Stigmas Impact on ART Medication Adherence among Young Transgender Women & HIV-Positive MSM

By: Ranier Simons, ADAP Blog Guest Contributor

One of the most essential tenets of antiretroviral therapy (ART) is adherence. Consistent administration of HIV medication is the route to well-controlled HIV disease and ultimately undetectable status. Lack of adherence prevents viral suppression, resulting in advanced disease states, can result in medication resistance, and contributes to transmission. A myriad of challenges causes key populations of people living with HIV/AIDS (PLWHA) to experience ineffective adherence. A recent report on a study conducted in several countries of Africa reveals a lack of adherence among key populations of young people due to intersectional stigma. 

Photo Source: UNESCO

The Health Economics and AIDS Research Division (HEARD) of the University of KwaZulu, Kamuzu University of Health Sciences in Malawi, the University of Zambia, and the University of Zimbabwe collaborated for a three-year research project to examine how various stigmas influence anti-retroviral therapy (ART) medication adherence in young transgender women and HIV-positive men who sex with men (MSM).[1] The study of 156 participants consisted of interviews and surveys. The purpose is to explore the experiences of intersectional stigma, develop a conceptual change model, design an intervention to improve ART adherence based on the model, and document results to create guidelines for improvement of the status quo in the South African Development Community Region.[1] Overall, fear of the study population’s HIV status being revealed and depression from dealing with the social stigma attached to their sexual and gender minority status results in poor medication adherence. 

Fear of discovery amidst the study population was nuanced. Some participants skipped doses of their medication because their living arrangements did not allow them privacy to take care of their health. They feared their medication being discovered in their belongings or being seen taking medication. Some of the participants lived in communities with social stigma of PLWHA. These young people feared their family or friends discovering their HIV status. Others feared discovery by their relationship partners. They feared their partners would desert them upon discovery of their status. In this case, skipping medication means poor health outcomes for themselves and possible transmission to their partners. Some participants even reported HIV stigma within the LGBTQ community, which they felt would make it harder for them to find partners.[1]

Others dealt with a different fear. Some of the participants lived in communities where there was increasing normalization of more acceptance of PLWHA. However, in these communities, there is still a negative stigma towards homosexuality, and in some cases, it is criminal. For the youth who were already known to be homosexual, they feared discovery of their HIV status because these communities saw it as a punishment for their sexuality. Thus, they skipped medication often or did not seek out regular treatment in medical facilities for fear of being treated poorly for being HIV positive and homosexual. 

For both the transgender women participants and the MSM, social stigma due to their sexual and gender identity caused mental health issues that contributed to a lack of treatment adherence.[1] They reported being looked upon with disdain and sometimes verbal or physical violence; navigating society as proverbial ‘black sheep’ caused depression and even suicidal ideation that made it challenging to be consistent with the self-care of ART adherence.[1,2] This was especially true for those who reported alcohol and substance abuse as a way of coping. It’s a well-documented fact that substance abuse results in poor medication adherence. 

Photo Source: The Lancet

The research project is ongoing and in the stages of synthesizing intervention concepts. The discussion of the data has spawned several priorities. One priority is finding safe avenues of adequate care regarding HIV treatment. There need to be safe spaces to receive care and medication. Additionally, mental health resources for these young people are required. It is imperative to create safe spaces to talk about what is going on in their lives and how to cope. They need mental health professionals as well as safe peer group spaces to interact and support each other. Researchers also emphasized the importance of including the experiences and perceptions of front-line healthcare providers. The study cannot change external factors such as cultural prejudices and unfair criminalization. However, creating safe healthcare pipelines and infrastructure for psycho-social support will hopefully improve ART adherence and quality of life for the young sexual and gender minorities of Zimbabwe, Zambia, and Malawi.

[1] SADC. (2023, April). Regional Symposium Report. Retrieved from https://www.heard.org.za/wp-content/uploads/2023/06/SADC-Symposium-Report_final.pdf

[2] Govender, K., Nyamaruze, P. (2023, September 25). Young people with sexual or gender diversity are at higher risk of stopping their HIV treatment, research finds. Retrieved from https://medicalxpress.com/news/2023-09-young-people-sexual-gender-diversity.html

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.   

HIV Self-Testing: Opportunities and Challenges

By: Ranier Simons, ADAP Blog Guest Contributor

In the fight to eradicate HIV in the United States, testing is a fundamental and indispensable tool. Testing is the gateway to treatment and prevention. It is the only way to identify those who are HIV-positive, not only to get them into timely, appropriate care and treatment but also prevent transmission to others with Undetectable equals Untransmissible (“U=U”). Unfortunately, about 13% of people in the United States living with HIV/AIDS (PLWHA) are unaware of their status.[1] Whereas HIV self-testing has helped to overcome this barrier, it hasn’t been without its own challenges.

Photo Source: PAHO

Many people do not test for a myriad of reasons. Some do not have access to testing facilities due to transportation issues or lack of availability in their area. Stigma and fear hinder others. Presently, some still fear being seen in a testing clinic by people in their community, while others fear receiving a positive result. Cost is a barrier to those who lack healthcare insurance and do not have access to free clinics. To increase HIV testing, medical science has developed exceptionally effective HIV self-testing. It has been an invaluable tool.

HIV-self testing, in the past, required painful finger pricking to draw blood. Now, there are oral self-testing kits, such as OraQuick, that only require swabbing of the mouth and gums. Self-testing kits are much more affordable than going into doctor's offices for bloodwork. They also allow people to test in the privacy of their own homes and ensure their confidentiality. Moreover, some organizations provide free testing kits for those who can’t afford to purchase the over-the-counter ones.

As beneficial as HIV self-testing kits are in attempting to normalize testing, especially in high-risk groups, there are downsides. Testing in private means that there are people who will be alone when they receive a positive result. Self-tests, such as OraQuick, provide a 24-hour hotline for people to use for support and guidance concerning a positive or negative result. However, for some, that is not enough. A positive result's psychological gravity could be too overwhelming for someone to handle alone speaking with a support person over the phone. Studies have shown that PLWHA are 100 times more likely to commit suicide than the general population.[2,3] In a clinical setting, trained support professionals are available to help navigate a positive diagnosis. Moreover, a support hotline number is not guaranteed to be utilized. There’s the risk that people will deal with the diagnosis in a vacuum.

Photo Source: U.S. Food & Drug Administration

Self-testing also does not always result in people seeking treatment. Doctors recommend people confirm a positive self-test with clinical bloodwork. This is to verify the result and facilitate the swift initiation of an antiviral medication regimen. Studies show that some people do not seek out and initiate HIV treatment after a positive test result.[4] This can result in poor health outcomes from progression into later stages of HIV disease. Additionally, lack of treatment can result in additional virus transmission to others.

Self-testing also has potential adverse effects on those testing negative. Research shows that self-testing does not facilitate behavior modification in those who test negative. For example, data indicates that self-testing increases incidences of condomless anal sex among men who have sex with men (MSM).[4] Receiving a negative test result in a clinical setting provides the opportunity for discussion on ways to stay negative. This can include behavior modification as well as initiation of PrEP. 

HIV self-testing reduces linkage to care by about 17%.[5] The lack of linkages to care not only impacts patients and their own healthcare, but also the community at large. In the U=U era of fighting the HIV epidemic, linkages to care are of paramount importance.

Therefore, it needs to remain a part of wide-ranging prevention efforts and needs targeted additional support. Self-tests can result in more people being tested; however, uncovering the population of unknown positive individuals cannot be the sole focus. Stimulating additional positive outcomes from self-testing will require innovation to bolster support.

[1] U.S. Department of Health and Human Services. (2023, October 3). U.S. Statistics. Retrieved from https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics/

[2] Wilder, T. (2021, October 8). The suicide rate for people with HIV is 100 times higher than the general population. The need for mental health care is urgent. Retrieved from https://www.thebodypro.com/article/suicide-rate-people-with-hiv-100-times-higher-than-general-population

[3] Cairns, G. (2021, August 11). The hardest outcome of all: HIV and suicide. Retrieved from https://www.aidsmap.com/news/aug-2021/hardest-outcome-all-hiv-and-suicide

[4] Adeagbo, O., Badru, O., Lucho, E. (2023, October 2). HIV self-test kits are meant to empower those at risk − but they don’t necessarily lead to starting HIV treatment or prevention. Retrieved from https://theconversation.com/hiv-self-test-kits-are-meant-to-empower-those-at-risk-but-they-dont-necessarily-lead-to-starting-hiv-treatment-or-prevention-213726

[5] Witzel, T. C., Eshun-Wilson, I., Jamil, M. S., Tilouche, N., Figueroa, C., Johnson, C. C., Reid, D., Baggaley, R., Siegfried, N., Burns, F. M., Rodger, A. J., & Weatherburn, P. (2020). Comparing the effects of HIV self-testing to standard HIV testing for key populations: a systematic review and meta-analysis. BMC medicine, 18(1), 381. https://doi.org/10.1186/s12916-020-01835-z

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.   

US District Court Sides with Patient Groups on Co-Pay Accumulators

By: Ranier Simons, ADAP Blog Guest Contributor

An important legal decision produced a financial win for patients on medication affordability. On September 29, 2023, U.S. District Court Judge John D. Bates struck down a federal rule left over from the Trump Administration that previously allowed broad use of copay accumulators by insurance companies, which shifted more cost-sharing to patients. For a detailed explanation of copay accumulators, please view a previous ADAP Advocacy blog post on the subject here. 

Photo Source: National Infusion Center Association

Copay accumulators, in essence, allow insurers to ‘double-dip’, maximizing profits while increasing financial burdens for patients. The accumulators allow insurers to refrain from applying drug manufacturer copay assistance payments to patients’ deductibles and out-of-pocket costs. Under copay accumulator policies, insurers pay less for medications by prolonging the cost-sharing time period before they are responsible for 100 percent of a medication’s cost.

The Trump-era rule is officially known as the U.S. Department of Health and Human Services (HHS) Notice of Benefit and Payment Parameters for 2021 (NBPP).[1] The HIV+Hepatitis Policy Institute, Diabetes Leadership Council, Diabetes Patient Advocacy Coalition, and three patients sued HHS over the rule. The win means that insurance companies must now abide by the federal rule that controlled 2020 health plans. Thus, copay accumulator programs are only allowed to be used for brand-name drugs that have generic equivalents.[1] According to a report issued by IQVIA, manufacturer copay assistance in 2022 was almost $19 billion.[2] This means insurers previously received billions in payments provided by manufacturers in addition to the overage they were predatorily siphoning directly from patients. 

The flawed federal rule allowed insurance companies to arbitrarily decide if copay assistance programs were considered a type of cost-sharing. This was based on contradictory interpretations of the law and problematic ambiguities of its language. Copay assistance should indeed be regarded as cost-sharing, given the rule states cost-sharing is “any expenditure required by or on behalf of an enrollee.”[1] Striking down the rule removes any ambiguity mandating that patients can go back to applying copay assistance payments towards deductibles and out-of-pocket maximums, thus significantly lowering their financial burden for high-cost medications.

Photo Source: National Bleeding Disorders Foundation

Health insurance policy and drug benefit design can be a bridge or a barrier to effective and optimal access to life-saving medications. High out-of-pocket costs for patients often result in medicine abandonment, poor medication adherence, or even failure to initiate necessary treatment.[3] Patients affected by copay accumulators are 1.5 times less likely to fill their prescriptions than those in high-deductible plans.[4]

The legal decision is a significant win. However, it must be aggressively and effectively enforced. The representatives of HHS attempted to use convoluted and flawed arguments to explain why copay accumulators were good for patients and how they somehow forced manufacturers to lower prices. The judge refuted their arguments, but he remanded to HHS in the event it should decide to offer new arguments concerning the legality of copay accumulators under the Affordable Care Act.[1] Swift and sweeping enforcement can ensure there is no delay in patients' financial relief. Languid implementation of the ruling will continue to harm patients while providing time for continued attempts to construct arguments in favor of the accumulators.

[1] HIV + HEP Policy Institute. (2023, October 2). Court strikes down HHS rule that allowed insurers to not count copay assistance. Retrieved from https://hivhep.org/press-releases/court-strikes-down-hhs-rule-that-allowed-insurers-to-not-count-copay-assistance/ 

[2] IQVIA Institute For Human Data Science. (2023). The Use of Medicines in the U.S. 2022: Usage and Spending Trends and Outlook to 2026. Retrieved from https://www.statnews.com/wp-content/uploads/2023/10/iqvia-institute-the-use-of-medicines-in-the-us-2022-1.pdf

[3] Simons, R. (2023, May 18). Affordable Care Act marketplace plans and drug benefit design. Retrieved from https://adapadvocacyassociation.blogspot.com/2023/05/affordable-care-act-marketplace-plans.html

[4] Silverman, E. (2023, October 3). Court strikes down Trump-era rule that allowed health insurers to broadly use copay accumulators. Retrieved from https://www.statnews.com/pharmalot/2023/10/02/trump-biden-hhs-copay-insurance-accumulator/

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.   

340B Covered Entities’ Revenue Witnessed Huge Executive Compensation Increases, Alarming Charity Care Decreases

By: Marcus J. Hopkins, ADAP Blog Guest Contributor, and Founder & Executive Director of the Appalachian Learning Initiative (APPLI)

Research conducted by ADAP Advocacy, as part of its ongoing 340B Project, and its newly minted Ryan White Grantee 340B Patient Advisory Committee found executive compensation increased significantly at 340B Covered Entities after they became eligible for 340B drug rebates as a source of revenue. In the same period, hospitals receiving 340B rebates almost uniformly saw nearly universal decreases in the percentage of charity care they provided as a percentage of revenues.

Read the ADAP Advocacy press release, here.

Photo Source: CANN

ADAP Advocacy examined total annual revenues for select Covered Entities participating in the 340B Drug Pricing Program—including executive compensation (only Chief Executive Officers, or CEOs)—charity care totals, and charity care as a percentage of annual revenues. The analysis identified trends across 340B Covered Entities, breaking them into two groups: hospitals and non-hospital grantees. It compares the year before each organization was deemed 340B eligible, one year after, five years after, ten years after, and the most recent year on file.

Across the non-hospital grantees, executive compensation increased at an average rate of 391.3%. When excluding outliers, that average was 320.2%. Across the hospitals, CEO compensation increased at an average rate of 224.9%, including outliers, and 186.8% when accounting for outliers.

Photo Source: Vistage.com

Of the hospitals examined, just three hospitals—Ascension’s St. Francis, Bon Secours’ St. Francis Xavier Hospital, and Wellstar’s Piedmont Athens Regional Medical Center—increased the charity care they provided as a percentage of overall revenues by 114.9%, 86.7%, and 13.2%, respectively. An additional two hospitals provided no charity care information. Overall, charity care as a percentage of revenues decreased across all hospitals at an average rate of 29.7%. When accounting for outliers, the average decrease was 36%.

These decreases in charity care as a percentage of total revenue come at a time when there are mixed reports about the number of Americans and households with medical debt in the United States. Different agencies and outlets report vastly different perspectives and analyses of medical debt, highlighting the need for more clarity and transparency about how medical debt is calculated and counted.

According to the Biden Administration, the number of Americans with medical debt on their credit reports fell by 8.2 million from the first quarter of 2020 to the first quarter of 2022. They attribute this decrease to streamlining by the Department of Veterans Affairs (VA) to improve access to medical debt relief for veterans with lower incomes, the purchasing and forgiveness of medical deb from hospitals and other sources using funds from the American Recovery Plan (ARP) by individual municipalities and counties, and the development of a new credit score that excludes medical debt.

Photo Source: National Foundation for Credit Counseling

Conversely, a report released by the Consumer Financial Protection Bureau in 2022 found that there was roughly $88 billion in medical debt on consumer credit reports. Since that report, credit agencies have voluntarily removed debts of less than $500, debts less than a year old, or those that have been marked as ‘Paid’ (Goldberg, 2023). Additionally, Kaiser Family Foundation (KFF) found that one out of every ten adults has medical debt and that the amount owed is at least $195 billion. 

According to Goldberg’s article in Politico, the real issue is that total medical debt is impossible to quantify in the United States “…because it hits people in incalculable ways.” Medical debt doesn’t always take on the form of debt sent to collections that will be reported on credit reports:

• Patients may be actively paying on debts owed, meaning that the only people aware of the medical debt are the holder and the patient.
• Patients may have paid medical debts using credit cards or personal loans, which again, so long as the patient remains current on their payments, would not be reflected on credit reports.
• Patients may have borrowed from family or friends and are repaying them.

These represent just a few of the potential scenarios that make the true total of medical debt impossible to quantify.

What is clear when looking at maps of households with medical debt released by the Urban Institute is that the communities where the percentage of households with medical debt in collection are largely located in the American South, including almost every county in West Virginia and South Carolina, as well as a plurality of counties in Oklahoma, North Carolina, and Texas. It is therefore important to evaluate which hospitals serving those communities are living up to their obligations of using 340B funds to improve patient care and access to care and treatment.

Editor’s Note: At the request of ADAP Advocacy’s CEO, Brandon M. Macsata, to demonstrate transparency, we’re sharing some information about compensation paid to his firm, Purple Strategy Group, Inc. (PSG). PSG is paid a monthly management fee, which covers the work Brandon does on administrative, accounting, governance, marketing, and programs. The monthly fee is $8,000 per month, which has remained at that level since 2013 without an increase. Based on budget and net revenue year-end numbers, Brandon is also eligible to receive a performance bonus up to $6,500. Additionally, Brandon gives back to the organization annually, with his annual financial contributions ranging between $2,500 and $15,000+. No fringe benefits are paid, since Brandon is a 1099 contractor and not an employee. He is eligible to receive additional compensation for special projects that fall outside the scope of work, although most years there are no such projects.

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. 

A Growing Problem, which is Potentially Contributing to Overdose Deaths

By: Marcus J. Hopkins, ADAP Blog Guest Contributor, and Founder & Executive Director of the Appalachian Learning Initiative (APPLI)

In September 2023, alarming data on overdose deaths was published in the Morbidity and Mortality Weekly Report (MMWR). In response, ADAP Advocacy and the Partnership for Safe Medicines (PSM) issued a press release, ADAP Advocacy Calls for More Awareness on Counterfeit Medicines, calling attention to an increase in the infiltration of counterfeit medications into both the legitimate pharmaceutical marketplace and the illicit drug markets. “Unlike counterfeit opioid pills which often kill instantly, counterfeit HIV medications will victimize patients silently and slowly. Treatment failure, with a whole host of health events, will be the only clue a patient and their physician will notice,” stated Brandon Macsata, ADAP Advocacy’s CEO.

Photo Source: HHS

There have been two recent very high-profile examples of counterfeit drugs entering the marketplace: Janssen’s Symtuza (darunavir/ cobicistat/ emtricitabine/ tenofovir alafenamide) and Gilead’s Biktarvy (bictegravir/ emtricitabine/ tenofovir alafenamide) and Descovy (emtricitabine/ tenofovir alafenamide).

The Janssen case came to light on December 24th, 2020, when the company released a statement warning patients, providers, and pharmacists that counterfeit versions of their highly effective HIV drug, Symtuza, had entered the consumer market through pharmacies that had purchased their drugs from distributors that were not authorized by Janssen. In an effort to alert consumers, Janssen began distributing information to providers, patients, and pharmacists with pictures and descriptions of authentic Symtuza pills and informing providers and pharmacists to reach out to patients to alert them to be on the lookout for counterfeits.

Similarly, Gilead Sciences announced on August 5th, 2021, that counterfeit versions of Biktarvy and Descovy had made their way to pharmacy shelves, again via unauthorized distributors, and again provided images of authentic pills and packaging to allow patients to better identify counterfeit products.

Both companies responded in similar ways—attempting to educate the consumer population about authentic products while simultaneously working to address unauthorized distributors. Gilead went further in 2022 by announcing that they were working to identify and sue two individuals responsible for leading and orchestrating the scheme. Their investigation found that these two individuals had directed the initial sale through suppliers created solely to sell counterfeit products. Further action was taken when an asset freeze order was unsealed revealing that 50 defendants were added to the suit. Janssen followed shortly after by announcing its own lawsuit.

And then, there’s the illicit drug market…

A September 1st, 2023, MMWR found evidence that the evidence of overdose deaths resulting from counterfeit pills increased from 2.0% in July-September 2019 to 4.7% in October-December 2021. Fentanyl was the only drug involved in 41.4% of deaths with evidence of counterfeit pill use and 19.5% of deaths without evidence.

The issue, here, isn’t that patients are purchasing counterfeit prescription drugs from pharmacies, but that they’re purchasing them from illicit sources (e.g., illicit drug dealers). And yet, these are still counterfeit versions of legitimate pharmaceutical drugs, each designed to look roughly identical to their authentic counterparts—in these cases, primarily oxycodone (the generic version of OxyContin, a powerful and highly addictive pain medication) and alprazolam (the generic version of Xanax, a drug used primarily to treat anxiety or panic attacks, and one of the most addictive benzodiazepine medications on the market).

Photo Source: Drug Enforcement Administration

Unlike HIV or specialty medications that have very specific, patented designs, both oxycodone and alprazolam have generic equivalents that can make spotting counterfeit versions more difficult. In September 2021, the U.S. Department of Justice's Drug Enforcement Administration (DEA) put out a fact sheet with an image showing the similarities between authentic and counterfeit oxycodone, and the reality is that, unless someone is actively examining each pill they take, the differences are hard to spot. At first glance, the counterfeit version looks like it’s more authentic than the real M30 tablet because the markings are clearer and easier to read.

A bigger concern, here, is that the pills that are shown to have the highest likelihood of being counterfeited are ones to which people may be highly addicted, making them less likely to check pills for authenticity, rather than to just take the pills, either orally or via smoking, the most common non-ingestion drug use route among deaths with evidence of counterfeit drug use (39.5%). This can be exceptionally dangerous, particularly among younger people who are less likely to have experience identifying and avoiding counterfeit drugs. Moreover, those with severe addictions may be driven more by the need to satiate their need than any concerns about potential overdose risks.

Two of the findings from the MMWR report were that overdose deaths with evidence of counterfeit pill use were significantly more likely to occur among young people, with 57.1% of said overdoses occurring in people aged younger than 35 and were more often to occur in Hispanic or Latino populations (18.7%). If these young people are anything like I was in my twenties, they’re not likely to check the provenance of their drugs, rather than just take them.

Additionally, this increase in overdoses impacts a region that has traditionally seen relatively few fentanyl-based overdose deaths compared to the South, Midwest, and New England: the West (Hernandez, 2023). When looking at states in the West, the rate of overdose deaths with evidence of counterfeit pill use surged from 4.7% to 14.7% in the time period examined. Researchers indicate that the type of heroin prevalent in the West—black tar heroin—is difficult to mix with white powder fentanyl, which has made it less likely to be found in Western states. Counterfeit medications, however, make it easier to introduce fentanyl into the market.

Photo Source: CDC

Note. Retrieved from O’Donnell et al., 2023.

Outside of the United States, it was announced on October 24th, 2023, that several people living in Austria were hospitalized after using suspected counterfeits of the blockbuster diabetes and weight loss drug Ozempic (semaglutide). Ozempic, made by Danish company Novo Nordisk, has been shown to drastically improve weight loss outcomes and was approved by the U.S. Food & Drug Administration (FDA) for that purpose under the brand name Wegovy. The drug’s popularity for weight loss purposes has exacerbated supply chain issues, causing worldwide shortages of the drug for patients living with diabetes. Counterfeiters are recognizing these shortages as an opportunity to bring fake versions of the injector pens to the market packaged in official boxes. Authorities in Germany and Britain have been investigating cases where a wholesaler in Austria sold these counterfeits to Germany and to two additional wholesalers in Britain. Here in the United States, similar reports of counterfeit Ozempic were reported in August 2023.

What makes counterfeit pills so dangerous is that people have come to trust in the security of pills. We assume that medications in pill form are guaranteed to be safe, even when we purchase them from illicit sellers, and we do so because we’ve been told by numerous agencies that they are safe, from the FDA who approves them to the manufacturers, providers, and pharmacists who sell them. We also assume, when we buy pills from illicit sources, that they have procured those pills from legitimate sources and are just reselling them. When counterfeit pills enter the market, whether credible-looking fakes of specialty medications or convincing fakes of generic drugs, patients begin to lose trust in the system that fails them…assuming they’re still alive to lose that faith..

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.

2023 Ryan White HIV/AIDS Program Biennial Report Now Available

By: Health Resources and Services Administration’s HIV/AIDS Bureau

The Health Resources and Services Administration’s (HRSA) HIV/AIDS Bureau (HAB) is excited to share that the 2023 Ryan White HIV/AIDS Program Highlights biennial report is now available.

To highlight innovative models of HIV care and treatment that Ryan White HIV/AIDS Program and HAB Ending the HIV Epidemic in the United States (EHE) initiative recipients implement in communities across the country, HRSA HAB publishes a report every two years. These reports provide an update of Ryan White HIV/AIDS Program and HAB EHE efforts to improve health outcomes for people with HIV and document the successes and challenges of recipients.

Titled Harnessing the Power of Community Engagement and Innovation to End the HIV Epidemic: 2023 Ryan White HIV/AIDS Program Highlights, the 2023 biennial report features seven Ryan White HIV/AIDS Program and HAB EHE recipients who have implemented effective strategies and syndemic approaches to HIV care by addressing health disparities and engaging the HIV community in the planning and implementation of programs. The seven recipients have focused on partnering with service providers to deliver innovative programs to priority populations, conducting outreach to youth, offering housing services, providing mpox vaccine distribution, facilitating peer-led engagement of transgender women, and integrating oral health services and dental training. These and other HRSA RWHAP recipients provide inspiration for leveraging community engagement and innovation to end the HIV epidemic in the United States.

Please note Harnessing the Power of Community Engagement and Innovation to End the HIV Epidemic: 2023 Ryan White HIV/AIDS Program Highlights is not copyrighted. Readers are free to duplicate and use all or part of the information contained in this publication; however, photographs require permission to be reproduced. For suggested citation, please see page ii in the report.

To read the 2023 report and previous biennial reports, please visit: https://ryanwhite.hrsa.gov/data/biennial-reports.

Editor's Note: Laura Cheever and Heather Hauck from the HIV/AIDS Bureau shared this update on October 17th via email to Ryan White HIV/AIDS Program Colleagues. No editorial analysis or comment has been provided by ADAP Advocacy.

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.

When You’re Still Sick: Living with Long-COVID and HIV

By: Marcus J. Hopkins, ADAP Blog Guest Contributor, and Founder & Executive Director of the Appalachian Learning Initiative (APPLI)

Recently release research in The Lancet has found that, in addition to Long COVID, other respiratory ailments (Acute Respiratory Infections, or ARIs), such as colds, flus, and pneumonias, are associated with a wide range of long-term symptoms more than four weeks after the acute infection (Vivaldi, Pfeffer, Talaei, Basera, Shaheen, & Martineau, 2023).

This article was sent to me by Brandon M. Macsata, CEO of ADAP Advocacy, after graciously allowing me to cancel my attendance at the most recent Health Fireside Chat in Philadelphia due to a respiratory ailment.

“I read this article and said, ‘Hmmm…sounds like Marcus.’”

And it did.

On July 14th, 2023, I attended an outdoor ABBA tribute band concert with my mother and stepfather, but left early because I was feeling sick. I got home, and within twelve hours, I could barely breathe and moving was a chore. The following Monday, I tested myself for COVID, and got a negative result, so I thought, “Okay…must just be a summer cold.”

And then, it lingered.

By August, I’d spent most of July sleeping ~12 hours a day, between sleeping at night and intermittent naps throughout the day. My waking hours were spent coughing for so long I would literally lose consciousness from the lack of oxygen and come to a few moments later to find myself slumped over in bed and disoriented.

I had to push back several deadlines with clients, and when I reached out to my Primary Care Physician (PCP, who is also my Infectious Disease, ID, doctor), they recommended I go to Urgent Care for testing, where I was given a breathing treatment while they tested me for fourteen different respiratory ailments, from multiple strains of COVID to flu to tuberculosis, took X-Rays of my lungs, and sent me home with an inhaler, a strong antibiotic, and instructions to rest.

Another week went by, and there were no changes. Finally, my ID doc agreed to see me, where I was put through another battery of tests to see if non-ARI issues were to blame for my symptoms, including thyroid function, testosterone levels, prostate-specific antigen (PSA) levels, lung function, toxoplasmosis (from my eight cats), and virtually every other disorder or disease that are common for People Living with HIV/AIDS (PLWHA). After several hours, I left with a steroidal inhaler, a new statin drug, and additional orders to rest.

Another month went by, and my symptoms continued. 

It’s been three months since my initial illness, and still, I find myself regularly out of breath, physically exhausted from simple tasks such as walking down the stairs or into the kitchen, and suffering from neverending bouts of intestinal issues. Ultimately, they determined I must have initially had a negative reaction to receiving a second Shingrix vaccine on July 12th—a claim that seemed plausible, but still unlikely.

And then, Brandon sent me The Lancet article.

These symptoms I am still experiencing align perfectly with those described in The Lancet. Patients who had Non-COVID ARIs were more likely than COVID patients to report certain symptoms, including diarrhea, sleep problems, and coughing. They were also likely to report muscle or joint pain, difficulty concentrating, and lightheadedness or dizziness (Figure 1):

Figure 1.

Regularly Reported Symptoms by Patients Dependent Upon Infection Status

Photo Source: The Lancet

While this research does not definitively answer the underlying question, “What the Hell is Wrong with Typhoid Marcus,” it does provide me with another piece of information to send to my ID specialist for consideration.

One of the most humiliating parts of living with a chronic condition, like HIV/AIDS, is having to navigate the various conversations we must have with any number of parties to explain our health issues without opening ourselves up to unwanted or undue levels of scrutiny. Some of the conversational barriers we must overcome include:

1. How do we communicate our symptoms to our healthcare providers without coming across as a hypochondriac?
• Will our providers believe us? (This concern is particularly felt by persons of color or of trans experience)
• Will additional tests or examinations provide us with definitive answers?
2. How do we communicate our health issues with our employers or clients without risking our employment or incomes?
• Will our employers or clients be understanding of our health challenges and willing to extend deadlines so that we are able to meet them?
• Will our employers or clients consider these delays unacceptable and terminate our employment or contracts? If so, is there any recourse?
3. How do we communicate our health issues to friends and loved ones?
• Will our friends understand that we may not have the capacity or ability to respond to their inquiries about our health?
• Will our family members understand that we may not have the energy or ability to live up to familial obligations?
• Will anyone be able or willing to help us pick up the slack, in terms of chores, daily tasks, or caring for dependents?

When it comes to our incomes, how will we navigate the very real possibility that our incomes will suffer if we’re physically unable to work? Will we be able to make rent? For PLWHA, is there an immediate support system in place that can quickly respond to our needs as they relate to utility and housing costs, given the dysfunction that typifies the Housing Opportunities for Persons with HIV/AIDS (HOPWA) program?

Luckily, my clients have been largely understanding and accommodating, in no small part because I, personally, am an open book when it comes to my health. Other PLWHA may have neither the luxury of being open about their health issues nor the interest in telling others about their health. This is another area where PLWHA must navigate what level of disclosure is right for them, if any at all.

So, here we are.

I am slated to fly to Washington, DC, next week to attend an in-person meeting, and…if I’m being honest, I’m not certain whether or not I will have the energy to do so.

This places me in the very frustrating position of having to explain to the organizer that I will have to attend virtually, even though I confirmed my in-person attendance in July…before all of this started.

Hopefully, I’ll be able to return to some semblance of normal health sooner, rather than later. In the meantime, I’ll keep using my inhaler and resting.

References:

Vivaldi, G., Pfeffer, P.E., Talaei, M., Basera, T.J., Shaheen, S.O., & Martineau, A.R. (2023, October 06). Long-term symptom profiles after COVID-19 vs other acute respiratory infections: an analysis of data from the COVIDENCE UK study. The Lancet. https://doi.org/10.1016/j.eclinm.2023.102251.

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.