will be spotty, at best, returning artificially low incidence counts in 2020 and potentially 2021/2022. We may not know the full scale of HIV transmission until 2023 or later, after testing rates return to normal, the two-year data lag that exists between states reporting to the Centers for Disease Control and Prevention (CDC), case confirmation, and CDC reporting of incidence and prevalence;
• Ending the HIV Epidemic (EHE) Phase II funding is not expected to begin until 2025, meaning that rural states, like West Virginia, that see HIV outbreaks related to Injection Drug Use, and other jurisdictions not included in Phase I may, plainly put, be out of luck when it comes to securing federal funds to expanding testing, surveillance, and linkage to care; and
• The economy during the pandemic has led to millions of job losses and, as a result, millions of individuals who may lose their employer-provided health insurance on top of losing their source of income. For PLHIV, this means that they will be in need of coverage, and for that, Ryan White and Medicaid may need to step in to fill that gap.

These issues mean that patients who do test positive during these times will be more reliant upon the Ryan White and ADAP Programs than at any time in the last decade.

Download the report online at https://hab.hrsa.gov/sites/default/files/hab/data/datareports/2018-hrsa-adr-data-report.pdf.

References:

• Health Resources Services Administration. (2020). Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report. Rockville, MD: Health Resources Services Administration: HIV/AIDS Bureau: Division of Policy and Data. https://hab.hrsa.gov/sites/default/files/hab/data/datareports/2018-hrsa-adr-data-report.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. 

Treatment Delays Continue to Increase for Vulnerable Patients

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor

There were numerous news reports over the summer about patients experiencing medication delivery delays being caused by the ongoing issues confronting the United States Postal Service (USPS). For patients who rely on mail-order prescriptions it is problematic. For those patients who are people living with HIV, it is even more problematic. Why?

Photo Source: NBC News

“Make certain you take your meds at the same time, every day, and never miss a dose.”

This was the first piece of advice I remember hearing about HIV medications, back in the 90s, and also when I started on my first regimen (Norvir, Lexiva, + Truvada). I had to store the Norvir capsules in the refrigerator and take my meds to work in a waterproof baggie kept in a lunchbox with an icepack – if the pills got wet, the dyes in the Truvada would melt everywhere, and it was just a freakin’ mess.

When I moved to Tennessee from Ft. Lauderdale, Florida, my Ryan White Part B meds were delivered via mail order, and I had to remember to reorder meds, every month, or I would be left with no alternatives, but to skip a dose. And skipping doses is very bad business, I was told.

“If you miss your dose, take it within 24 hours, or your virus will mutate, and you’ll become resistant to your meds, making it harder to treat!”

This was the conventional wisdom, for much of our treatment knowledge around HIV, because the older regimens had shorter half-lives (the presence of the drug in the blood decreased more quickly over time). As regimens have improved, we’ve seen 72-hour half-lives in some regimens, and research indicates that missing a single dose won’t cause the development of a drug resistance (Tong, 2017):

Wohl explained that people most commonly miss antiretroviral medication doses because of events in their life that cause chaos or get in the way of pill-taking. It’s not because HIV antiretroviral pills are harder to take than other pills or because they cause more side effects. (Tong, 2017)

When I moved from Los Angeles back to Morgantown, West Virginia, I was receiving prescriptions in three-month amounts. I had my ex send me my prescriptions via the USPS, and the first time, everything went perfectly. The second time, in July, the delivery went astray, which forced me finally get meds, here in WV, instead of relying upon my California AIDS Drug Assistance Program (ADAP) prescription to run out, but there was a sincere scare, there, that I would miss several days’ worth of Stribild.

That single mail mishap – which was apparently left where dogs were able to carry it off – resulted in a panic like none I’d ever faced; one that I’m seeing replicated all over the U.S. as a result of recent mail delays.

2020 has been a nightmare, on a number of fronts: a global pandemic, an incompetent U.S. response to said pandemic, and criminally competent administrative officials determined to disrupt and delay mail delivery in the U.S.

COVID-19’s arrival in the U.S. resulted in a very bad set of circumstances for the HIV world:

1.) For those most at risk of contracting HIV, organizations and agencies that traditionally provided regular HIV testing as a part of their services (e.g. – Harm Reduction Programs, Syringe Services Programs, Health Departments, Free Clinics, et cetera) have been forced to reduce their hours of operation, change the way they operate by limiting access to on-site facilities and reducing off-site/mobile services, or cease operation, altogether;

2.) In response to the threat of overcrowded hospitals and physicians’ offices led to extreme measures being taken to limit the number of persons allowed in buildings at any one time, with many existing HIV patients having to reschedule their visits for months later, in the hopes that circumstances would improve;

3.) For those receiving their medications via mail delivery, a number of critical changes put in place by a newly confirmed (and supremely unqualified) USPS Postmaster General have led to the destruction of mail sorting machines, the removal of overtime approvals, and an order that mail trucks leave regardless of whether or not there is still mail to load. This has resulted in mail delays of days – in some cases, even weeks – which, for people treating their HIV, can mean the mutation of their virus and the development of multi-resistant strains.

To be fair, there have always been minor snafus with mail order medications. A lost prescription; deliveries to the wrong addresses; weather-related mail delays. Since July 2020, however, these mail delays have gotten longer and more serious (Soprych, 2020).

Photo Source: The Spokesman-Review 

Medication delays create a terrifying feeling of helplessness – there’s nothing that you, as a patient, can do to make postal/parcel workers find your medications, any faster; few pharmacies have in place the ability to narrow down or track medications using any GPS tracking; depending on the price of your medication(s), insurance companies and/or Medicaid may refuse to replace lost medications.

There is an abject feeling of despair, wondering whether or not you could’ve done something differently. You run scenarios in your head of going to get your mail, and to find it waiting for you with a note from a neighbor or the carrier, apologizing for the delay. You entertain vengeful fantasies of mail carriers fired for their incompetence. All the stages of grieving, all over some lost pills.

The worst is when you try to make do by trying alternatives – purchasing individual doses from the pharmacy, is one:

Matheny called the Postal Service about his prescription and was told that employees couldn't locate his medication. He called his insurer, but it wouldn't approve another refill because the medication is too expensive.

So, Matheny has been buying a single blood thinner pill from a community pharmacy every few days, when he can afford it. He has spent more than $400 so far. (Pfleger, 2020)

I did the same, once, with my HIV medications, in Los Angeles: $600 for three days of medications. As a waiter in a sports bar, I could bring in $120, on a Friday or Saturday night. During the week, I’d be lucky to break $100. Every dollar I made, in one week, went to purchase meds for three days.

For patients who live in rural areas, however, access to a pharmacy willing to do this may be entirely out of the question. For those patients, mail delivery may be the only way they can reliably receive medications. This makes the types of consistent mail delays that have occurred since July – when many of these policy changes were introduced – wholly unacceptable. 

Worse, still, is that no one will be held accountable for the negative consequences of these policies. No postal officials who approved these “cost saving measures” will be hauled before a court of law and charged with the deaths or criminal negligence that results from these delays, because that would require a system being in place to hold them criminally liable.

So, what can be done?

Much like those patients who are relying on a crippled USPS, the only thing to do is wait.

References:

• Phleger, P. (2020, August 25). Postal Service Slowdowns Cause Dangerous Delays In Medication Delivery. Washington, DC: National Public Radio: Side Effects Public Media: Shots. https://www.npr.org/sections/health-shots/2020/08/25/905666119/postal-service-slowdowns-cause-dangerous-delays-in-medication-delivery
• Soprych, C. (2020, September 10). Mail delivery mostly on-time until July [Graphic]. Spokane, WA: The Spokesman-Review: News. https://thumb.spokesman.com/KpKPwHsKl5SlEp-AZMgy7F0rnoE=/1200x0/media.spokesman.com/photos/2020/09/10/5f5b027f540f3.image.jpg
• Tong, W. (2017, December 04). Here’s what you need to know about HIV drug resistance. San Francisco, CA: San Francisco AIDS Foundation: Treatment. https://www.sfaf.org/collections/beta/heres-what-you-need-to-know-about-hiv-drug-resistance/

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. 

Gareth Thomas: Fighting HIV Stigma with Empowerment

By: Sarah Hooper, intern, ADAP Advocacy Association, and senior at East Carolina University

The decision to disclose an HIV status has become more common over the last decade, but challenges remain. Namely, HIV-related stigma. Dating back to 1991 with the disclosure by Earvin "Magic" Johnson Jr., celebrities sharing their HIV status has helped to change societal attitudes. In late 2019, Welsh rugby player Gareth Thomas announced he was HIV positive, with the end goal to make sure that people understood HIV did not weaken him as a person. (The Guardian).

The stigma surrounding HIV has often created the false narrative of ‘this is the end’ - which is anything but true! Thomas used his massive media celebrity platform to speak, not only for himself, but others with living with HIV. Thomas wants to educate the world using hope and resiliency to end the negative stigma associated with HIV. 

Thomas is a big name within sports in the United Kingdom, and the announcement of his HIV status came just prior to the news about his marriage to Stephen Williams-Thomas. Revealing his sexuality in the world of rugby back in the early 2000s made headlines but coming out with HIV in 2019 felt just as big, according to Thomas. 

Photo Source: Huffington Post UK

“It felt much more shameful,” Thomas said. “This was something that I felt people wouldn’t understand.”

Prior to announcing his HIV diagnosis in 2019, Thomas said he ran into issues with the press wanting to reveal his diagnosis before he could tell his parents. The Sun ran a story about an ‘unnamed sports player’ who would reveal he had HIV, which upset Thomas greatly.

Thomas was disappointed in the media’s response to his HIV diagnosis, and said the media still has an appetite to expose people as HIV positive. One example of this was the negative reaction to Magic Johnson’s announcement of his HIV positive diagnosis in the 1990s, when HIV was still unfamiliar to many. Even with proper treatment and prevention, HIV still carries a stigma for many people, which Thomas felt. 

“I actually feel kind of empowered and feel like I live a freer, happier life when I don’t have secrets. I’m quite happy to shine a light on the negative moments in my life,” Thomas said. 

Photo Source: On Top Magazine

Thomas was recently tapped by ViiV Healthcare and the Terrence Higgins Trust to serve as the spokesman for Tackle HIV, which is a new public awareness and education initiative. 

Said Thomas about the Tackle HIV campaign, "Since finding out I have HIV I have learnt so much about the virus and about how it affects people living with it. HIV is still misunderstood and because of that stigma still exists. I have heard first hand stories of how deeply this stigma and self-stigma affects people living with HIV and I am determined to change this. That’s why I have started the Tackle HIV campaign."

Learn more at https://tacklehiv.org.

Celebrity transparency about HIV status has increased in the past three decades, which mirrors the general public. The announcements by celebrities, like Thomas, demonstrates that more needs to be done to combat HIV-related stigma. But every positive message (no pun intended) chips away at the negative attitudes still persisting today among some people. Thomas sharing his HIV journey, like the stories shared by many of our family, friends, and neighbors, serve as a reminder that an HIV-positive diagnosis and living a full, healthy and successful life don't have to be mutually exclusive. 

References:

• Godfrey, C. (2020, June 08). Gareth Thomas on coming out as HIV positive: 'It was my right to tell my family – not somebody else's'. Retrieved from https://www.theguardian.com/sport/2020/jun/08/gareth-thomas-on-coming-out-as-hiv-positive-it-was-my-right-to-tell-my-family-not-somebody-elses

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.