Thursday, January 30, 2025

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.

Mousetrap with Rx medications on it
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.”

Alternative Funding Programs: Offshoring patients, importing risks Many alternative funding programs are lowering employer costs by endangering American patients.
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.

Optum Alternative Funding chart showing potential "savings"
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. 

Wednesday, January 22, 2025

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. 

The Affordable Care Act guarantees quality, affordable healthcare for all Americans.
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.

Recommended therapy table included in complaint against Harvard Pilgrim Health Care
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. 

HIV + HEP Policy Institute

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. 

Thursday, January 16, 2025

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.

Bottle of Doxycycline
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.

About DoxyPEP: https://www.sfcityclinic.org/services/sti-and-hiv-prevention/doxy-pep
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. 

Thursday, January 9, 2025

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
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!

Stock Image: Encourage employee voice, advocacy or support opinion, assistance or help, listen to ideas or communication, staff encouragement concept, businessman hand offer megaphone for employee to speak out.
Photo Source: shutterstock.com