Despite Ongoing Chaos, Ryan White Program 2030 Plan Remains Relevant

By: Ranier Simons, ADAP Blog Guest Contributor

In December 2024, Ryan White HIV/AIDS Program (RWHAP) partners received a guidance letter about the Ryan White Program 2030 plan (RWP 2030) from the Health Resources Services Administration (HRSA). The guidance, in the form of a Dear Colleague Letter (DCL) did not include specific policy explanations or detailed implementation instructions, but rathe highlights of directives and unifying paradigms of action. Given the current political climate and the state of flux regarding public health programs and access to public health data on federal agency websites this letter might now be undermined. That said, it is also an acknowledgment of past successes and how they relate to future targets.

(Editor's Note: Some of the links included in the Dear Colleague Letter have already been scrubbed from their websites)

RWP 2030 maintains a focus on an efficacious, high standard of care for those presently benefiting from programs and services through the Ryan White HIV/AIDS Program (RWHAP). The DCL emphasizes the importance of increased efforts to find people living with HIV/AIDS (PLWHA) who are undiagnosed or who have fallen out of the care continuum and bring them into proper care. Data from August of 2024 indicates that 13 percent of the 1.2 million PLWHA in the U.S. are undiagnosed and unaware (HIV.GOV, 2024). That is roughly 156,000 individuals in danger of serious adverse health outcomes due to lack of treatment as well as the potential to unknowingly spread HIV. A combined 40 percent of PLWHA in the U.S. are undiagnosed or diagnosed and not receiving care. 

Great strides have been made regarding viral suppression, and a renewed focus on reaching untreated individuals is the RWP 2030’s aim to increase those numbers. From 2010 to 2023, viral suppression amongst those receiving care under the RWHAP increased from 69.5% to 90.6% (HRSA, 2024). Viral suppression does not happen overnight and is not a permanent self-maintaining endpoint. Reaching viral suppression requires consistent care, and maintaining it requires permanent care.

Source: HIV.gov

The DCL stresses the need for community-driven collaboration and planning. PLWHA live in populations and communities of significant heterogeneity. The RWP 2030 aims to equip people and entities with the resources, capacity-building tools, and training to create the infrastructures needed to meet the specific needs of identified communities. The letter states that success will require “collaboration across sectors, innovation in care delivery, and a commitment to addressing barriers to care” (HRSA, 2024). 

The RWP 2030 framework of leveraging partnerships, focusing interventions, and community engagement is the most effective mindset to have going forward (HRSA, 2024). Presently, there is much uncertainty concerning funding, policy, and potentially adverse effects of political expediency. The DCL reminds RWHAP recipients of the importance of being vigilant with the reevaluation of programs and services to maximize the allocation of efforts to meet locally identified needs. Monitoring is imperative to balance furthering the appropriate care of those already receiving RWHAP services and engaging people new and returning to care.

HRSA plans to release specific guidance and development of tools to support RWHAP recipients in realizing RWP 2030 goals. Some of the education on best practices for outreach, linkage to, and engagement in care is not available as many HIV resources, such as TargetHIV.org, are not available, having been removed from online access by the current administration as of the time of this blog. This fortifies the need for innovative measures of collaboration and the inclusion of non-traditional partnerships to strengthen infrastructures of care. In addition to training and resources, HRSA plans to hold a series of listening sessions in 2025 (HRSA, 2024). The goal is to facilitate exposure to a diverse range of perspectives and experiences associated with navigating the hurdles and pitfalls on the journey of ending the HIV epidemic.

Photo Source: HRSA HIV/AIDS Bureau

Program letters are not only a press statement or documentation for the purposes of public record. HRSA DCLs are a source of information, motivation, hope, and reassurance that RWHAP recipients are supported and are not isolated islands. Reminding entities of their mission and identifying the means to find the help they need is vital for programmatic success. How this plan plays out under the ongoing attacks on public health programs still remains to be seen.

[1] HRSA. (2024, December 20). Dear Colleague Letter. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/grants/rw-program-letter-2030.pdf

[2] HIV.GOV. (2024, August 15). U, S. Statistics. Retrieved from https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics#:~:text=Approximately%201.2%20million%20people%20in,sex%20with%20men%20(MSM)

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. 

Injurious Tactics Associated with Alternative Funding Programs are Growing

By: Ranier Simons, ADAP Blog Guest Contributor

Barriers to accessing prescription medications, especially specialty drugs, is a constant challenge for many patients in the healthcare expenditure ecosystem. It is made more complicated by the constant tug-a-war between public payors, insurance companies, pharmacy benefits managers (PBMs) and drug manufacturers over cost. Unfortunately, patient harm is often the collateral damage of the insurers attempting to cut costs while maximizing profits. To save money, alternative funding program (AFP) utilization by insurers and PBMs is a gimmick increasing in popularity. The injurious tactics associated with AFPs are growing, and more data is being collected regarding the problems they are causing patients.

Photo Source: MMIT

A recent study indicated that 75% of employers utilizing AFPs plan to continue their use, with one in three large employers considering using them in the future (Doxey & Balicki, 2024). AFPs operate by partnering with employers to fraudulently, for their profit, utilize programs offered by drug manufacturers and private charitable entities that are in place to help needy patients. It also targets certain public safety net programs, such as State AIDS Drug Assistance Programs (ADAPs).

They do this by manipulating employer plans to take advantage of copay assistance programs, patient assistance programs (PAP), and even international mail orders. In return for employers saving money, patients are suffering. A patient experience study involving a survey of 227 patients utilizing AFPs showed that 88% reported stress and anxiety due to medication uncertainty due to coverage denial, the average wait time to receive medication was 68.2 days, and 24% explained the delay caused them adverse side effects including worsening of their condition (Wong et al., 2024).

One of the most dangerous AFP practices is drug importation. In this case, AFPs force patients to take non-FDA-approved drugs from overseas. They, in essence, broker personal drug importation between patients and unlicensed illegal foreign pharmacies (Partnership for Safe Medicines, 2024). First and foremost, in most circumstances, personal importation of drugs and devices into the U.S. is illegal (FDA, 2024). In the narrow instances where the FDA allows some permissible discretion with importation, the expectation was for specific individual needs. It was not for large-scale utilization by employers and AFPs. As explained by Shabbir Imber Safdar, Executive Director of the Partnership for Safe Medicines (PSM), “Employers participating in these plans are opening themselves up to enormous legal liability when they encourage their employees to take a risk with their medical care in order to save the employer a few dollars.”

Photo Source: Partnership for Safe Medicines

Under the drug importation scheme, AFPs convince employers to carve out expensive and specialty medications from coverage to source them from outside of the United States for lower prices (Partnership for Safe Medicines, 2024). Patients using these self-funded employer plans are told they must agree to foreign-sourced medication to receive their needed therapies. To avoid violating essential health benefit (EHB) coverage laws, some employers simply encourage patients to use foreign-based medications instead of carving out medications from coverage. Employers explain to patients that they will pay less money if they buy the foreign drugs in comparison to what they’d be charged by the plan otherwise. 

The foreign sources used to obtain these medications are outside of the U.S. Drug Supply Chain Security Act tracking system known as “track and trace” (Partnership for Safe Medicines, 2024). As such, patients are in danger of receiving dangerous counterfeit drugs or drugs that have not been appropriately handled. Safdar says, "These medicines are not inspected or approved by the U.S. Food and Drug Administration. Their packaging and safety instructions are not the same as the U.S. product, if they're even real at all, and they're dispensed by unlicensed foreign businesses." Patients have no protection or recourse if they are harmed by counterfeit or poorly handled foreign-sourced medication. Additionally, the medications most commonly targeted for AFP drug importation schemes are used to treat asthma, cancer, epilepsy, hepatitis, HIV, pulmonary hypertension, and organ rejection (Partnership for Safe Medicines, 2024). These vulnerable populations could suffer fatal harm from counterfeit or ineffective medications.

Using the Freedom of Information Act (FOIA), PSM analyzed 16 towns and school districts, identifying over $4 million of imported medication invoices. Employers are enticed by the cost savings presented by AFPs. In one city, PSM found that the base cost of one Trulicity prescription was $1,100.00 without foreign drug importation and only $438.00 with the drug being imported. Several widely used HIV antiretrovirals were also found on these invoices: Biktarvy, Dovato, Genvoya, and Descovy. Employers that utilize the AFP drug importation programs pay fees to the AFPs. Safdar further explains that employers usually pay a percentage of the perceived “savings” difference between the regular market costs of the drugs compared to the foreign import costs. Thus, employers are spending money for the program in addition to what they are paying to purchase the imported drugs. AFPs are purely profit-driven and are not in service of helping patients.

All AFP schemes are predatory, whether they are exploiting PAPs, utilizing copay accumulators, or foreign drug importation schemes. However, AFPs are also discriminatory. Specifically, they are discriminatory against low-income patients. The PAPs that AFPs exploit, whether they be a manufacturer or charitable organization, usually have income threshold requirements. Thus, the patients likely to be approved for the programs are those with lower incomes (Prescription, 2023). Employees with higher incomes will not qualify, and subsequently, the employer plan will end up covering their medication under standard cost-sharing. However, the lower-income employees are forced to remain on the AFP-obtained PAP.

Photo Source: Optum for Business

In this manner, lower-income employees face higher barriers to medication access. However, they are paying the same premiums as other employees whose income disqualifies them from utilizing fraudulent PAP enrollment (Prescription, 2023). Low-income employees are subject to delays due to mail-order pharmacy requirements and the stress of navigating the bureaucracy of application and approval of the PAP access via the AFP. Employees on standard covered medications can start their treatment immediately upon receiving a prescription from their doctor. Patients prescribed “carved-out” medications are subject to suboptimal care.

Patients expect the insurance plans they pay for to provide the coverage they need. By utilizing deceptive AFPs, employers with self-insured health plans, both large and small, do not fulfill their fiduciary duties nor the promise of patient care. For the sake of profit, AFPs endanger patients' health and well-being, impede patient assistance entities' ability to provide help to those genuinely in need and violate the law. Outlawing them will protect the vulnerable workers they exploit and add some stability to the presently fragile healthcare ecosystem.

[1] Doxey, P., Balicki, C. (2024). The Present and Future of Alternative Funding Programs for Specialty Drugs. Retrieved from https://leavittpartners.com/the-present-and-future-of-alternative-funding-programs-for-specialty-drugs/

[2] The Partnership for Safe Medicines. (2024). Alternative Funding Programs: Offshoring patients, importing risks. Retrieved from https://www.safemedicines.org/2024/04/afps-offshoring-patients-importing-risks.html

[3] Prescription for Better Access. (2023, November 17). 12: How Alternative Funding Programs Exploit Patient Assistance Programs (Podcast). Retrieved from https://prescriptionforbetteraccess.com/12-how-alternative-funding-programs-exploit-patient-assistance-programs/

[4] United States Food and Drug Administration. (2024, October 8). Personal Importation. Retrieved from https://www.fda.gov/industry/import-basics/personal-importation

[5] Wong, W. B., Yermilov, I., Dalglish, H., Bienvenu, L., James, J., & Gibbs, S. N. (2024). A descriptive survey of patient experiences and access to specialty medicines with alternative funding programs. Journal of managed care & specialty pharmacy, 30(11), 1308–1316. https://doi.org/10.18553/jmcp.2024.30.11.1308

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. 

Harvard Pilgrim Health Care Offered Discriminatory Plans to People Living with HIV

By: Ranier Simons, ADAP Blog Guest Contributor

Discrimination is nothing new for people living with HIV/AIDS (PLWHAs), as it impacts multiple facets of their daily lives. Aside from HIV-related discrimination in employment, housing, healthcare, and criminal justice, an often-overlooked area is insurance. Discriminatory plan design refers to the barriers health insurance companies impose on PLWHAs thereby limiting access to care and treatment for years, advocacy groups have battled insurers with public scrutiny and, in some cases, litigation (Andrews, 2016.) Despite some coverage improvements, complaints and lawsuits continue as insurers maintain practices in non-compliance with federal law. 

Photo Source: AIDS Foundation of Chicago

One recent large plan instance of discriminatory coverage involved Harvard Pilgrim Health Care (HPHC). In November of 2024, the HIV+Hepatitis Policy Institute filed discrimination complaints against HPHC because their Core 4-Tier and Core 5-Tier plans in Maine, New Hampshire, and Rhode Island contained inadequate coverage of HIV antiretrovirals in violation of the ACA. In solidarity of the cause, several other groups sent a letter to the insurer. A few of the groups included were the Federal AIDS Policy Partnership (FAPP), HealthHIV, NASTAD, and AIDS Alabama (HIV+HEP, 2024).

The U.S. Department of Health and Human Services (HHS) guidelines recommend four preferred treatment regimens as initial HIV antiretroviral therapy: Biktarvy, Dovato, Symtuza, or a combination of Tivicay with either Truvada or Descovy (“Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents With HIV,” n.d.). The plans only covered Dovato or Tivicay + Truvada. Biktarvy is a single-pill regiment prescribed to over 49% of PLWH and should be covered (HIV+HEP, 2024). Dovato was covered but is not appropriate for PLWH with high viral loads or HIV that is resistant to lamivudine or dolutegravir. The plans excluded Symtuza, even though it is the only recommended treatment for PLWH who have taken long-acting injectable PrEP (cabotegravir) and have possible HIV resistance to Integrase strand transfer inhibitors (INSTI) (HIV+HEP, 2024). There are other clinical situations where HHS guidelines recommend Delstrigo, Odefsey, Triumeq, and a combination of Prezcobix and Epzicom as initial regimen alternative therapies. The plans covered only Odefsy and Triumeq (HIV+HEP, 2024).

When patients lose access to covered medications, they not only experience lapses in treatment but sometimes must change to treatments that are not the best for them. Sometimes, even alternative therapies still result in a financial burden or non-adherence due to treatment. If a patient is moved from a single-pill regimen to a multi-pill treatment, they are likely to have issues staying consistent with their treatment plan (HIV+HEP, 2024). Lack of coverage on one plan may also force a patient to choose a different one that may cover their needed medication but has adverse financial effects.

Photo Source: HIV + HEP Policy Institute

As a result of advocacy bringing public awareness directed at state policy leadership and insurance carriers, HPHC reversed its problematic coverage decisions and updated the Maine, New Hampshire, and Rhode Island formularies at the end of December. For 2025, they now cover eight complete initial HIV treatment regimens: Biktarvy, Dovato, Symtuza, Tivicay (in combination with Truvada or Descovy), Delstrigo, Odefsey, Triumeq, and Prezcobix (in combination with abacavir and lamivudine) (HPHC, 2025). While this is progress, the medications are located on the highest drug tiers of the formularies. This may render the formularies clinically effective, but they are still cost-prohibitive. Drugs on the highest formularies have the highest cost-sharing for patients, requiring them to pay significant percentages of the drug's prices as co-insurance. A high financial burden is still a barrier to access and effective care. 

As Tim Horn, Director of Medication Access with NASTAD, points out, “Relegating virtually all branded antiretrovirals to the highest cost-sharing tiers has been associated with co-insurance that typically exceeds 25% of the retail cost of the prescribed antiretroviral drug product(s), which can be considerable costs, certainly for plan beneficiaries but also for safety net programs like state ADAPs.” Director Horn also adds, “ADAP-funded insurance programs providing premium and cost-sharing support for people living with HIV are likely important factors in these carriers' decisions to ultimately engage in discriminatory formulary design practices. Of course, it is vitally important that ADAPs are able to provide premium and cost-sharing support for their clients and, likely, a significant proportion of otherwise uninsured people living with HIV in these states.”

Insurance companies do not want ADAPs to utilize their plans because they are a built-in permanent population of covered lives requiring expensive medication. Director Horn further explains, “Carriers, particularly those operating in states where few other carriers or Marketplace plans, likely consider ADAPs making their plans affordable for people living with HIV as a risk to their bottom lines. The result, as we saw with the initial Harvard Pilgrim Health decision to remove a huge swath of important antiretroviral drugs from its core formularies in three states, can be profoundly cynical and discriminatory practices that can have serious repercussions for both people living with HIV and the vitally important, yet fiscally constrained, HIV programs, such as state ADAPs.”

According to Carl Schmid, Executive Director of the HIV+Hepatitis Policy Institute, more vigorous enforcement would be a solution to discriminatory plan design. For example, in Texas, the Affordable Care Act guidelines are not enforced by the state insurance regulator but are enforced by the federal government. Moreover, the federal government constructs templates delineating ACA appropriate coverage guidelines for insurance plans to follow. Schmid explains that the templates in use are outdated, thus not reflecting current best practices. Hence, the federal government is not effectively engaging in enforcement. 

Unfortunately, advocacy groups and public outcry are how most insurance companies’ discriminatory plan malfeasance comes to light. Currently, many other grievances are being elevated and watched. Two, in particular, involve Medica and Community Health Choice Texas. HIV + HEP Policy Institute filed complaints against Medica in Minnesota and Iowa for inadequate recommended coverage in addition to placing all HIV antiretrovirals on their highest tiers. Their filing in Texas against Community Health Choice was also regarding inadequate HIV drug coverage regarding treatment guidelines (Burke, 2024).

The vigilance of advocacy groups, patients, and other entities is the only robust tool against discriminatory plan design. Until more effective federal and state enforcement occurs, there will not be any consistent ethical and legal behavior in the industry. The law, regulations, guidance, and implementation all must be aligned. As Schmid states, “Insurers will try to get away with as much as they can until they are caught.”

Patients living with HIV experiencing similar health plan discriminatory design are encouraged to alert the HIV + HEP Policy Institute at https://hivhep.org/contact/.

[1] Andrews, M. (2016, October 18). 7 Insurers Alleged To Use Skimpy Drug Coverage To Discourage HIV Patients. Retrieved from https://kffhealthnews.org/news/7-insurers-alleged-to-use-skimpy-drug-coverage-to-discourage-hiv-patients/

[2] Burke, J. (2024, December 17). Press Release. Retrieved fromhttps://hivhep.org/wp-content/uploads/2024/12/hiv-discrimination-complaints-maine-harvard-pilgrim-12.17.24.pdf

[3] Guidelines for the use of antiretroviral agents in adults and adolescents with HIV. (n.d.). In Centers for Disease Control and Prevention, U.S. Food and Drug Administration, Health Resource and Services Administration, & National Institutes of Health, Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents With HIV. https://clinicalinfo.hiv.gov/sites/default/files/guidelines/documents/adult-adolescent-arv/tables-adult-adolescent-arv.pdf

[4] Harvard Pilgrim Health Care. (2025, January 2). Press Release. Retrieved from https://www.harvardpilgrim.org/public/news-detail?nt=HPH_News_C&nid=1471978029629

[5] HIV + HEP Policy Institute. (2024, November 8). Substandard & Discriminatory HIV Medication Coverage & Plan Design by Harvard Pilgrim Health Care. Retrieved from https://hivhep.org/wp-content/uploads/2024/11/maine-harvard-pilgrim-HIV-complaint-11.8.24.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. 

Real-World Data Yields Promise for DoxyPEP

By: Ranier Simons, ADAP Blog Guest Contributor

Sexually transmitted diseases (STIs) are serious, highly communicable diseases that, left unchecked, can cause serious harm and even be life-threatening. Some, such as HIV, are incurable. Others can be disfiguring, cause sterility, or even brain damage and congenital abnormalities. (NIH, 2017). Three of the most common curable STIs are syphilis, chlamydia, and gonorrhea. In the U.S., over 2.4 million cases of syphilis, gonorrhea, and chlamydia combined were diagnosed and reported in 2023. (Press, 2024). A recent treatment innovation being adopted in the fight against STIs is doxycycline post-exposure prophylaxis, commonly referred to as doxyPEP. Clinical trials have shown promising results, and recent data shows the promise of its effectiveness in real-world populations of sexual networks.

Photo Source: Chicago Department of Public Health

DoxyPEP is the administration of 200 mg of doxycycline within 24 hours of unprotected sex. (Lou, 2025). Two previous clinical trials, the DOXY/PEP study in the U.S. and the DOXYVAC study out of France, indicate that DoxyPEP is effective for STI prevention. However, the sample sizes of the studies were small, and it is necessary to investigate the effectiveness of the intervention on larger populations out in the real world. The DOXY/PEP study contained 501 participants, and the DOXYVAC study included 556. (Molina, 2024; Susman, 2022). Two recent studies indicate the high efficacy of more extensive population-level doxyPEP implementation. One study was conducted in San Francisco, and the other studied populations in Northern California.

The study out of San Francisco was a population-level interrupted time series analysis of STI cases of men who have sex with men (MSM) and transgender women before and after the city issued citywide doxyPEP guidelines in 2022. (Sankaran, 2025) During the study period, there were 6694 cases of chlamydia, 9603 cases of gonorrhea, and 2121 cases of early syphilis. The study's objective was to observe the percentage differences between STI-modeled projected infections and observed STI rates after citywide doxyPEP was initiated. By the end of the study period, chlamydia cases had decreased -49.64% and early syphilis cases by -51.39% compared to projected case levels. However, there was an increase in gonorrhea cases compared with projections.

The Northern California study was a retrospective cohort examination of adult Kaiser Permanente Northern California (KPNC) members who were given HIV PrEP from November 1, 2022, through December 31, 2023. (Trager, 2025) In the study of 11,551 subjects, 2253 were dispensed doxyPEP. The primary outcome of the study was the examination of quarterly rates of STI positivity. Among those on doxyPEP, quarterly chlamydia positivity decreased from 9.6% before doxyPEP administration to 2.0% after. Gonorrhea positivity decreased from 10.2% to 9.0%. Syphilis positivity lowered from 1.7% to 0.3%. Rates remained stable among those who were not utilizing doxyPEP.

The CDC has officially recommended the use of doxyPEP for STI prevention for MSM and transgender women since June of 2024. (Lou, 2025). Counseling for doxyPEP is especially encouraged for members of this population who have had at least one STI infection in the past year. Notably, doxyPEP has had questionable efficacy related to gonorrhea. In the San Franciso study, there was an increase in gonorrhea cases. The Kaiser Permanente study showed lower rates of gonorrhea positivity in rectal and urethral site infections with an increase in pharyngeal gonorrhea rates. These findings support the hypothesis that pharyngeal tissues could be a reservoir of gonorrheal antibacterial resistance and the possibility of increased risk of gonorrheal antibacterial resistance overall.

These aforementioned studies indicate that doxyPEP is potentially an efficacious modality of STI prevention not just in clinical studies but also out in the real world. However, larger, more targeted studies must be conducted on wide populations to gain a deeper understanding. The San Francisco and Kaiser Permanente studies only show a correlation and not a causal relationship between doxyPEP and lowered STI rates because the studies are observational. Regardless, doxyPEP is making a significant dent in STI transmissions and only time will reveal its true efficacy and possibility of antibiotic resistance risk.

Photo Source: San Francisco City Clinic

[1] NIH. (2017). Why are sexually transmitted diseases (STDs) and sexually transmitted infections (STIs) of particular concern for pregnant women? Retrieved from  https://www.nichd.nih.gov/health/topics/stds/conditioninfo/concern#:~:text=STIs%20during%20pregnancy%20can%20also%20cause:&text=Miscarriage%20(fetal%20loss%20before%2020,Health%20complications%20in%20the%20mother

[2] Lou, N. (2025, January 6). DoxyPEP Rollout Tied to Dent in STI Epidemic in the Real World. Medpagetoday.com; MedpageToday. Retrieved from https://www.medpagetoday.com/infectiousdisease/stds/113668

[3] Molina, J.-M. (2024). Doxycycline prophylaxis and meningococcal group B vaccine to prevent bacterial sexually transmitted infections in France (ANRS 174 DOXYVAC): a multicentre, open-label, randomised trial with a 2 × 2 factorial design. Lancet. Infectious Diseases/˜the œLancet. Infectious Diseases. https://doi.org/10.1016/s1473-3099(24)00236-6

[4] Press, A. (2024, November 13). STI Epidemic Slows as New Syphilis and Gonorrhea Cases Fall in the U.S. Medpagetoday.com; MedpageToday. Retrieved from https://www.medpagetoday.com/infectiousdisease/stds/112879

[5] Sankaran, M., Glidden, D. V., Kohn, R. P., Nguyen, T. Q., Bacon, O., Buchbinder, S. P., Gandhi, M., Havlir, D. V., Liebi, C., Luetkemeyer, A. F., Nguyen, J. Q., Roman, J., Scott, H., Torres, T. S., & Cohen, S. E. (2025). Doxycycline Postexposure Prophylaxis and Sexually Transmitted Infection Trends. JAMA Internal Medicine. Retrieved from  https://doi.org/10.1001/jamainternmed.2024.7178

[6] Susman, E. (2022, July 29). Post-Exposure Doxycycline Reduces STIs. Medpagetoday.com; MedpageToday. https://www.medpagetoday.com/meetingcoverage/iac/99983

[7] Traeger, M. W., Leyden, W. A., Volk, J. E., Silverberg, M. J., Horberg, M. A., Davis, T. L., Mayer, K. H., Krakower, D. S., Young, J. G., Jenness, S. M., & Marcus, J. L. (2025). Doxycycline Postexposure Prophylaxis and Bacterial Sexually Transmitted Infections Among Individuals Using HIV Preexposure Prophylaxis. JAMA Internal Medicine. Retrieved from https://doi.org/10.1001/jamainternmed.2024.7186

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 Call to Serve: Patient Advocates Must Step-Up During T2

By: Brandon M. Macsata, CEO, ADAP Advocacy

In December 2024, ADAP Advocacy hosted its final Health Fireside Chat of the year as part of a broader Health Policy Retreat held in collaboration with the Community Access National Network. Despite hopes that the country's better angels would be reflected at the ballot box, both organizations had been preparing for what once seemed impossible: Trump Two (T2). POSITIVELY AWARE captured the sentiments shared by members of several national and state-level HIV advocacy and policy organizations from across the country prior to the Election. But now the rubber meets the road...

ADAP Advocacy CEO Brandon M. Macsata on The Morning Meeting, 12/09/24

At the Health Fireside Chat, political commentator Mark Halperin, editor-in-chief of 2WAY Interactive and host of The Morning Meeting podcast, pointedly dished out some straight talk about how patient advocates need to view the election as a call to serve. During the 2024 presidential election, Halperin scooped that President Joe Biden was dropping out of the presidential race days before the news broke, as well as three weeks prior to the election sounding the alarm that the Harris-Walz campaign was in big trouble in the swing states' suburbs. Agreeing to disagree in a few areas, most attendees in the room understood the merits of the advice being given by a political insider.

In fact, Halperin's message echoed the words of the late Bill Arnold (former President & CEO of the Community Access National Network and former founder and board co-chair of the ADAP Advocacy Association): leave your personal politics at the door! Halperin challenged the patient advocates and other stakeholders in the room to fight for a seat at the preverbal table. Ironically, it sounds awfully similar to The Denver Principles and the "Nothing About Us Without Us" principle!

To that end, ADAP Advocacy is returning some of its targeted advocacy efforts back to the very roots of the organization's founding some seventeen years ago...GRASSROOTS, that is. Back in 2010 during the height of the ADAP Crisis that landed over 1,300 people living with HIV/AIDS in thirteen states on waiting lists under the State AIDS Drug Assistance Program (ADAP), including a couple reported deaths, ADAP Advocacy helped to galvanize state grassroots networks to raise awareness and demand action by lawmakers. It is time to re-activate these state grassroots networks to push back against those dark forces seeking to gut the social safety-net, spread misinformation about science and vaccine efficacy, and perpetuate hate and stigma against marginalized communities...many of whom are disproportionately impacted by HIV.

ADAP Advocacy CEO Brandon M. Macsata at Florida town hall in 2010

Patient advocates are encouraged to contact ADAP Advocacy at info@adapadvocacy and indicate which state they're residing in, and how they might help with advocacy efforts. Aside from targeting federal lawmakers with constituent visits to better educate them, there will be plenty of opportunity for patient advocates to influence their state legislatures on many HIV-related issues.

Additionally, ADAP Advocacy leverages patient advocates and other public health stakeholders to serve on numerous patient advisory committees. This is a call to serve!

• ADAP State Drug Formulary Patient Advisory Committee

RE: Drug Formularies

Committee Chair: Rev. Alexander Garbera (Connecticut)

ADAP Advocacy works to improve access to timely, appropriate care and treatment for people living with HIV/AIDS being served by the State AIDS Drug Assistance Programs (ADAPs) under the Ryan White HIV/AIDS Program, including promoting robust drug formularies to best serve the needs of clients. Whenever feasible, ADAP Advocacy strongly supports "open" drug formularies. Approximately 20 seats need to be filled for this committee.

Learn more about the ADAP State Drug Formulary Patient Advisory Committee.

• ADAP Long-Acting Injectables Patient Advisory Committee

RE: Long-Acting Injectables

Committee Chair: Joey Wynn (Florida)

ADAP Advocacy strives to identify best practices on how to improve patient access to long-acting injectable therapies for the treatment of (and prevention of) HIV/AIDS. As general guidelines, they would be designed to help State AIDS Drug Assistance Programs (ADAPs), and other relevant payers, remove the barriers to accessing injectable HIV-related therapies, as well as other non-ARV, health-related injectable therapies. Three seats need to be filled for this committee.

Learn more about the ADAP Long-Acting Injectables Patient Advisory Committee.

• Ryan White Grantee 340B Patient Advisory Committee

RE: 340B Drug Pricing Program

Committee Chair: Guy Anthony

ADAP Advocacy ensures the voice of people living with HIV/AIDS shall always be at the table and the center of the discussion, including on how supports and services are financed under the Ryan White HIV/AIDS Program. To that end, reforming the 340B Drug Pricing Program is of paramount concern by returning the program to its original legislative intent: putting the patient first. Two seats need to be filled for this committee.

Learn more about the Ryan White Grantee 340B Patient Advisory Committee.

ADAP Advocacy has long prided itself on using its Values Statements to define its advocacy work. Among these values, that the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion. Patient advocates must step-up during T2, so join the fight!

Photo Source: shutterstock.com

Fireside Chat Retreat in Washington, DC Tackles Pressing Public Health Issues

By: Brandon M. Macsata, CEO, ADAP Advocacy, and Ranier Simons, ADAP Blog Guest Contributor

ADAP Advocacy hosted its Health Fireside Chat retreat in Washington, DC, as part of a broader health policy retreat convened collaboratively with the Community Access National Network (CANN) and its Industry Advisory Group. Board members from both organizations, as well as respective consultants and funders, assembled to discuss pertinent public health issues facing patients in the United States. The Health Fireside Chat convened on Friday, December 6th. The 27 diverse stakeholders discussed Trump Two, one-party rule returning to the nation’s capital, Inflation Reduction Act, 340B Drug Pricing Program, Prescription Drug Affordability Boards (PDABs), AIDS Drug Assistance Program’s drug formularies, and long-acting injectables. 

Photo Source: Getty Images

The Health Fireside Chat kicked off with a political recap from political commentator Mark Halperin, editor-in-chief - 2WAY Interactive. During the 2024 presidential election, Halperin had scooped that President Joe Biden was dropping out of the presidential race days before the news broke, as well as three weeks prior to the election sounding the alarm that the Harris-Walz campaign was in big trouble in the swing states' suburbs. 

Halperin shared his perspectives on what a second Trump Administration might look like, both from a potentially positive viewpoint, as well as a not-so-positive one. He offered some predictions on the Cabinet nominations, again noting where some could serve as potential change agents to improve public health – but also emphasized the unpredictability behind some of those same nominees if confirmed by the U.S. Senate. Halperin offered strong advice on the need to “get in the room” for the important conversations, which he argued won’t happen by merely attacking the incoming administration. Despite the extremes of both parties gaining more power, he offered examples whereby the “center” still holds a lot of weight over the legislative process to do good. Halperin took questions about what Trump Two and the GOP-led Congress might do for HIV, sharing even more advice on how to navigate those waters.

Mark Halperin discusses political landscape and health policy

The day-long strategy session was designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Health Fireside Chat. The following represents the attendees:

• Guy Anthony, President & Founder, Black, Gifted & Whole Foundation
• Donna Christensen, former Member of Congress
• Erin Darling, Associate Vice Pres. & Counsel, Federal Policy, Merck
• Amy Dempster, Director, Issue Advocacy and Alliances, Genentech
• Robert Dorsey, Chief of Staff, DC Department of Small & Local Business Development
• Alexander Garbera, Member, New Haven Mayor’s Task Force on AIDS, City of New Haven, CT
• Dusty Garner, Patient Advocate
• Patrick Ingram, Implementation Project Manager, Midwest AETC
• Ashley John, Director, Issue Advocacy, Novartis
• Lisa Johnson-Lett, Peer Support Specialist, AIDS Alabama
• Amanda Kornegay, President, Kornegay Consulting
• Jen Laws, President & CEO, Community Access National Network
• Darnell Lewis, Patient Advocate
• Brandon M. Macsata, CEO, ADAP Advocacy
• Travis Manint, Policy Consultant, Community Access National Network
• Maria Mejia, Patient Advocate
• Judith Montenegro, Program Director, Latino Commission on AIDS
• Theresa Nowlin, Patient Advocate
• Kassy Perry, President & CEO, Perry Communications Group
• Amanda Pratter, Director, Policy Advocacy, Gilead Sciences
• Kalvin Pugh, Policy Consultant, Community Access National Network
• Josh Roll, Director, Strategic Alliances & Issue Advocacy, Bristol Myers Squibb
• Ranier Simons, Policy Consultant, Community Access National Network
• Cindy Snyder, Retired
• David Spears, Creatives Consultant, ADAP Advocacy
• Jennifer Vaughan, Patient Advocate
• Joey Wynn, Grants & Contract Manager, Holy Cross Hospital

ADAP Advocacy is pleased to share the following brief recap of the Health Fireside Chat.

This particular Fireside chat did not have its standard format of specific formal presentations followed by discussion. It was more free flowing, consisting of an exchange of ideas surrounding many sub-topics and all surrounding public policy strategies. One of the most important threads of discourse was navigating policy and advocacy work in dealing with the incoming Trump Administration. A significant concern is figuring out how to manage hostile spaces in order to effect needed change.

The reality is that Trump is the president-elect. Moreover, albeit narrow, Republicans do have majority control across the board. This potentially makes it harder to achieve policy and advocacy goals because effecting change requires being in the room at the table when things are being done. A prevailing sentiment is that those rooms and tables are not welcome to racially and ethnically diverse, sexually diverse, and vulnerable communities that traditionally are adversely affected by and targeted by right-wing conservative ideology and policies. Yet, on some issues, Republican interests could be better aligned with patient interests on things like access to therapies (i.e., right-to-try), or reforming the abuses by big hospital systems and mega service providers under the 340B Drug Pricing Program.

An important focus of group discourse surrounded staying true to marginalized communities while speaking truth to power. The consensus is “wins” can be scored in unfriendly spaces by focusing on common ground, and in doing so doesn’t negate the deeply rooted concerns in other policy or political areas. As the late Bill Arnold often argued, “In this space, you have to leave your personal politics at the door if you’re going to achieve anything meaningful.” One example that was cited was the success in harm reduction policies by the North Carolina Harm Reduction in the Tarheel State.

Photo Source: JazzHR.com

Similarly, it is essential to not leave certain groups behind when broader community discussions are happening around legislation. It is necessary for advocates to figure out how to strategically call out grievances without compromising opportunities to access the players required to effect change. Sometimes, it is a matter of identifying the appropriate messenger for a specific audience. This does not mean the sociologically identified middle-aged white woman or cis-gendered heterosexual white male must be the vehicle to get a seat at every table. It does mean it’s wise to navigate relationships and understand the parties involved to determine the best messengers for different steps of strategic processes. The group had strong consensus that more women of color need to be invited to these proverbial tables. If for nothing else, t requires trust between the messengers and the communities they represent. The most effective messengers for an issue may not always look like or have the lived experience of some of the people for which they are representing. Thus, trust must be built in that they are effectively representing the needs and interests of affected communities when messengers are operating in hostile spaces. Humanizing issues with policymakers is a way to work through the muck and mire of ideological toxicity.

Another significant portion of this Fireside Chat discourse revolved around federal versus state issues. ADAP Advocacy collaborates with CANN to effect change on state and federal matters, as both have specific inroads of expertise. It is increasingly likely that more issues will be impacted at the state level more so than at the federal level. For example, there is a lot 340B-related activity and PDAB (Prescription Drug Affordability Board) legislation occurring on the state level. On the federal level, PEPFAR, Ending the HIV Epidemic, and the possibility of a Ryan White reauthorization are several issues of concern. There is strong evidence to suggest that the new incoming Republican majority in Congress plans to take a hard look at all the sunset programmatic laws as a way to achieve "savings" in the federal budget.

CANN shared a recently released video on PDABs, and how these boards are embarking on inadvertently creating a service delivery crisis for patients living with HIV. The video can be viewed online, here. Additionally, ADAP Advocacy shared a sneak peek of its new patient-centric advocacy tool highlighting why the 340B Program needs reform. Some discussion centered around California's Proposition 34, and embracing what voters achieved to bring better accountability and transparency to the 340B program. 

Photo Source: CANN

HIV is the tip of the spear that opens the door to conversation that makes room for navigating other community issues. Group discourse emphasized the need to strengthen the “Grassroots-to-Capitol Hill” pipeline of advocacy and influence. It was deemed necessary to enhance communication among major advocacy organizations such that there is a commonality of messaging on major issues when Capitol Hill interests inquire for guidance about community concerns. Additionally, it is necessary to identify members, such as some in the House, who can be ‘allies’ knowingly or unknowingly, to help influence the influencers to target things in a bipartisan manner to move the needle in favor of vulnerable and marginalized communities. Most importantly, it is imperative to open their eyes to how positively affecting change for these communities is beneficial to the general population as well.

ADAP Advocacy’s Health Fireside Chats are deeply rooted in the diverse voices who contribute valuable insight from various spaces of their expertise and lived experiences, all focused on the same issue of effecting positive change. In addition to lively and productive group discussion, individual spontaneous conversations occur between people who would otherwise not be in the same room. Virtual meetings are effective and have their place. However, there are times when the power and value of being physically present is undeniable.

Additional Fireside Chats are planned for 2025.

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. 

Anti-LGBTQ Laws are Propagating as Violence, Undermining Transgender Health

By: Ranier Simons, ADAP Blog Guest Contributor

As 2024 ends there is the painful reality that Donald J. Trump is returning to The White House, and with him promises of rolling back protections for LGBTQ people…and in some cases, even denying them care. The anxiety and fear are very authentic, and there is real world evidence of how discriminatory policies adversely impact already marginalized communities. One glowing example is how HIV prevention is undermined by LGBTQ-related attacks (legislation) and violence!

Photo Source: Le Monde

The concept of infrastructure does not always connote a physical embodiment of something. Infrastructure also encompasses societal structures, including culturally pervasive attitudes and legal policies. The problematic domestic and global infrastructure adversely affecting the lives of LGBTQ people is harmful to their well-being on many levels, including HIV prevention. The societal infrastructure set against LGBTQ contains aspects of physical violence as well as anti-LGBTQ legislation. The rate of violence perpetrated against LGBTQ in general, in addition to specific Transgender violence, is higher than the heterosexual general population.[1] Transgender violence and anti-LGTBQ laws and policies impede HIV prevention efforts, resulting in avoidable individual and public health adverse outcomes.

Over 500 anti-LGBTQ bills were introduced in the United States in 2023, almost tripling in number from 2022 to 2023.[2] This legislation is multi-focused, including attacks on health care, civil rights, public accommodations, and even education.[2] A recent study from the UNC Gillings School of Global Public Health found that there is a clear interconnection between discriminatory anti-LGBTQ legislation and HIV prevention.[3] Anti-LGBTQ legislation and policies adversely affect HIV prevention by increasing stigma and decreasing health care access.[3]

Photo Source: FiveThirtyEight

Many of the laws target transgender people and youth specifically, including efforts to deny gender-affirming care. This includes laws to prohibit the changing of gender or sex on identification or medical records. Some laws are purposed to ban the discussion of LGBTQ issues in schools. Regardless of the focus, the legislation contributes to LGBTQ stigma that even occurs in health settings.[4] This is due to a history of pathologizing LGBTQ identity, behavior, and desire in medicine.[4] Two-thirds of LGBTQ adults have experienced discrimination in the past year compared to four in ten non-LGBTQ adults.[4] The stigma fueled by anti-LGBTQ legislation is dehumanizing. It adversely affects the self-worth of individuals affected, which contributes to discouraging positive health-seeking behaviors and influences treatment when it is obtained.

Testing and PrEP use are significant tenets of HIV prevention. The UNC study showed that PrEP use was lower in states with more anti-LGBTQ legislation activity. Youth living in states with fewer anti-LGBTQ policies or counties with majorities of Democratic voters had higher levels of PrEP use. This positive increase in PrEP use was compounded for youth who lived in both a more progressive state and county.[4] Approximately 7.6% of U.S. adults identify as LGBTQ in 2024, and that number is increasing. Regular testing is a part of PrEP adherence. When stigma negatively affects access to testing, it simultaneously weakens the ability to maintain PrEP adherence even if PrEP is available.

Anti-LGBTQ laws are propagating concurrently as violence, specifically against transgender individuals, is an issue. One study out of San Diego, for example, showed that there were 229 documented cases of fatal violence against transgender women in the United States between 2013 and 2021.[5] The bulk of these cases, 78%, were Black victims, which included Afro-Latinas. Over half of these occurred in the South, followed in prevalence by the Midwest. This also reflects the number of recent anti-LGBTQ bills, with most being introduced in the South and the Midwest.[6] As of November 19, 2024, the Human Rights Campaign reports 372 transgender and gender-expansive victims of fatal violence from 2013 to the present.[7] These fatalities are only the reported ones. The actual numbers are estimated to be higher.

Prevention of violence against transgender people is a public health issue. Anti-LGBTQ policies and laws amplify the insecurity of daily existence that transgender individuals face. Adversity in dealing with daily survival is compounded by discrimination and lack of access to health care. Globally, on average, approximately 2/3 of transgender individuals are aware of their HIV status.[8] Also globally, the percentage of transgender individuals who avoid HIV testing due to discrimination and stigma is estimated to range from 47% to 73%. Additionally, those who have experienced discrimination in a healthcare setting are three times more likely to avoid seeking out healthcare than transgender people who have not experienced it.[8]

Photo Source: CDC

Social attitudes, the reality of violence, and anti-LGBT laws, including criminalization based on gender identity, contribute to the isolation of transgender people. Regardless of whether the isolation is externally or internally propagated, it adversely affects their mental health. Transgender individuals’ continuous exposure to harassment, bias, and discrimination contributes to poor mental health.[6] Poor mental health leads to things such as substance abuse and other detrimental patterns of behavior, which are barriers to effective HIV prevention, which includes medication adherence for transgender individuals living with HIV. 

Approximately one million people identify as transgender in the U.S., with 9.2% of those living with HIV. In addition to intravenous drug use, unsafe injection practices while injecting hormones can contribute to the increased likelihood of HIV transmission.[7] Sexual violence against transgender individuals also contributes to HIV transmission, especially since it is mainly unreported, and the victims do not seek out medical attention. Additionally, transgender people face housing and employment discrimination, which exacerbates challenges with maintaining proactive health maintenance, including HIV prevention.[7]

The adverse impact of HIV prevention challenges among people who identify as LGBTQ because of anti-LGBTQ laws and policies is significant. It is imperative to repeal toxic legislation and create beneficial policies that strengthen infrastructure to support HIV prevention and care. Legal protections and proactive policies will help fight against stigma and systemic structural barriers.

[1] Truman, J. L., Morgan, R. E., & U.S. Department of Justice, Office of Justice Programs, Bureau of Justice Statistics. (2022). Violent Victimization by sexual orientation and gender Identity, 2017–2020. In Statistical Brief. https://bjs.ojp.gov/content/pub/pdf/vvsogi1720.pdf

[2] Choi, A. (2024, January 22). Record number of anti-LGBTQ bills were introduced in 2023. Retrieved from https://www.cnn.com/politics/anti-lgbtq-plus-state-bill-rights-dg/index.html

[3] Kelly, N. K., Ranapurwala, S. I., Pence, B. W., Hightow-Weidman, L. B., Slaughter-Acey, J., French, A. L., Hosek, S., & Pettifor, A. E. (2024). The relationship between anti-LGBTQ legislation and HIV prevention among sexual and gender minoritized youth. AIDS (London, England), 38(10), 1543–1552. https://doi.org/10.1097/QAD.0000000000003926

[4] Dawson, L., Kates, J., Montero, A., and Kirzinger, A. (2024, September 30). LGBTQ Health Policy. Retrieved from https://www.kff.org/health-policy-101-lgbtq-health-policy/

[5] Halliwell, P., Blumenthal, J., Kennedy, R., Lahn, L., & Smith, L. R. (2024). Characterizing the prevalence and perpetrators of documented fatal violence against Black transgender women in the United States (2013–2021). Violence Against Women. https://doi.org/10.1177/10778012241289425 

[6] ACLU. (2024). Mapping Attacks on LGBTQ Rights in U.S. State Legislatures in 2024. Retrieved from https://www.aclu.org/legislative-attacks-on-lgbtq-rights-2024

[7] HRC. (2014, November 19). The Epidemic of Violence Against the Transgender & Gender-Expansive Community in the U.S. Retrieved from https://reports.hrc.org/an-epidemic-of-violence-2024#epidemic-numbers

[8] UNAIDS. (2021). HIV and Transgender and Other Gender-Diverse People: Human Rights Fact Sheet Series. Retrieved from https://www.unaids.org/sites/default/files/media_asset/04-hiv-human-rights-factsheet-transgender-gender-diverse_en.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.