Americans with Disabilities Act Negates Tennessee HIV Criminalization Statute

By: Ranier Simons, ADAP Blog Guest Contributor

Christmas has come early in Tennessee. December 2023 began with a victory in the fight against HIV criminalization in the Volunteer State. As a result of complaints filed by the Center for HIV Law and Policy (CHLP), the U.S. Department of Justice found that Tennessee’s enforcement of its aggravated prostitution statute violates the Americans with Disabilities Act (ADA) by specifically targeting people living with HIV (PLWHA). CHLP hailed the decision, "CHLP Made the Call and the DOJ Answered."

According to the Centers for Disease Control & Prevention (CDC), 35 states currently have laws that criminalize HIV exposure, which fall into several categories. They are either HIV-specific laws regarding actions that can potentially result in HIV exposure, sexually transmitted disease (STD) or communicable disease exposure laws that could include HIV, general criminal statutes that could be used to define actions that could possibly cause HIV or STD exposure, or laws that enhance sentences for certain crimes when committed by PLWHA.[1] Tennessee’s aggravated prostitution statute falls into the sentence enhancement category.

Tennessee enacted its aggravated prostitution statute in 1991. Prostitution in the state, in general, is only a misdemeanor crime. However, the aggravated prostitution statute converts it to a Class C Felony if the person convicted is HIV positive. Conviction of a Class C felony means the possibility of imprisonment from three to fifteen years and up to a $10,000 fine.[2] Conviction of prostitution by someone without HIV is only a Class B misdemeanor, which could result in up to only six months in jail and up to a $500 fine.[2] Additionally, aggravated prostitution convictions require registering with the Tennessee Bureau of Investigations as a sex offender. 

To add insult to injury, in 2010, aggravated prostitution was reclassified as a violent sexual offense. This means that those convicted must stay on the sexual offender registry (SOR) for life. Previously, they were able to petition to be removed after ten years.[2] Moreover, an aggravated prostitution conviction makes one ineligible for judicial diversion. Judicial diversion is when first-time offenders are allowed to enter what equates to a conditional guilty plea. If they plead guilty and fulfill the conditions of a court-defined special probation period, their charges are dismissed, and their records are expunged.[2]

The Americans with Disabilities Act defines HIV/AIDS as a disability because it can significantly hinder life activities. PLWHA are protected whether they are symptomatic or not, and those protection were reaffirmed in Bragdon v. Abbott, 524 U.S. 624 (1998). Protection under the ADA means guaranteed “equal opportunity for individuals with disabilities in public accommodations, employment, transportation, State and local government services, and telecommunications…also protects persons who are discriminated against because they have a record of or are regarded as having HIV, or they have a known association or relationship with an individual who has HIV”.[3] All of those guarantees are denied to those convicted under the aggravated prostitution statute, which subjects those convicted to undue hardship in many aspects of their lives.

Photo Source: POZ Magazine

Being on the sexual offender registry significantly affects where people can live, work, or be present in public. You may not work or live within 1,000 feet of any school, childcare facility, public park, or playground.[2] Simply being on the premises of these areas is also prohibited unless you have an express reason for being there, such as being the parent of a child at a specific place. An individual on the SOR cannot take their child to a public park to play. However, they can retrieve their child from school only if they give written notice to the school in advance that they are a registered sex offender.[2] The SOR denies people the ability to spend time with children in their families. One example is a grandparent who is on the SOR and cannot spend time alone or babysit their grandchild because they are prohibited from being alone with minors.

A lifetime registry on the SOR facilitates long-term discrimination and even homelessness. Landlords run background checks and frequently won't rent to anyone on the SOR. Once on the SOR, a person’s personal information becomes publicly available. The publicly searchable Tennessee Bureau of Investigations (TBI) SOR website lists all sorts of data such as photos, ages, names, addresses, parole information, school and work addresses, unrelated criminal history, and more. Furthermore, the website enables visitors to click on the statutes for which one has been convicted. Thus, seeing that someone is convicted under the aggravated prostitution statute means public exposure of their HIV status. This leaves a person vulnerable to hate crimes, housing and employment discrimination, and mental stress from living with their life on display.

The DOJ investigation revealed that Shelby County in Tennessee had the highest enforcement rate of the aggravated prostitution statute. In 2022, Shelby County was the residence of 74% of people on the SOR for aggravated prostitution while housing only 13% of the state’s population.[2] Also, over 90% of those aggravated prostitution arrests were Black, with a large number being Black women, both cisgender and transgender.[2] The SOR further oppresses marginalized individuals financially. Many of those convicted are low-income, making the annual $150 mandatory fee for being listed on the SOR a hardship. Additionally, being on the SOR requires reporting in person four times a year to update registration.[2] Failure to do so results in a violation, which could result in jail time.

DOJ detailed multiple legal remedies to the ADA violations to both the state government and specifically the Shelby County District Attorney General’s Office (SCDAG). The list for the SCDAG includes stopping the enforcement of the statute, including probation violations related to violations of SOR reporting requirements, creating a protocol for vacating aggravated prostitution convictions, and educating all SCDAG attorneys about HIV and the nondiscrimination requirements of Title II of the ADA.[2] 

Photo Source: CDC

For the state, DOJ’s recommendations include ceasing the enforcement of the statute, using the TBI to remove people on the SOR who are there solely due to aggravated prostitution convictions, expunging all state records showing that those with aggravated prostitution convictions were ever on the SOR, and paying compensatory damages (SOR fees, court costs and fines, bonds, etc.) to those who were victims of the statute.[2,5] One very notable recommendation to the state is to notify all those who have been removed from the SOR and whose references to their convictions have been removed.[2] Not only is it legally empowering to have documentation in hand, but it is also mentally empowering to have confirmation of reclaiming control over one’s life.

The aggravated prostitution law is predatory to vulnerable populations and is not based on science, according to our government's highest law enforcement institution. It is draconian, according to advocates. Since 1991, advances in antiretroviral therapy have come a long way and it has opened the door to "treatment as prevention" (TasP) and "undetectable equals untransmittable" (U=U). Laws need to reflect these advances.

S. Mandisa Moore-O’Neal, CHLP Executive Director, states, “The implications of the DOJ’s findings are far-reaching. This not only puts the state of Tennessee on notice that this is a serious issue, but it also serves as notice to other states with similar HIV criminal statutes.”[4] Regarding the future continuation of the fight against HIV criminalization, she also says, “This is also an opportunity for other state coalitions organizing and educating around HIV criminalization to leverage these findings with lawmakers. When many state budgets are already tight, the possibility of new and often costly litigation may be the impetus to change these laws.”[4]

Jen Laws, President & CEO of the Community Access National Network applauded the decision, "This is an excellent development in implementing the ADA and affording protections to people living with HIV. We owe a debt of gratitude to our friends at CHLP for exploring this legal argument. DOJ's Civil Rights Division has room to expand on this work in other areas affecting people living with HIV and the legal system. From enforcement of medication access for incarcerated and jailed persons to enforcement of these same protections in family courts, our people face discrimination when interacting with our legal system and that needs to change."

In today’s political climate, many lawmakers either do not care about the adverse effects flawed laws have on marginalized communities or feel the consequences of the laws are somehow deserved due to their personal ideologies. Challenging the aggravated prostitution law by showing how it violates the ADA is a perfect example and blueprint of how to fight legalized oppression by using legal statutes that cannot be ignored. When one cannot change the system, it’s empowering to find ways to use the existing system to one’s advantage. Chalk-up a big win for CHLP...and PLWHA in Tennessee.

[1] Health Resources and Services Administration. (2023, September). Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Dat1) Centers for Disease Control. (2023). HIV and STD Criminalization Laws. Retrieved from https://www.cdc.gov/hiv/policies/law/states/exposure.html#:~:text=As%20of%202022%2C%2035%20states,categorized%20them%20into%20four%20categories.

[2] U.S. Department of Justice Civil Rights Division. (2023, December 1). The United States’ Findings and Conclusions Based on its Investigation of the State of Tennessee and the Shelby County District Attorney General’s Office under Title II of the Americans with Disabilities Act, DJ No. 204-70-85. Retrieved from https://www.justice.gov/d9/2023-12/2023.11.30_tn_hiv_lof_final.pdf

[3] U.S. Department of Justice Civil Rights Division. (2023). Protecting the rights of persons living with HIV/AIDS. Retrieved from https://archive.ada.gov/hiv/ada_hiv_brochure.html

[4] Center for HIV Law and Policy. (2023, December 1). News Release: CHLP Made the call and the DOJ answered. Retrieved from https://www.hivlawandpolicy.org/news/news-release-chlp-made-call-and-doj-answered

[5] Kruesi, K. (2023, December 1). Tennessee’s penalties for HIV-positive people are discriminatory, Justice Department says. Retrieved from https://apnews.com/article/justice-department-hiv-tennessee-6cda4a9170dfbe46bd8d8f6af91f76cd

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.

Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report

By: Ranier Simons, ADAP Blog Guest Contributor

Effective population health monitoring, program evaluation, and decision-making requires quality data. To that end, in September 2023, the Division of Policy and Data, HIV/AIDS Bureau (HAB) under the Health Resources and Services Administration (HRSA), U.S. Department of Health and Human Services published the Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report.[1] The current iteration of this annual publication covers the years 2017 through 2021. The client-level data includes information such as demographics, socioeconomic status/factors, and service utilization.

ADAPs are in each of the 50 states, the District of Columbia, Puerto Rico, the U.S. Virgin Islands, and six U.S. territories, receiving funding from Part B of the Ryan White HIV/AIDS Program (RWHAP). Eligibility for ADAP services requires one to have a diagnosis of HIV, be of low income, defined as a percentage of the federal income poverty level, and meet residency requirements based on a particular state’s ADAP structure. The report includes a multitude of metrics grouped by age, race/ethnicity, gender, federal poverty level, and healthcare coverage status. What follows is an overview of some of the data. To view the report in its entirety, please click here.

According to the report, clients served numbers are on an upward trend. From 2017 to 2021, the client base grew from 268,174 to 289,289. These numbers describe those who specifically receive ADAP services and do not include clients who only receive non-ADAP RWHAP direct health care and support services. However, some ADAP clients partake of those services as well. Increasing yearly numbers indicate that ADAP programs are needed, and ongoing funding is necessary. Additionally, research shows that ADAP programs are cost-effective, and policies that stifle them are detrimental to the health and well-being of those dependent upon them and society overall.[2]

Photo Source: NASTAD

A few gender-related observations stand out as well. Most of the ADAP clients are male. In 2021, 78.6% were cis-gender male. This percentage and the overall gender ratio of male, female, and transgender patients served has remained consistent over the 2017-2021 timeframe. In 2021, the data shows a difference in poverty based on gender. There were more cis-gender female/transgender female ADAP clients than cis-gender male/transgender males living at or below 100% of the federal poverty level, though as a whole, half of all ADAP clients were below. The comparison was 54.1% cis-gender female and 65.6% transgender female in contrast to 44.7% cis-gender male and 51.4% transgender male. Gender differences were also noted in the status of healthcare coverage. In 2021, 36.5% of ADAP clients were entirely without health care insurance coverage. However, of that subgroup, 36.6% were male, and 34.95 were female. The numbers for transgender clients were higher, with 49.8% of transgender males and 51.2% of transgender females lacking any healthcare coverage. Complete lack of coverage means they did not even have Medicaid.

The report indicated a few standout metrics regarding race as well. The majority of ADAP clients are non-White. In 2021, seven out of ten were racial or ethnic minorities, with white clients comprising 30% of the client total. A further breakdown of the racial data indicates that in 2021 over half, 55%, of female ADAP clients were African American. By comparison, 24.1% were Hispanic/Latina, 18.1% were White, and less than 2% identified as Asian, mixed-race, American Indian/Alaska Native or Native Hawaiian/Pacific Islander. In contrast, 33.6% of male clients were African American, 33.3% were White, and 29.9% were Hispanic/Latino. A very notable racially varied metric involved age. Ethnic/minority ADAP clients are younger than White clients. In 2021, 62.1% of white clients were 50 years of age or older. This contrasts with the statistics of 39.9% being African American, 48.9% being American Indian/Alaska Native, 38.6% Hispanic/Latino, and 36.0% Asian. 

The observations are just a few of the many data points described in the report. Continued reporting of this nature is necessary for accountability in terms of the billions spent on ADAP each year and to continue to improve the services and the lives of those dependent on ADAP services. Whether examining the breakdown of various service utilization or how the distribution of services differs based on geographical region, continuing to create a robust repository of data is the best way to improve the health outcomes of the vulnerable ADAP population.

[1] Health Resources and Services Administration. (2023, September). Ryan White HIV/AIDS Program AIDS Drug Assistance Program (ADAP) Annual Client-Level Data Report 2021. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/data/hrsa-adap-data-report-2021.pdf

[2] McManus, K. A., Strumpf, A., Killelea, A., Horn, T., Hamp, A., & Keim-Malpass, J. (2022). Economic benefits of the United States' AIDS drug assistance Program: A systematic review of cost analyses to guide research and policy priorities. Preventive medicine reports, 29, 101969. https://doi.org/10.1016/j.pmedr.2022.101969

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.

Provider ‘Smash and Grab’ Tactics Fueling Medical Debt, Hurting Patients

By: Ranier Simons, ADAP Blog Guest Contributor

In the United States, healthcare is one universal expense incurred by everyone, regardless of their station in life. Approximately 100 million people in this country, including 41% of adults, have some sort of medical debt.[1] Some people can manage it, but many struggle. As a result of medical debt, people have had to cut spending on food and necessities, deplete savings, delay purchasing a home, work multiple jobs, or even declare bankruptcy.[1]

Photo Source: iStock (purchased)

Most of the medical debt is actually hospital debt, and that debt is owed to large hospitals, not small private practices. In the United States, there are two different types of hospitals: for-profit and nonprofit. There are 5,139 community hospitals, with 1,228 being for-profit, 951 being state and local government-run hospitals, and 2,960 being non-governmental nonprofit health facilities.[2] For-profit hospitals are business-oriented and owned by investors and shareholders; thus, they are focused on making money for their stakeholders. Nonprofit hospitals are not beholden to any shareholders or investors. In theory, their profits are to be reinvested into the hospitals for their operations. Additionally, nonprofit hospitals are tax-exempt and required to provide more community health services and serve patients regardless of whether they can afford care. Unfortunately, some nonprofit hospitals are the worst offenders when it comes to saddling patients with debt.

Nonprofit hospitals do not pay any federal and state income, property, or sales taxes and receive other tax breaks.[2] In 2020, the nation’s nonprofit hospitals received an estimated $28 billion in tax benefits, accounting for 44% of their net income.[3] In return for the tax benefits, the federal government requires nonprofit hospitals to provide community benefits such as charity care. Charity care is providing services to low-income people for free or at significantly reduced rates.[3] The Affordable Care Act (ACA) also mandates that they must maintain a transparent and available financial assistance program and refrain from taking “extraordinary collection actions” against patients eligible for charity care.[4] The reality of some of the largest nonprofit hospitals is a travesty of the concept of charity care.

Photo Source: National Nurses United

Some nonprofit hospitals aggressively pursue patients over their bills. They garnish paychecks and sell patient accounts to collection agencies (debt buyers) that harass and intimidate. Lawsuits are filed against patients for outstanding balances. Some of them are filed against people who qualify for charity care. These lawsuits attach legal fees and late payment interest, multiplying the original outstanding debt amounts. Moreover, some hospitals pursue family members for a patient’s medical debts and even place property liens on patients’ homes. Many do not find out about property liens until a relative has passed. Property liens lower the value of homes and adversely affect the transference of intergenerational wealth.

Federal tax law mandates that nonprofit hospitals spend some of their revenues as community benefit and defines the kind of spending that qualifies but does not stipulate the amount. Charity care is just one of the defined categories of spend. In 2020, nonprofit hospitals had approximately $28 billion in tax exemptions but provided only $16 billion in free or discounted services through charity care.[5] 

U.S. Senator Bernie Sanders, chair of the Senate Committee on Health, Education, Labor & Pensions (HELP), filed a congressional report on nonprofit hospitals and their tax exemptions. The committee examined 16 of the largest nonprofit health systems in the U.S., finding that they spent less than 60% of the estimated value of their tax breaks on charity care.[6] The 16 hospital chains examined took in more than 3$ billion in annual revenue. Twelve of the 16 chains dedicated less than two percent of their total revenue to charity care, with 6 of those 12 having less than 1% of their total revenue dedicated to charity care.[3] Between 2012 and 2019, nonprofit hospitals increased their average operating profit by more than 36% and almost doubled their cash reserves. In the same timeframe, charity care spending dropped from only $6.7 million to $6.4 million.[3] Ironically, in 2021, of the 16 nonprofit hospital chains in the report, the average CEO compensation was $8 million, with a collective total of more than $140 million.[3]

Photo Source: WRAL

Editor's Note: ADAP Advocacy recently called into question 340B Drug Discount Program practices with an examination focused on growing 340B revenues, increasing executive compensation, declining charity care, and the exploding medical debt.

Sen. Sanders feels that Congress should specifically define the level of charity care and financial assistance required of nonprofit hospitals. One suggestion is that tax breaks be limited to the amount of charity care provided. Additionally, Sanders feels that hospital financial assistance programs should have defined standards. For example, some of the hospitals do not transparently explain, advertise, or actively facilitate entering qualified patients into the programs. Instead, some hospital systems, such as Atrium in North Carolina, steer patients towards loans to pay their outstanding bills that sometimes have interest rates as high as 13%.[7]

Hospital groups pushed back against the analyses by Sen. Sanders, but they also tend to oppose any accountability or transparency reforms.. The American Hospital Association states that nonprofit hospitals' community benefit is comprehensive and encompasses more than just charity care. It says that community benefit includes research, medical innovation, absorbing underpayments from Medicaid, health education, and housing assistance.[6,8] That sentiment is misleading and flawed. For example, a good deal of research is funded by taxpayers’ dollars.

Jen Laws, President & CEO of the Community Access National Network (CANN), isn't buying the AHA's argument. According to Laws, financial assistance and community benefit are different line items on the Internal Revenue Service's Form 990 for a reason. In fact, CANN has been quite vocal on the need for reforms to programs designed to help indigent patients, yet are falling short of that intended goal.

According to Laws, community assumption is a "good faith" definition, but loopholes surrounding hospital-related nonprofit status tax rules inevitably can lead to bad faith in this space, or even abuse. He believes the overwhelming body of evidence surrounding the decline in hospital charity care is in direct opposition of the IRS' intention, namely providing a benefit to needy persons, families, and communities.

Laws said, "For example, our government, namely the IRS, hasn't updated 'community benefit' rules in decades and many no longer apply, like having an open Emergency Room. This gets to the core of CANN's position - honesty is not part of that muddy language. And we need to be frank about that lack of honesty."

It is crucial that community benefit standards are revamped with a focus on charity care that directly benefits those in need. In some states, the difference between the amount of funds spent on charity care and the total tax exemptions the nonprofit hospitals receive is greater than the recorded debts listed on patients' credit reports.[3] Change must come so that needy patients' lives are no longer ruined by being sued by hospitals for outstanding balances as low as $500 or less that they can’t afford to pay.

[1] Levey,N. (2022, June 16). 100 Million people in America are saddled with health care debt. Retrieved from https://kffhealthnews.org/news/article/diagnosis-debt-investigation-100-million-americans-hidden-medical-debt/

[2] Modi, J. (2023, March 21). Nonprofit vs. for-profit hospitals: what’s the difference? Retrieved from https://www.buzzrx.com/blog/nonprofit-vs-for-profit-hospitals-whats-the-difference

[3] United States Senate Health, Education, Labor, and Pensions Committee. (2023, October 10). Mahority Staff Report: Major Nonprofit Hospitals Take Advantage of Tax Breaks and Prioritize CEO Pay Over Helping Patients Afford Medical Care. Retrieved from https://www.sanders.senate.gov/wp-content/uploads/Executive-Charity-HELP-Committee-Majority-Staff-Report-Final.pdf

[4] 26 U.S.C 501(r)(4), (6); Internal Revenue Serv, Billing and Collections – Section 501(r)(6) (Jul. 13, 2023), https://www.irs.gov/charities-non-profits/billing-and-collections-section-501r6. 

[5] Miller, A., Hawryluk,M. (2023, July 11). As Nonprofit hospitals reap big tax breaks, states scrutinize their required charity spending. Retrieved from https://kffhealthnews.org/news/article/nonprofit-hospitals-tax-breaks-community-benefit/

[6] Wilkerson,J. (2023, October 10). Bernie Sanders bashes nonprofit hospitals over their tax breaks. Retrieved from https://www.statnews.com/2023/10/10/bernie-sanders-nonprofit-hospitals/

[7] Levey,N. (2023, August 16). North Carolina hospitals have sued thousands of their patients, a new report finds. Retrieved from https://kffhealthnews.org/news/article/north-carolina-hospitals-patient-debt-lawsuits/

[8] American Hospital Association. (2023, October). Tax-exempt hospitals provided nearly $130 billion in total benefits to their communities. Retrieved from https://www.aha.org/system/files/media/file/2023/10/Results-from-2020-Tax-Exempt-Hospitals-Schedule-H-Community-Benefit-Reports.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.   

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.