Fed-Up with Medical Debt Owed to Hospitals, States and Municipalities Respond

By: Ranier Simons, ADAP Blog Guest Contributor

Medical debt is a significant financial burden in the United States. It affects both insured and uninsured adults. Medical debt encompasses the high bills consumers are saddled with, in addition to the credit card and other personal loan debt incurred while trying to pay the medical bills.[1] Approximately 100 million Americans hold $195 billion in medical debt, with most owing less than $1,000.[2] A previous ADAP Advocacy blog discussed how patients are even being failed by what is supposed to be charity care by nonprofit hospitals. Nonprofit and for-profit hospitals send patients into financial ruin using predatory collection agencies and other tactics.[3] Medical debt is unavoidable debt, often from singular emergent occurrences, dissimilar to other consumer debt incurred by choice. Realizing the need to help communities, cities have taken innovative measures to relieve their citizens' medical debt woes.

Photo Source: Urban Institute

According to the Urban Institute, over 74% of medical debt is owed to hospitals.[10] Hospital debt has become big business. Noam Levey, senior correspondent for KFF Health News, explains, “Our healthcare system is now generating medical debt on an industrial scale…And a good part of that is coming from not-for-profit health care.”[11] About two-thirds of hospitals will take legal action against outstanding debt, including collections, with some even denying non-emergent care for unpaid debt. Patients’ best interests are not at the forefront when a hospital denies access to needed care due to bills in arrears. Some hospitals have even placed liens on patients’ homes. Liens are an additional financial burden and affect generational wealth since one cannot sell or pass down a property saddled with liens.[3]

One route being utilized by cities is to take advantage of the existing system. Patients' unpaid medical debts are sold to collection agencies as bad debt for small fractions of the actual amounts. Customarily, collection agencies buy this second market debt cheaply and then try to collect as much as possible as profit. Several cities, including Washington, D.C., New Orleans, Louisiana, and Toledo, Ohio, have used funds to buy patients medical debt and forgive it.[2] A large portion of the funding municipalities have used to erase the debt is pandemic relief money. Some municipalities, such as Cook County, Illinois, have partnered with a nonprofit named RIP Medical Debt to purchase medical debt.[2,4]

Photo Source: KFF

Since 2014, RIP Medical Debt has abolished over $11.8 billion in medical debt for over seven million people.[5] With donations, they have purchased large bundles of medical debt at pennies on the dollar and then canceled the debts instead of trying to make a profit. They are contracting with cities and counties to do the same. RIP Medical Debt helps municipalities analyze their hospital systems' medical debts. They identify those with medical debts that are five percent or more of their income and or patients who are at or below 400% of the poverty level.[6] People cannot apply for assistance, nor do they have to. Once it is verified that criteria are met, qualified purchased medical debts are canceled, and beneficiaries are sent letters notifying them of their debt forgiveness. Over 16 cities, 12 counties, and seven states have expressed interest in collaborating with RIP Medical Debt.

Utilizing medical debt erasure is a significant relief to many. However, funding is limited, and it does not address the deeper issues. Many Americans are uninsured or underinsured. Many people with insurance have high-deductible plans, which place them in the guillotine of runaway medical expenditures. Additionally, many people can’t afford their high co-payments or coinsurance payments when they are stuck with receiving out-of-network care. Allison Sesso, President & CEO of RIP Medical Debt, expressed, “Across all health care services, the pricing is just way too high for people to afford, and we need transparency on pricing to make informed health care decisions.”[7]

Legislation is another avenue states are using to help with medical debt. While it’s not debt forgiveness, Maryland has laws that raised the income threshold for hospital care and prohibited wage garnishment or home liens in certain medical debt judgments.[2] There is a current bill being considered in Maryland, HB328, that “expands the number of patients receiving free and low-cost hospital care by ending arbitrary asset and geographic tests used by 27 hospitals to bar patients who were eligible for low-cost care’.[8]

Photo Source: CNN

States are also working towards preventing medical debt from ruining individuals’ credit. California Attorney General Rob Bonta is a sponsor of Senator Monique Limón’s bill, SB-1061, which would block healthcare entities and associated collections agencies from sharing bad medical debt with credit bureaus. If it becomes law, California would be the third state to remove medical bills from credit reports, following Colorado and New York, which enacted laws in 2023.[9] Hospitals and collection agencies have used credit reporting to force people to pay bad debts. However, credit reporting can result in the denial of housing and job applications and disrupt families’ financial lives with repercussions that lower quality of life and social mobility.[3]

Medical debt is not going away in the foreseeable future, nor are the high costs of medical care. The challenges of medical debt disproportionately hinder the lives of the poor, ethnic minorities, and other marginalized groups. Creating solutions to shield consumers from the ravages of medical debt is essential. However, dismantling the root causes of unregulated and disparate medical services pricing is paramount. Band-Aids of temporary relief do not override the foremost requirement of systemic change.

[1] Lopes, L., Kearnet, A., Montero, A., Hamel, L., Brodie, M. (2022, June 16). Health care debt in the U.S.: The broad consequences of medical and dental bills. Retrieved from https://www.kff.org/report-section/kff-health-care-debt-survey-main-findings/

[2] Biron, C. (2023, July 21). Americans owe billions in medical debt. Can cities help? Retrieved from https://www.reuters.com/article/idUSL8N38W2UP/

[3] Simons, R. (2023, November 30). Provider ‘smash and grab’ tactics fueling medical debt, hurting patients. Retrieved from https://adapadvocacyassociation.blogspot.com/2023/11/provider-smash-and-grab-tactics-fueling.html

[4] MacDougall, H., Tuttle, M., Henning-Smith, C. (2024, March 18). To address the crisis of medical debt, lawmakers should focus on Greater Minnesota. Retrieved from https://www.minnpost.com/community-voices/2024/03/to-address-the-crisis-of-medical-debt-lawmakers-should-focus-on-greater-minnesota/

[5] RIP Medical Debt. (2024). https://ripmedicaldebt.org/

[6] Walsh, J. (2023, April 25). Cleveland City Council approves medical debt relief; here's what that means. Retrieved from https://www.news5cleveland.com/news/local-news/investigations/cleveland-city-council-approves-medical-debt-relief-heres-what-that-means

[7] Vollers, A. (2024, February 22). Governments can erase your medical debt for pennies on the dollar — and some are. Retrieved from https://www.thelundreport.org/content/governments-can-erase-your-medical-debt-pennies-dollar-and-some-are

[8] End Medical Debt Maryland. (2024, February 14). Testimony to the House Health & Government Operations Committee. Retrieved from https://mgaleg.maryland.gov/cmte_testimony/2024/hgo/1bQYmcYDHBKw2yjI4-IgapCig5mvNIusH.pdf

[9] Work, M. (2024, March 11). California attorney general boosts bill banning medical debt from credit reports. Retrieved from https://kffhealthnews.org/news/article/california-attorney-general-medical-debt-ban-on-credit-reports/

[10] Urban Institute. (2023, October 10). Debt in America: An interactive map. Retrieved from https://apps.urban.org/features/debt-interactive-map/?type=medical&variable=medcoll

[11] Thompson, I. (2023, September 5). Nonprofit hospitals pursue aggressive medical debt collection. Retrieved from https://nonprofitquarterly.org/nonprofit-hospitals-pursue-aggressive-medical-debt-collection/

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. 

Alternative Funding Programs are Simply the Rich Robbing the Poor

By: Ranier Simons, ADAP Blog Guest Contributor

Patients who utilize specialty medications are living with serious and often chronic health conditions, such as cancer, cystic fibrosis, diabetes, or HIV. Barriers to obtaining those medications can literally be a matter of life and death. Many people obtain their specialty drugs via their private health insurance, often employer-sponsored plan. Unfortunately, some insurance plans engage in very anti-patient policies, such as copay accumulators and copay maximizers, placing profit above the patient’s well-being. The most recent anti-patient cost-shifting scheme is the alternative funding program (AFP). AFPs are characterized as “sinister” by some patient advocates because they force patients with private insurance to utilize public safety net programs taxing already limited resources earmarked for those who are truly in need. Additionally, AFPs create barriers to access and adversely affect healthcare outcomes.[1]

Photo Source: Health Policy Today

Alternative funding programs' primary mode of operation is to convince self-insured health plans to exclude most if not all, specialty prescription drugs from coverage in their formulary.[2] In 2020, the average cost of a specialty drug for a chronic health condition was $84,442.[1] Specialty prescriptions cost about ten times more than regular medications. Their exclusion from a plan’s drug formulary essentially renders beneficiaries ‘uninsured’ regarding their medication. When patients are prescribed a non-covered specialty medication, their plan denies the claim, and the AFP then seeks to enroll the patients in patient assistance programs.[2] If the patient qualifies for a patient assistance program from a manufacturer or charity, they receive the medication for free or at a significantly reduced cost. If they do not qualify for any programs, the claim returns to the plan and is covered under the standard pharmacy benefit with cost-sharing.

This cost-cutting scheme is multidimensionally problematic. It is dangerous regarding the continuity of patient care. Applying for these programs takes time. These third-party AFPs must gather financial and demographic information for the process, and approval could take two to four weeks or sometimes months.[2,3] Being without prescriptions for that long can cause serious medical problems and create or exacerbate symptoms. It is possible that resulting adverse outcomes could even be irrevocable. 

This is especially dire for those taking HIV antiretroviral medication, where adherence is vital in maintaining viral suppression. Tim Horn, Director of Medication Access at NASTAD, reports, “What we're seeing in a number of states are AFP administrators referring people requiring antiretrovirals or other high-cost drugs to manufacturer patient assistance programs, which may in turn end up recommending enrollment in the state AIDS Drug Assistance Program.” He adds, “the denial of the original pharmacy claim by the employer's plan, the capacity it takes to apply for and be turned down by a manufacturer PAP, followed by the time and energy it takes to apply and be confirmed eligible for ADAP support effectively means someone can go for weeks without being able to access essential medicines – and that's if they haven't given up on the whole process entirely.”

Photo Source: ONS Voices

Critics argue that AFPs are unethical and fiscally damaging. As Adam J. Fein, Ph.D., CEO of Drug Channels Institute, points out, “You’re basically trying to access money that is explicitly intended for needy, uninsured, financially strapped patients. This is not copay support for commercial benefits, where the benefit kind of stinks or they over-cost-shifted.”[4] Manufacturer and charity patient assistance programs have limited funds. AFPs’ abuse of the system could eventually drain programs to the point of causing programs to close entirely or at least drastically reduce the ability to extend help to the genuinely uninsured and indigent. It is unjust and inequitable for AFPs to use patient assistance funds to subsidize health insurance plans for profit.

Some AFPs utilize a practice that directly endangers the lives of plan members. If a beneficiary does not qualify for the patient assistance programs, AFPs may attempt to source a needed medication through international mail order. This exposes patients to unregulated medicines that could be counterfeit, impure, expired, and otherwise dangerous to their health. Additionally, guidance from the U.S. Food & Drug Administration (FDA) indicates that it is illegal for individuals to import drugs or devices into the United States for personal use under most circumstances.[5]A couple of extremely narrowly defined exceptions exist: the Personal Importation Policy and the Importation of Drugs Originally Intended for Foreign Markets Policy. However, utilizing international mail order for the members of an entire health plan does not fall under either of those exceptions.

In an effort to push back against AFPs, advocacy groups have been flagging AFPs as violations of various regulations under the Employee Retirement Income Security Act of 1974 (ERISA). (ERISA) is a federal law that sets minimum standards for most voluntarily established retirement and health plans in private industry to protect individuals in these plans.[6] This includes employer self-insured plans. ERISA exists to ensure that health plans operate in the best interests of the beneficiaries. ERISA is comprised of many rules. Developing inquiry efforts include exploring how AFPs could be causing health plans to improperly exercise their fiduciary duties and how they may create discriminatory plan design.[7]

According to Carl Schmid, Executive Director of the HIV+Hepatitis Policy Institute, “Most AFPs are taking advantage of a loophole in the ACA that allows employer plans to designate certain drugs as “non-essential health benefit”.  The federal government through regulation seems to be starting to close that loophole for marketplace and small group plans, but for the larger employer plans, that really are the guilty parties, we need to continue to push the administration to act.  Bills are also pending in several states and in the Congress. This is just a start, but to end AFPs, the government must step in stop these nefarious schemes.”

Photo Source: iStock

Alternative funding programs amount to simply the rich robbing the poor, but they are growing in number. Currently, there are over twenty AFP vendors. They are not in the best interests of employers because the cost savings are deceptive. While plan sponsors may celebrate the relief of not paying for expensive specialty medication, they incur high costs from the AFP plan administrators. AFPs charge payers’ large percentages of the savings they achieve, sometimes as high as 25% of a drug’s list price.[8] Plan beneficiaries are harmed by delays in care, the stress of administrative red tape, and increased cost burdens when eligibility for AFP funding mechanisms goes awry. The public is harmed because AFPs divert funds from those who truly are in need. Ongoing developments indicate that it will be crucial for advocacy groups and the government to be vigilant in preventing the proliferation of AFPs and the damage they cause.

[1] Alliance for Patient Access. (2023, June). The high costs of alternative funding programs. Retrieved from https://allianceforpatientaccess.org/wp-content/uploads/2023/06/AfPA_High-Costs-of-Alternative-Funding-Programs_June-2023.pdf

[2] Blum, K. (2023, November 20). ‘Alternative’ model for patient assistance draws stakeholder ire. Retrieved from https://www.specialtypharmacycontinuum.com/Policy/Article/12-23/Alternative-Model-For-Patient-Assistance-Draws-Stakeholder-Ire/72048

[3] Schroeder, D. (2022, November 22). The looming threat of alternative funding models. Retrieved from https://ipghealth.com/news/the-looming-threat-of-alternative-funding-models

[4] AIS Health. (2022, September 1). Industry experts question alternative funding companies that carve out some specialty drugs, ‘abuse’ charities. Retrieved from https://www.mmitnetwork.com/aishealth/spotlight-on-market-access/industry-experts-question-alternative-funding-companies-that-carve-out-some-specialty-drugs-abuse-charities/

[5]  FDA. (2023, December 7). Personal Importation. Retrieved from https://www.fda.gov/industry/import-basics/personal-importation#:~:text=In%20most%20circumstances%2C%20it%20is,unapproved%20new%20drug%20in%20the

[6] U.S. Department of Labor. (2024). ERISA. Retrieved from https://www.dol.gov/general/topic/health-plans/erisa#:~:text=The%20Employee%20Retirement%20Income%20Security,for%20individuals%20in%20these%20plans.

[7] Aimed Alliance. (2022, December 14). Essential health benefits, importation, and more – Do you know the risks?[Video]. YouTube. https://www.youtube.com/watch?v=U9-rJZ9YjLU&t=723s

[8] Fein, A. (2022, August 2). The shady business of specialty carve-outs, a.k.a., Alternative Funding Programs. Retrieved from https://www.drugchannels.net/2022/08/the-shady-business-of-specialty-carve.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. 

CROI 2024 Highlights: Conference on Retroviruses and Opportunistic Infections

By: Ranier Simons, ADAP Blog Guest Contributor

The fight against HIV and other viruses like HCV and SARS-CoV-2 is a worldwide team effort. That is why the Conference on Retroviruses and Opportunistic Infections (CROI) convened from March 3rd through March 6th, 2024 in Denver, Colorado. Since 1993, CROI has brought together scientists, clinical scientists, and epidemiologists to present original groundbreaking research and collaborate to advance the treatment and prevention of HIV and other viral infections and opportunistic diseases.[8] CROI is one the first places research showing the effectiveness of triple-drug therapy for HIV was shared. It was also one of the first places where the results of the SMART study were shared, which proved that early treatment of HIV provides the best outcomes.[8] This year, 4,000 attendees gathered at CROI. Participants presented a multitude of novel and emerging therapies and studies. What follows are just a few notable highlights.

Photo Source: CROI

Long-Acting Injectables Blaze Forward

GSK’s long-acting injectable, cabotegravir, has already shifted the antiretroviral therapy (ART) paradigm. Coupled with rilpivirine, it is one-half of Cabenuva, the first complete ART injectable approved by the U.S. Food & Drug Administration (FDA). Cabenuva allows people who live with HIV (PLWH) to change from taking daily pills to the Cabenuva injection monthly or every two months. Studies have proven it is effective for those who have medication adherence challenges. It also presents an option for PLWH who wish to make medication management a less intrusive part of their lives.

ViiV Healthcare, the HIV-focused subsidiary of GSK, presented data from a clinical trial for a revolutionary new ultra-long-acting cabotegravir at CROI.[7] The new formulation has a higher concentration and double the half-life, potentially allowing it to be dosed every four months instead of every two.[7] Further clinical trials will be conducted to explore the use of the new formulation of cabotegravir as PrEP and as a treatment for PLWH. GSK’s goal is to have the first long-acting injectable for HIV prevention on the market by 2026 and for HIV treatment by 2027. The company also aims for an annual long-acting injectable by the first part of the 2030s.

DoxyPEP for STIs

DoxyPEP stands for doxycycline post-exposure prophylaxis. It is the practice of taking 200mg of oral doxycycline within 24 to 72 hours of condomless sex. Clinical trials have shown that DoxyPEP is effective in reducing the incidence of bacterial STIs such as syphilis and chlamydia. Results of Doxy PEP clinical studies of reducing STIs have been so promising that the CDC proposed guidelines for DoxyPEP usage in October 2022. However, those guidelines are not finalized.[1] 

Infectious disease professionals at CROI presented new data regarding DoxyPEP usage out in the real world among populations of people, mainly cisgender MSM and transgender women. Previous data was from clinical trials in contrast with new data that examined the results of DoxyPEP uptake in over 3,700 clients of sexual health clinics across San Francisco. Usage resulted in a 58% reduction in bacterial STI cases overall, a 67% reduction in chlamydia, and a 78% reduction in syphilis cases.[2] The real-world data indicated that when offered, there was a demand for DoxyPEP, and people consistently integrated it into their sexual health routine. As the Centers for Disease Control & Prevention (CDC) finalizes formal guidelines, DoxyPEP may potentially be solidified as another viable form of population wide STI prophylaxis.

Weekly Oral Antiretroviral Therapy

Long-acting injectable HIV therapy is not an optimal treatment modality for everyone. Nevertheless, other options for medication adherence that do not involve a daily regimen are needed for optimal health outcomes. At CROI, Gilead Sciences and Merck presented data from a clinical trial for a possible weekly oral antiretroviral therapy (ART) solution.

The solution is a weekly dosage of Gilead’s Sunlenca (lenacapavir), and an experimental drug named islatravir from Merck. [3,4] The phase 2 trial compared 104 patients taking daily Biktarvy (bictegravir 50mg/emtricitabine 200mg/tenofovir alafenamide 25mg tablets) with a group taking the weekly oral lenacapavir with islatravir. Data indicated that 94.2% of subjects taking the lenacapavir/islatravir combination maintained their viral suppression compared to 92.3% of the Biktarvy group.[3,4] The study will continue for another 48 weeks as open-label. This means that the study is no longer randomized. Both the medical professionals and the subjects know precisely what they are being given. There is no placebo. Studies move forward to open-label from randomized controlled studies once a high level of efficacy is proven and high benchmarks of defined endpoints are reached. 

Protecting Pregnant Women from HIV Infection

Research has shown there are physiological changes in the female body that cause a threefold increase in the risk of contracting HIV while pregnant.[5] This is especially troubling for countries where HIV is at an endemic level. Medications for HIV treatment and prevention are powerful, and it is crucial to find safe pharmaceuticals that will not harm the mother or the developing fetus.

At CROI, data from a multi-country (South Africa, Uganda, and Zimbabwe) clinical study presented safe options. A monthly flexible vaginal ring containing dapivirine as well as oral daily tenofovir disoproxil fumarate/emtricitabine PrEP (Truvada) were shown to be safe for use for pregnant women. The dapivirine vaginal ring is established in some African countries to be used as HIV prevention for cisgender women who are not pregnant. Truvada has already been proven to be safe for pregnant HIV-positive mothers to use.

The study was a randomized trial where pregnant women aged 18-40 used the dapivirine ring or received the oral PrEP up until delivery or for 41 weeks and six days, depending on which came first.[6] Only 1% experienced stillbirth or miscarriage, 95% of the women’s pregnancies went to term, and 4% of the births were premature.[6] Most importantly, none of the women contracted HIV. The results indicate that both the ring and Truvada are safe for pregnant mothers and their unborn fetuses to protect them from infection.

CROI continues to be a catalyst for pushing HIV and other infectious disease research forward. Scientific communities meet there, spurring the most qualified and passionate minds to collaborate and innovate. Whenever a cure for HIV is found, it would not be surprising if someone at a future session of CROI first presents it.

[1] DiMarco DE, Urban MA, Fine SM, et al. Doxycycline Post-Exposure Prophylaxis to Prevent Bacterial Sexually Transmitted Infections [Internet]. Baltimore (MD): Johns Hopkins University; 2023 Sep. Available from: https://www.ncbi.nlm.nih.gov/books/NBK597440/

[2] Carstens, A. (2024, March 6). DoxyPEP aces first real-world test. Retrieved from https://www.thebodypro.com/article/croi-2024-doxypep-real-world-clinical-data

[3] Clinical Trials Arena. (2024, March 7). Gilead-Merck’s combination therapy maintains HIV suppression in trial. Retrieved from https://www.clinicaltrialsarena.com/news/gilead-merck-hiv-trial/?cf-view

[4] Taylor, P. (2024, March 7). Gilead and MSD say weekly oral therapy controls HIV. Retrieved from https://pharmaphorum.com/news/gilead-and-msd-say-weekly-oral-therapy-controls-hiv

[5] Salzman, S. (2018, March 9).New study shows women's HIV risk triples during pregnancy, quadruples postpartum. Retrieved from https://www.thebodypro.com/article/new-study-shows-womens-hiv-risk-triples-during-pre

[6] HIV.gov. (2024, March 5). Vaginal ring and oral Pre-Exposure Prophylaxis found safe for HIV prevention throughout pregnancy. Retrieved from https://www.hiv.gov/blog/vaginal-ring-and-oral-pre-exposure-prophylaxis-found-safe-for-hiv-prevention-throughout-pregnancy

[7] Reuters. (2024, March 5). GSK's new HIV drug formula could support longer dosing intervals. Retrieved from https://www.reuters.com/business/healthcare-pharmaceuticals/gsks-new-hiv-drug-formula-could-support-longer-dosing-intervals-2024-03-04/

[8] CROI Foundation. (2024). General information about CROI. Retrieved from https://www.croiconference.org/about/

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. 

Through Her Tears, Compassion, and Hope, Hydeia Loren Broadbent Changed the Narrative on HIV/AIDS

By: Ranier Simons, ADAP Blog Guest Contributor

Hydeia Loren Broadbent came into this world on June 14, 1984, and the sun set on her life on February 20, 2024.[1] Having been born with HIV, she literally spent her entire life as an advocate for HIV/AIDS prevention and awareness. Hydeia was diagnosed with HIV at a time when HIV was a death sentence, before the advent of the antiviral medications available today, and when HIV/AIDS stigma and fear ran high due to the unknown. As a child, the doctors predicted she would only have a life span of a few years, yet Hydeia defied their odds and lived 39 full, powerful years dedicating her life to making change.

Photo Source: hydeiabroadbent.com

Normalcy and compassion were what Hydeia desired and were the messages she promulgated. When she was seven years old, during a Nickelodeon news special, she told Earvin “Magic” Johnson, “I want people to know that we’re just normal people.”[4] HIV/AIDS carried a dark stigma during Hydeia’s earliest years as it was viewed as an intravenous drug user and gay men’s disease. Before Hydeia’s journey, Ryan White had to legally fight for the right to attend public schools in Indiana, far away from Hydeia’s home of Las Vegas, Nevada, before he died in 1990. Even though she was able to start public school, she endured travesties and abuses no child should have had to process. One time in kindergarten, a teacher aware of her HIV status sprayed Clorox bleach on her when she sneezed.[2] After that incident, Hydeia was homeschooled with tutors until she started junior high school.[2]

Hydeia was born with HIV in 1984 but was not diagnosed until the age of three. She was adopted at six weeks of age before HIV testing was normalized. Hydeia’s birth mother was denied custody due to drug addiction, hence Hydeia ended up in the adoptive system.[2] Hydeia’s adoptive parents had her tested when they were notified by health officials her birth mother had given birth to another child that she and the child were HIV positive. By age five, Hydeia’s condition had progressed to AIDS. She was one of the first pediatric patients treated with AZT. Rubgie Lucas, an infectious disease investigator in Clark County, where Vegas is located, remembered Hydeia stating, "We had to learn how to treat her because the adult medication was too strong."[3] Anthony S. Fauci remembers treating Hydeia at the National Institutes of Health (NIH). Regarding her life, he stated, “her accomplishments are substantial.”[2]

Hydeia touched many lives both domestically and internationally. She traveled around the world spreading awareness about HIV/AIDS, advocating for treatment and care, and promoting prevention through abstinence and safer sex practices. She is well known for her activism and high-profile public speaking moments, such as when she was on the Oprah Winfrey Show at age 11. Her passion and mission also gave her a platform on shows such as Good Morning America and 20/20.[5] Hydeia was featured in many publications such as The New York Times, People, National Geographic, Ebony, POZ, and was even on the cover of TV Guide.[5] Her knowledge, poise, and personable nature opened doors for many speaking engagements. She spoke to audiences singularly and as a part of panels at institutions such as Morehouse School of Medicine, Duke University, and UCLA. In 2006, Hydeia was a speaker at the International AIDS Conference.

Photo Source: hydeiabroadbent.com

Hydeia gave of herself selflessly while simultaneously dealing with her own humanity. As she spoke to the world as a child, she still dealt with serious health issues such as blood infections, brain fungus, and heart issues. While navigating the demands of being a very public figure, she had to deal with her personal life. She expressed how hard it was to date given her diagnosis yet was optimistic about finding love and being married one day. During her teen years, at the height of her speaking and advocacy, she dealt with depression and perfection anxiety to the point of resenting being such a public figure and speaking to the world. She stated during an episode of Where Are They Now on Oprah’s OWN network that she had to find her inner peace.

In 39 years, Hydeia experienced more life than most people could handle or even comprehend, no matter how long they lived. She experienced HIV/AIDS from the very beginning before there were many treatments through the advent of antiviral drug cocktails. Her life and message touched millions internationally. Hydeia represented children born with HIV, was the face of African American women living with HIV and was a pioneer who forged her way just like Ryan White. She was once quoted as saying, “…with all that we know about the virus, it is clear to me that contracting HIV/AIDS today is a choice, and we can’t allow anyone the power to make that choice for us!”. Hydeia’s legacy is a life fulfilled and a continuing burning torch of compassion and hope to continue to be passed along until we one day conquer HIV/AIDS.

[1] Schilken, C. (2024, February 2022). Hydeia Broadbent, who teamed up with Magic Johnson in HIV/AIDS fight, dies at 39. Retrieved from https://www.msn.com/en-us/health/other/hydeia-broadbent-who-teamed-up-with-magic-johnson-in-hivaids-fight-dies-at-39/ar-BB1iJLdt?ocid=socialshare

[2] Langer, E. (2024, February 23). Hydeia Broadbent, young activist for HIV/AIDS awareness, dies at 39. Retrieved from http://www.washingtonpost.com/obituaries/2024/02/23/hydeia-broadbent-hiv-aids-dead/

[3] Nomura, A. (2024, February 27). Retired county disease investigator reflects on late HIV/AIDS activist from Las Vegas. Retrieved from https://www.msn.com/en-us/health/other/retired-county-disease-investigator-reflects-on-late-hivaids-activist-from-las-vegas/ar-BB1j04HL?ocid=socialshare

[4] Kornelis, C. (2024, February 23). Hydeia Broadbent, Who Helped Change the Conversation About HIV/AIDS, Dies at 39. Retrieved from https://www.msn.com/en-us/health/other/hydeia-broadbent-who-helped-change-the-conversation-about-hivaids-dies-at-39/ar-BB1iMwJU?ocid=socialshare

[5] BounceTV. (2020). Community Activist Award 2020 Trumpet Award Bio. Retrieved from https://www.trumpetawards.com/award-honoree/hydeia-broadbent/1184/#:~:text=Broadbent%20is%20also%20considered%20a,Award%20and%20an%20Essence%20Award.

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. 

Evidence Suggests Long-Acting Injectables Game Changer for Adherence

By: Ranier Simons, ADAP Blog Guest Contributor

Adherence to medication is one of the most important tenets of antiretroviral therapy (ART) for people living with HIV (PLWH). Adherence is taking the appropriate medications in the proper dosages on the correct schedule. Reaching an undetectable viral load requires strict adherence, with which many PLWH have difficulty for various reasons. The recent innovation of long-acting injectables (LAI) is an attempt to strengthen adherence for PLWH who have difficulty with pill regimens. In January 2021, the U.S. Food & Drug Administration (FDA) approved Cabenuva, the first injectable drug combination for HIV.[2,5] GSK recently released results from clinical trial data indicating Cabenuva works better than daily pills for patients with adherence challenges.[1,4,5,6]

Photo Source: Pharmalive

Cabenuva is a two-injection regimen of cabotegravir and rilpivirine administered either once a month or once every two months.[7] This month, GSK released data from the LATITUDE (Long-Acting Therapy to Improve Treatment Success in Daily Life) study comparing the efficacy of Cabenuva in contrast with daily pill regimens regarding adherence.[1] The screened participants were verified as having challenges with ART adherence. They were initially given a three-drug oral ART regimen, receiving comprehensive and incentivized adherence support.[1] Once they were virally suppressed, they were randomly selected to receive Cabenuva injections every four weeks or continue with daily pill therapy.[1] The strong evidence of superior efficacy of Cabenuva over daily pill therapy led the Data Safety Monitoring Board (DSMB) for Advancing Clinical Therapeutics Globally for HIV/AIDS and Other Infections (ACTG) to recommend removal of the randomization and offer all participants the option to take Cabenuva.[1]

This new development is an optimistic win in the fight against HIV. Joey Wynn, activist and chair of the ADAP Long-Acting Injectables Patient Advisory Committee, states, “Although definitely not for everyone, this is the next phase of evolution in HIV therapy. Injections allow us to get on with our lives and not be weighed down with the daily burden of taking pills.” 

There are many reasons daily pill therapy adherence is a challenge for some. Psychologically, taking daily pills is a reminder of disease that is too much for some to handle. There are people with developmental challenges who can't keep up a daily regimen. Stigma and privacy are adherence challenges for PLWH in living situations that are not safe or supportive, where the discovery of medication bottles is not ideal or dangerous.[2,3]

Photo Source: NIAID

As Riley Johnson, project manager for ADAP Advocacy's Long-Acting Injectables Project, points out, “LAIs can mean consistent medication instead of having meds lost or stolen and having to navigate bureaucratic hoops to pursue replacement.”

While very promising, Cabenuva does have hurdles to its implementation. Presently, there are three main criteria to be eligible for Cabenuva. It is only approved for PLWH who are virally suppressed, have documented absence of resistance to either cabotegravir or rilpivirine, and have no prior antiretroviral treatment failures.[2] Viral suppression requires adherence to oral medication, which is the challenge LAIs were created to remedy. In 2019, the Centers for Disease Control & Prevention (CDC) estimated that only 56.8% of PLWH were virally suppressed or undetectable.[2] This means that less than half of PLWH in the U.S. would qualify for Cabenuva. 

Just as with pill regimens, cost is also a hurdle for widespread adoption. The wholesale acquisition cost of the initial/loading dose is $5,940, and monthly/maintenance injections are $3,960.[5] Insurance companies must approve Cabenuva before patients can begin therapy. This is an access issue for those who do not have medical insurance. It is also an access issue for those with insurance because some insurance companies do not have an official classification of Cabenuva as a pharmaceutical or healthcare benefit. Thus, even though ViiV Healthcare has a payment assistance program for those who have commercial insurance, the lack of clarity of benefit status means ambiguity in which costs will be billed to patients and which to insurance companies.[2]

Studies have shown that multiple social determinants of health affect many patients' ability to maintain adherence regarding pill regimens. The same challenges apply to Cabenuva. Cabenuva must be administered in a healthcare setting by a health professional. Even though the visits would only be monthly or bi-monthly, that still poses a challenge for PLWH who lack reliable and affordable transportation. While pill forms of the medications are available for emergency doses if a patient misses an injection, on-time injections of Cabenuva are imperative to ensure resistance to either of the components does not occur.[2] Shipping doses of emergency medication is not viable for people with unstable housing or living situations where receiving medication is not optimal.

Photo Source: HIV.gov

Widespread adoption of Cabenuva also requires providers to adopt changes. Currently, with HIV healthcare, patients on established therapy only see their infectious disease doctors once or twice a year, and the responsibility of pill treatment adherence is on the patient. With Cabenuva injections, the facility's operational flow is disrupted since the injections require more frequent visits. Additionally, responsibility is added to the medical practices by ensuring patients do not miss their injection appointments and following up with them when they do. Moreover, practitioners must be trained in the z-track injection technique required for the intramuscular injection and have proper refrigeration equipment to store the Cabenuva between 2°C and 8°C.[8]

The recent data from the Cabenuva trial is a promising step in the right direction, though not without its challenges. Joey Wynn adds, “Understandably, there are issues of access for those on private insurance, clinic flow issues, and limited distribution shortages, meaning advocates need to demand improved pipeline delivery from the manufacturer so people can get what they need/want/require with less difficulties.” Riley Johnson adds, “no degree of adherence is possible if the medication is not available or accessible.” To ensure the success of the LAI landscape, policy and holistic community support will be required to keep up with the advances of science.

[1] GSK. (2024, February 21). Press release: LATITUDE phase III interim trial data indicates ViiV Healthcare’s long-acting injectable HIV treatment Cabenuva (cabotegravir + rilpivirine) has superior efficacy compared to daily therapy in individuals living with HIV who have adherence challenges. Retrieved from https://www.gsk.com/en-gb/media/press-releases/latitude-phase-iii-interim-trial-data-indicates-cabenuva-has-superior-efficacy-compared-to-daily-therapy/

[2] Pinto, R. M., Hall, E., & Tomlin, R. (2023). Injectable Long-Acting Cabotegravir-Rilpivirine Therapy for People Living With HIV/AIDS: Addressing Implementation Barriers From the Start. The Journal of the Association of Nurses in AIDS Care: JANAC, 34(2), 216–220. https://doi.org/10.1097/JNC.0000000000000386

[3] Simoni, J. M., Tapia, K., Lee, S. J., Graham, S. M., Beima-Sofie, K., Mohamed, Z. H., Christodoulou, J., Ho, R., & Collier, A. C. (2020). A Conjoint Analysis of the Acceptability of Targeted Long-Acting Injectable Antiretroviral Therapy Among Persons Living with HIV in the U.S. AIDS and Behavior, 24(4), 1226–1236. https://doi.org/10.1007/s10461-019-02701-7

[4] Hart, R. (2024, February 21). First long-acting injectable HIV treatment works better than daily pills for some patients, GSK says. Retrieved from https://www.msn.com/en-us/health/other/first-long-acting-injectable-hiv-treatment-works-better-than-daily-pills-for-some-patients-gsk-says/ar-BB1iDCzR?ocid=socialshare

[5] Bernstein, L. (2021, January 22). FDA approves breakthrough injectable HIV medication. Retrieved from FDA approves breakthrough injectable HIV medication

[6] Liu, A. (2024, February 21).GSK’s long-acting HIV med Cabenuva beats daily therapy in patients who've faced adherence hurdles. Retrieved from https://www.fiercepharma.com/pharma/cabenuva-trial-modified-gsks-long-acting-hiv-med-beat-daily-therapy-patients-adherence

[7] VIIV Healthcare. (2024, January). Cabenuva. Retrieved from https://www.cabenuva.com/  

[8] De Vito, A., Botta, A., Berruti, M., Castelli, V., Lai, V., Cassol, C., Lanari, A., Stella, G., Shallvari, A., Bezenchek, A., & Di Biagio, A. (2022). Could Long-Acting Cabotegravir-Rilpivirine Be the Future for All People Living with HIV? Response Based on Genotype Resistance Test from a Multicenter Italian Cohort. Journal of personalized medicine, 12(2), 188. https://doi.org/10.3390/jpm12020188

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. 

Prior Authorization: A Growing Headache for Patients

By: Ranier Simons, ADAP Blog Guest Contributor

Amidst all the complicated machinations of the U.S. healthcare system, the ultimate focus should be the patient's best interests. Unfortunately, many barriers interfere with physicians and patients working together for the most optimal outcomes. One of those pervasive barriers is prior authorization. Prior authorization (PA) is when insurers require healthcare providers to obtain pre-approval for things such as services, procedures, durable medical goods, and medications. The pre-approval is required before insurance companies will agree to pay for a requested intervention. Insurance industry messaging claims that prior approvals are in the best interests of patients to make sure that inappropriate care is not needlessly utilized, thus saving them money, lowering healthcare system expenditures, and ensuring only the most effective options for care are chosen by physicians. 

Photo Source: Salon (Getty Images/FG Trade)

However, PAs are not in patients' best interests but are a method of cost control or cost-cutting to save insurers money. Jen Laws, CEO of Community Access National Network, states, “Taking a note from auto carriers, payers have been utilizing prior authorization as a bet that most folks don't have time, energy, or navigation experience enough to fight for the care patients rightly need. It's delay and deny on the bet that patients will give up." PAs have detrimental effects on patient health outcomes, interfere with the patient-physician relationship, unduly burden physicians, and ultimately generate more healthcare spending, because of medical interventions needed because of the poor patient outcomes they can cause.

For several years, many groups have been fighting for prior authorization reform. Recently, in a step in the right direction, the Centers for Medicare and Medicaid Services (CMS) released their Final Prior Authorization and Interoperability Rule (CMS-0057-F).[9] Even though it is a win for patients and providers, it is not enough. As such, legislatures nationwide are working on state-level legislative remedies to the prior authorization problem. Some states have already passed more stringent measures, and others have bills in process.[6]

The new rule has many details, but there are some notable highlights. A significant problem with the prior authorization process is the excessive time burden placed on medical providers.[1] According to a 2022 American Medical Association (AMA) survey, physicians and their staff spend an average of about 14 hours, roughly two business days per week, completing around 45 PAs per physician.[7] Historically, much of the PA process is manual, requiring long phone calls and forms to be filled out, faxed, or sent through postal mail. The CMS rule helps with this by requiring insurers to support an electronic prior authorization process that is embedded in the physician’s electronic health records. This streamlines the process and helps with automation since the electronic health record is a centralized place where physicians do much of their work. Patients regularly see their physician typing things like notes and prescription requests in the examination room during their visits.

Photo Source: American Medical Association

Another remedy the new CMS rule delivers is transparency. When PAs are often denied, physicians and patients don’t know why since the insurers don’t give clear reasoning. They respond with opaque responses such as deeming a requested medical intervention as ‘medically unnecessary’. The new rule requires insurers to give very specific reasons for denial. This will not only enable providers to refute and appeal denials more effectively but can result in more accountability of insurers. Having to provide precise reasoning will result in insurers being more cautious with denials. CMS furthers transparency requirements by requiring metrics reporting. The new rule requires insurers to publicly report their actions such as how often they approve and deny PAs, how long they take to make decisions, as well as the frequency of denials and approvals by medical ailment category. This will enable patients to be informed consumers as they shop for insurance coverage. 

The new CMS rule has many positive details but also limitations. The ruling does not pertain to prescription drugs. The ruling also only applies to government-regulated health plans such as Medicaid, CHIP, Medicaid managed care plans, and plans on the healthcare exchange. The electronic PA requirement goes into effect in 2027, and the metric reporting goes into effect in 2026. To create more substantial changes, some states have already passed PA reform legislation, and many others are working on it. The District of Columbia has already passed legislation with some of the same aspects as the CMS ruling, but also goes further.

The District of Columbia passed Bill 25-124, which became ACT 25-301 in November 2023.[5] The act has an electronic PA requirement in the same manner as the CMS rule. It requires all review entities to accept and respond to PA requests using their NCPDP SCRIPT Standard ePA transaction by January 1, 2024.[5] The D.C. Act goes beyond the CMS ruling regarding required timeframes for PA decisions. The CMS ruling requires review entities to respond within 72 hours for expedited urgent care PA requests and within seven days for standard requests. The D.C. Act requires review entities to respond within 24 hours with approval or denial of urgent care PA requests.[5] For standard requests, it specifies a response within three business days by electronic portal or five business days by mail, fax, or telephone.[5]

North Carolina is one of the states with pending PA legislation. Its details also contain some requirements that are more stringent than those of CMS. Like the D.C. Act, one highlight is its timetable for review response specification. For non-urgent healthcare services PA requests, an insurer must decide within 48 hours of obtaining all required information and within 24 hours for urgent care requests.[10] The North Carolina bill also contains transparency language. Suppose the reviewing entity of an insurer questions the medical necessity of a physician’s PA request. In that case, it must notify the provider within five business days of the date of the request.[10] Also, before issuing a PA denial, the insurer must allow the affected provider to discuss the need for the medical service on the telephone directly with the medical doctor who will be responsible for the review determination.[10]

Photo Source: American Medical Association

Current and developing state legislation model suggestions supported by the AMA. One of those is “gold carding”. Five states have already passed gold carding legislation: Louisiana, Michigan, Texas, Vermont, and West Virginia.[6] In gold carding, six months of a medical practice or provider’s prior authorizations are reviewed. If 90% of the requests are approved, then that practice or provider is not subject to any PA requirements for six months.[6,8] Maintaining those statistics would be required to maintain the privilege. While on the surface, it seems to be a good way to reduce the volume of PAs, thus reducing administrative time waste, it has a downside. As Jen Laws points out, “Gold carding can come with the incentive for payors to become even more aggressive in their PA and other UM (utilization management) practices because it rests on the idea that a provider can "prove" they don't need review. The best way around that is to merely get more aggressive with UM, moving the goalpost to an unattainable standard.”

The adverse effects of prior authorizations are well documented. They cause physician burnout, interfere with the patient-provider relationship, and cause delays in patient care.[3,7] Delays in patient care can result in avoidable poor patient health outcomes and exacerbation of disease states.[2,3,4] In diseases such as cancer, timely and very personalized treatment can be a matter of life and death. Physicians make very informed decisions about their patients’ medical care. When physicians make evidence-based treatment determinations for their patient's best health, they should not be undermined by profit-centric cost-cutting measures that are not based on proper consideration of current medical data. Pushing forward to ensure transparency and accountability is critical. It will take continued federal and state efforts to create a healthcare landscape that genuinely has the patient at its center.

[1] Medical Ecconomics. (2023, August 4). 2023 Physician Report: The latest physician salary, productivity and malpractice cost data. Retrieved from https://www.medicaleconomics.com/view/2023-physician-report-the-latest-physician-salary-productivity-and-malpractice-cost-data?slide=18

[2] Sausser, L. (2023, December 2023). Cancer patients face frightening delays in treatment approvals. Retrieved from https://kffhealthnews.org/news/article/cancer-patients-prior-authorization-treatment-delays/

[3] Merrill, J. R., Flitcroft, M. A., Miller, T., Beichner, B., Clarke, C. N., Maduekwe, U. N., Wang, T. S., Dream, S., Christians, K. K., Gamblin, T. C., Evans, D. B., & Kothari, A. N. (2023). Patterns of Unnecessary Insurer Prior Authorization Denials in a Complex Surgical Oncology Practice. The Journal of surgical research, 288, 269–274. https://doi.org/10.1016/j.jss.2023.03.013

[4] Miller, T. (2023, November 7). Big insurance met its match when it turned down a top trial lawyer's request for cancer treatment. Retrieved from https://www.propublica.org/article/blue-cross-proton-therapy-cancer-lawyer-denial#:~:text=Blue%20Cross%20and%20Blue%20Shield%20denied%20payment%20for%20the%20proton,he%20was%20ready%20to%20fight.

[5] Council of the District of Columbia. (2023, November 15). D.C. ACT 25-301 Prior Authorization Reform Amendment Act. Retrieved from https://lims.dccouncil.gov/downloads/LIMS/52301/Signed_Act/B25-0124-Signed_Act.pdf?Id=180462

[6] Sable-Smith, B. (2024, February 12). States target health insurers' 'prior authorization' red tape. Retrieved from https://kffhealthnews.org/news/article/states-health-insurers-prior-authorization-legislation-gold-carding/

[7] American Medical Association. (2023). 2022 AMA prior authorization (PA) physician survey. Retrieved from https://www.ama-assn.org/system/files/prior-authorization-survey.pdf

[8] American Medical Association. (2024, January 24). Advocacy in action: Fixing prior authorization. Retrieved from  https://www.ama-assn.org/practice-management/prior-authorization/advocacy-action-fixing-prior-authorization

[9] Centers for Medicare and Medicaid Services. (2024, January 17). CMS Finalizes rule to expand access to health information and improve the prior authorization process. Retrieved from https://www.cms.gov/newsroom/press-releases/cms-finalizes-rule-expand-access-health-information-and-improve-prior-authorization-process

[10] North Carolina General Assembly. House Bill 649 - Ensure Timely/Clinically Sound Utiliz. Review. Retrieved from https://www.ncleg.gov/Sessions/2023/Bills/House/PDF/H649v0.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. 

NHBS-Trans Sheds Light on HIV Prevalence Among Transwomen in the United States

By: Ranier Simons, ADAP Blog Guest Contributor

Transgender women have disproportionately higher rates of HIV. It Is estimated that 14% of transwomen in the United States are living with HIV. Numerous studies exist examining HIV in various populations and subgroups. However, data on the mechanisms of HIV in the transgender community is lacking. The Centers for Disease Control & Prevention (CDC) uses data to determine who is most at risk for HIV, and that data comes from healthcare providers. Unfortunately, for a long time, there was no mandate for providers to count transgender patients. Historically, transgender women were categorized as gay and bisexual men, although they have vastly different needs. The 2015 update to the National HIV/AIDS Strategy prioritized data collection for trans people, and its mandate went into effect in 2018. Recently, the CDC released data from a systematic biobehavioral study conducted to examine HIV risk factors among transwomen.[1,2,3]

Photo Source: CDC

The CDC developed a surveillance system named National HIV Behavioral Surveillance Among Transgender Women (NHBS-Trans).[1] The purpose was to gather data specific to transgender women regarding HIV prevention, risk factors, testing services, and other social determinants affecting HIV treatment and overall health. From 2019 to 2020, the study gathered data from 1,609 transgender women from seven U.S. urban areas: Atlanta, Los Angeles, New Orleans, New York City, Philadelphia, San Francisco, and Seattle.[1] Trained interviewers administered anonymous questionnaires utilizing computer tablets and offered free blood rapid HIV testing. The participants were selected through respondent-driven sampling. This means that after an initial seed group of participants was identified through a referral from a community-based organization, they were asked to go out into their communities and recruit others. The study revealed that many factors contribute to the high rate of HIV among transwomen, with discrimination being one of the leading causes.

Approximately 42% of the study participants tested positive for HIV. Among the black subjects, 62% were living with HIV, 35% of the Hispanic and Latino participants, and 17% of the white participants.[2,4] The study data showed that the disproportionately high rate of HIV was due to factors such as lack of access to PrEP, discrimination in employment and healthcare access, homelessness, and even violence and harassment.[2,4]

Among all the participants, 17% had no health insurance, 7% had not visited a health provider in the past year leading up to the study, and 63% had household incomes at or below the poverty level. Additionally, 42% had experienced homelessness in the previous 12 months leading up to the study, 17% had been incarcerated, and 34% had received money or drugs in exchange for sex.[4] Employment discrimination was intertwined with a lack of healthcare access. People usually get healthcare coverage through their employment. Over 32% of the participants reported having great difficulty finding employment, with 10% stating they had been fired due to being transgender.[3,4] Without employment, many were without healthcare insurance. Lack of health insurance results in no access or poor access to HIV care and treatment, lack of access to PrEP, and lack of access to gender-affirming care.

Photo Source: iStock | Rights Purchased

Participants who were on Medicaid in states where Medicaid did not cover gender-affirming care were twice as likely to have difficulty finding employment.[3] Lack of employment leads to homelessness and housing instability. Moreover, difficulty finding employment leads some transgender women into sex work for survival, which is a high-risk factor for HIV transmission as well as an avenue into possible incarceration.[4] Lack of gender-affirming care also adversely affects HIV treatment and prevention. Studies have shown that transgender women receiving gender-affirming care are less likely to contract and transmit HIV.[5] This is due to the health education they receive with the care. Additionally, meeting the basic needs of identity allows transgender women to focus on other aspects of their health. Without gender-affirming healthcare, some transgender women take non-prescription hormones, which are potentially damaging to their health. Improper dosages, poor quality of medication, and lack of medical guidance can result in additional poor health outcomes. Moreover, some participants reported not seeking out PrEP or being inconsistent with their medicines out of fear of drug interactions with their hormone therapy. The study highlights the need to couple gender-affirming care with HIV prevention and treatment.

The study also revealed data regarding abuse and harassment. Approximately 54% of the transgender women in the study reported verbal abuse or harassment because of their identity, with 27% reporting physical abuse.[4] Of those reporting physical abuse, 15% reported the abuse from a sexual or intimate partner. Lack of social support and healthy surroundings adds to the mental stress and instability of the lives of these transgender women, which can also lead to illicit drug use as a way to cope. Eighteen percent of the participants had suicidal thoughts. Seven percent had previously made plans, and 4% had attempted suicide.

The study is not genuinely national since the sampling is from specific urban environments. However, it does highlight the dire need for more research to gather robust data regarding transgender women and HIV. Potentially, data can influence policymakers to create policies to facilitate beneficial access to HIV and gender-affirming care that improves their lives and respects their identities. It is essential to provide safe spaces where transgender women can receive culturally competent care coupled with access to medically sound interventions, prevention, and treatment specific to their needs. Policy intervention is also needed to remove transgender discrimination regarding employment and housing.

[1] Kanny D, Lee K, Olansky E, et al. Overview and Methodology of the National HIV Behavioral Surveillance Among Transgender Women — Seven Urban Areas, United States, 2019–2020. MMWR Suppl 2024;73(Suppl-1):1–8. DOI: http://dx.doi.org/10.15585/mmwr.su7301a1

[2] Adamczeski, R. (2024, January 28). Transgender women have a higher risk of HIV infections. A new CDC report reveals why. Retrieved from https://www.advocate.com/news/transgender-women-hiv-infections-discrimination

[3] Adamczeski, R. (2024, January 29). The real reason trans women have high HIV rates. Retrieved from https://www.hivplusmag.com/transgender/trans-women-high-hiv-rates

[4] Centers for Disease Control and Prevention. HIV Infection, Risk, Prevention, and Testing Behaviors Among Transgender Women—National HIV Behavioral Surveillance, 7 U.S. Cities, 2019–2020. HIV Surveillance Special Report 27. Retrieved from http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html. Published April 2021.

[5] Owen, G. (2023, April 28th). Surprising study indicates trans women in gender-affirming care contract HIV less often. Retrieved from  https://www.lgbtqnation.com/2023/04/surprising-study-indicates-trans-women-in-gender-affirming-care-contract-hiv-less-often/

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.