Florida, Once Again, Imperils the Lives of People Living with HIV/AIDS

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

The state of Florida is in the process of revamping [deconstructing] its state’s AIDS Drug Assistance Program (ADAP) to exclude nearly half of its current enrollees. That plan hit a roadblock when the Florida Department of Health ignored the state statutes governing administrative procedure, which opened it to an administrative action filed by the AIDS Healthcare Foundation (AHF). The state withdrew its proposal but plans to proceed with it…this time, actually following the rules. It represents a temporary win, but much work remains to be done to protect Floridians living with HIV/AIDS reliant on the program. The Florida Legislature appears to be taking steps to address the crisis, as both the House and Senate budget proposals call for additional funding for the drug assistance program. The Senate's budget proposal includes $118 million, while the House's plan offers only $68 million, which represents about half of the funding needed.

How This Started

The emails started circulating on January 7th, 2026 (see Figure 1):

Figure 1 - Email from an ASO

“ADAP will reduce its [Federal Poverty Level (FPL)] eligibility from 400% to 100%.”

“[Co-pay] assistance will only be provided to participants who meet the new eligibility criteria.”

“ADAP-funded insurance coverage will be discontinued.”

“Only generic medications will be covered.” *

And the panic began.

State and national organizations across the country immediately began to both panic and organize:

How can we best support patients who will lose access to their medications, as well as organizations that may face closure as a result of these changes?

The State of Florida Confirms Its Plans

By Thursday, January 8th, 2026, the state of Florida clarified its plans:

Dear Colleagues,

As you are probably aware, ADAP will be moving to a financially sustainable model to benefit the largest population of ADAP clients. We will continue to support the current model (direct dispense, CVS Caremark and insurance) for a two month period to ensure ADAP clients have ample time to seek insurance and medication assistance, if no longer eligible to receive ADAP services through the department. Following this transition period, we will move to direct medication dispensing, capping the eligible federal poverty level at 130%, as well as implementing ADAP formulary changes starting March 1, 2026.

Regarding the formulary changes, Biktarvy will be removed and Descovy will be restricted to only those with renal insufficiency (CrCl <60). All other current ART medications including Tivicay will be available. However, we will monitor cost closely and adjust if needed. A few actions to consider:

• Upon follow up visits, transition to new ART regimen such as Tivicay plus Truvada, other Truvada-based or NRTI-based regimen in combination with integrase inhibitors, or alternative class outside of integrase inhibitors. Please refer to the treatment guidelines: Initiation of Antiretroviral Therapy | NIH.
• For patients on those Biktarvy or Descovy, ensure they have adequate medication until their next clinical visit prior to March 1st.
• For Descovy, providers are required to document the reason: due to CrCl <60 or renal insufficiency on the prescription note section.

Will keep you posted on any additional changes. As always, please reach out if you have any questions.

{Source: U. Choe, personal communication, January 06, 2026}.

So, What Happened?

Florida’s controversial Surgeon General, Joseph Ladapo, stated that the cuts were necessary to prevent a “…projected $120 million shortfall” (Shepard, 2026), but state and national advocates are asking whether or not taxpayer dollars have been illegally diverted or misappropriated (Adamczeski, 2026), pointing to a recent investigation that uncovered the DeSantis Administration’s diversion of $35 million in taxpayer dollars to wage campaigns against two ballot initiatives that would have legalized recreational marijuana use (Amendment 3) and overturned the six-week abortion ban passed by the state legislature (Amendment 4; Mower et al., 2025).

What Happened Next?

Shortly after these announcements, ADAP Advocacy remained publicly quiet, but behind the scenes, it was working on two fronts to help alleviate growing concern. One route has political ties to the governor, while the other option involves potential litigation. That is all the organization has been authorized to say at this time.

AHF almost immediately filed an administrative legal action, arguing that the state of Florida failed to comply with mandatory public rulemaking processes that require it to publish a “Notice of Proposed Rule” (NPR).

Publishing an NPR starts a mandatory 21-day procedural clock during which the public may submit written comments, requests for public hearings, workshop requests, and “lower-cost regulatory alternatives” (LCRAs).

The state of Florida issued this NPR on Wednesday, February 11th.

What This Would Mean for People Living with HIV/AIDS in Florida

The “cost-containment” measures announced by the Florida Department of Health are each, by themselves, draconian cuts that would have devastating negative impacts on People Living with HIV/AIDS (PLWHA) in the state.

In its NPR, Florida proposes the following changes to the program:

Lowering the Income Eligibility Threshold from 400% of the FPL to 130% of the FPL:

In 2023, there were an estimated 123,279 PLWHA in the state of Florida, of whom 36,834 (29.9%) were enrolled in Florida’s state ADAP program (National Alliance of State and Territorial AIDS Directors, 2025).

Should Florida move ahead with its plan to lower its income eligibility cap to 130%—roughly $20,345 / year for an individual—potentially up to half of patients currently enrolled (between 16,000-20,000 PLWHA) would be disenrolled (Figure 2).

Figure 2 – Florida State ADAP Enrollees by Percentage of the Federal Poverty Level, 2024

Photo Source: ADAP Advocacy

For context, capping income eligibility at 130% would make Florida one of just 4 state ADAPs with income eligibility caps below 300% of the FPL, along with Utah (250%), Texas, and Oklahoma (both 200%; ADAP Advocacy, 2025).

Significant and Potentially Deadly Changes to the ADAP Formulary:

ADAP rules currently require that ADAP formularies include at least one medication from each class of core antivirals. The NPR issued by the state of Florida eliminates this language altogether.

Patients who remain eligible for ADAP would face significant restrictions on the medications they can take. As detailed in the email from the Florida Department of Health, the most popular and commonly prescribed medication to treat HIV/AIDS, Biktarvy, will be removed from the formulary.

Biktarvy, a single-pill oral regimen made by Gilead Sciences, is taken by over 430,000 people living with HIV in the United States (Gilead Sciences, 2026), or 35.8% of PLWHA.

By removing Biktarvy from the ADAP formulary, the Florida state government will be forcing impacted patients to transition off of the medications that are the standard of care to older, less effective multi-pill regimens in order to “contain costs.”

While this initial statement has been removed from the NPR, AHF has advised state advocates that the Florida Department of Health is separately attempting to restrict access to Biktarvy and Descovy through an informal policy outside the rulemaking process.

Dismantling the Health Insurance Premium Plus and Marketplace Premium Assistance framework:

Additionally, Florida’s plan includes discontinuing health insurance continuation payments for ADAP clients. Insurance continuation is a process that allows state ADAPs to pay for various aspects of private health insurance coverage, including those plans made available to patients on the Health Insurance Marketplace under the Affordable Care Act, and the vast majority of state ADAPs participate in some form of insurance continuation purchasing, be that through premium assistance, paying deductibles, and/or paying co-pays (Figures 3-5).

Figure 3 – State ADAP Programs That Pay Private/Marketplace Insurance Premiums, 2023

Photo Source: ADAP Advocacy

Figure 4 – State ADAP Programs That Pay Private/Marketplace Insurance Deductibles, 2023

Photo Source: ADAP Advocacy

Figure 5 – State ADAP Programs That Pay Private/Marketplace Insurance Co-Pays, 2023

Photo Source: ADAP Advocacy

In the recently filed NPR, Florida significantly narrows this framework by limiting the program to medication co-pay and deductible assistance through a limited number of contracted pharmacies.

Eliminating Part A information sharing in an effort to implement artificial administrative barriers:

Another change announced in the NPR is the removal of Ryan White Part A programs from the definition of who can issue a “Notice of Eligibility” (NOE), and the elimination of the provision that allowed Part A NOEs to satisfy ADAP (Part B) eligibility requirements.

For the uninitiated, Part A of the Ryan White Cares Act funds grants to Eligible Metropolitan Areas (EMAs) and Transitional Grant Areas (TGAs)—areas of the country with populations of at least 50,000 people that have seen between 1,000 and 2,000 AIDS diagnoses in the most recent five years.

Florida’s proposed change would require every Part A client to qualify separately for ADAP services, resulting in additional paperwork and administrative costs that increase the risk of lapses in coverage, administrative delays, and missed doses or treatment abandonment. Because of the nature of the HIV virus, missed doses or abandoning treatment can result in the mutation of the virus, creating drug-resistant strains. Lapsed treatment also assures that viral suppression will evaporate, increasing the risk of outbreaks of a multi-drug resistant strain of HIV.

Administrative burdens are a common tool used by public (in this case, the state of Florida) and private (e.g., insurance companies) payers to increase the likelihood that otherwise eligible program applicants will abandon application and/or renewal processes.

For example, in 2021, in an effort to artificially reduce its ADAP enrollment numbers, the state of Texas began requiring enrollees to recertify their eligibility in person. This was when the COVID-19 pandemic was still killing thousands of Americans each day, making this requirement potentially deadly to a patient population at severe risk of developing potentially deadly opportunistic infections, solely to serve the state’s goal of decreasing the number of enrollees to “save money.”

Limiting the types of documents acceptable for income verification:

In addition to these changes, the state of Florida is further creating administrative barriers by limiting the types of documents that can be used to verify income eligibility. This change would limit the documents available for use to W-2s, tax returns, pay stubs, unemployment documents, and Medicaid award letters.

This creates a barrier for gig workers (e.g., DoorDash drivers, Uber drivers, contractors), people paid directly in cash, and others with informal financial support by preventing them from submitting Form 1099s, contracts, or other income documents.

Changing program language to eliminate prioritization criteria, waitlist rules, and notice requirements:

Another change introduced in Florida’s NPR would revise the standard language about all program enrollment and services being subject to the availability of funds to exclude additional language that detailed prioritization criteria, rules related to the creation of a waitlist, or notice to enrollees that their coverage may or will be eliminated should funds be reduced or unavailable.

This essentially means the state can simply cease services without providing enrollees with sufficient notice to seek alternative patient assistance.

What Can Advocates Do?

The AIDS Healthcare Foundation has recommended that individuals and organizations follow the following strategy:

Figure 6 – What You Should Do Right Now

Photo Source: AHF

{Source: AIDS Healthcare Foundation, 2026}

Individuals may also directly contact their legislators using the resources below:

To find your representative in the Florida House of Representatives:

https://www.flhouse.gov/FindYourRepresentative

To find your representative in the Florida Senate:

https://www.flsenate.gov/Senators/Find

This Friday (February 20th) at 9 am ET, advocates can join a HIV Patient Access and Advocacy Strategy Convening, hosted by The AIDS Institute. 

In the meantime, ADAP Advocacy announced this week that it is rescinding its three-year travel ban to the state of Florida. This travel ban applied to ADAP board members, staff, consultants, and scholarship-funded patient advocates and precluded hosting any patient advocacy events, such as Fireside Chats, in Florida.

The severity of potential outcomes for PLWHA in the state of Florida “…warrant[s] our change in strategy,” said ADAP Advocacy CEO Brandon M. Macsata. ADAP Advocacy will continue to monitor this situation and will report any additional information as it becomes available.

*This restriction hasn't appeared in any of the formal notices, despite it initially being floated by the state.

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.

References:

[1] Adamczeski, R. (2026, January 20). Ron DeSantis will have 'blood on his hands' if HIV funding isn't restored, Democratic chair says. Los Angeles, CA: The Advocate: Politics. https://www.advocate.com/politics/florida-desantis-hiv-medication-funding

[2] ADAP Advocacy. (2025). ADAP Directory. Nags Head, NC: ADAP Advocacy. https://adap.directory/directory

[3] Gilead Sciences. (2026). Biktarvy. Foster City, CA: Gilead Sciences: Biktarvy: About Biktarvy. https://www.biktarvy.com/about-biktarvy

[4] Mower, L., Glorioso, A., & Garcia, J. (2026, January 19). DeSantis admin diverted child welfare and medical funds for consultants, ads. Miami, FL: Miami Herald: News: Florida Politics. https://www.miamiherald.com/news/politics-government/state-politics/article313630394.html

[5] National Alliance of State and Territorial AIDS Directors. (2025). 2025 Annual Report. Washington, DC: NASTAD. https://nastad.org/2025-rwhap-part-b-adap-monitoring-report

[6] Shepard, S. (2026, January 21). New Florida AIDS drug rules may leave 15,000 without HIV treatment options, Democrats say. West Palm Beach, FL: CBS 12: News: Local. https://cbs12.com/news/local/floridas-revised-hiv-treatment-eligibility-raises-questions-from-democratic-lawmakers-south-florida-news-ryan-white-aids-drug-assistance-program-adap-reps-lois-frankel-debbie-wasserman-schultz-and-sheila-cherfilusmccormick-zoom-meeting-january-21-2026

Voters Put Guardrails on 340B Program, Also Aiding Reform Efforts to Ebb Abuse

By: Ranier Simons, ADAP Blog Guest Contributor, and Marcus J. Hopkins, ADAP Blog Guest Contributor

Judges aren’t the only ones putting guardrails on the 340B Drug Pricing Program. On November 5th, 2024, voters in the state of California passed Proposition 34 (Prop 34), enacting the Protect Patients Now Act (2024; PPNA) by a margin of 50.9% to 49.1% (California Secretary of State, 2024c). The PPNA, which goes into effect on January 1st, 2025, requires covered entities who receive revenues through the 340B drug pricing program to “…spend at least 98 percent of their net revenues generated in this state through the discount prescription drug program on direct patient care” (CSOS, 2024b).

Photo Source: The Real Deal

The issue of using 340B-related revenues for purposes other than their original intent has been one that has stoked calls for reform, particularly considering ADAP Advocacy’s 2024 report highlighting how 340B-eligible covered entities—particularly hospitals—have seen significant increases in revenue accompanied by significant decreases in at-cost charity care provision. Overall, hospitals receiving 340B revenues saw average revenues increases of 217% after becoming eligible for the 340B Program while decreasing charity care provision as a percentage of annual revenues by an average of 15%. HIV organizations saw revenue increases averaging 2,095% after becoming eligible for the 340B program (Hopkins, Macsata, & Laws, 2024).

The California Chronic Care Coalition's (CCCC) President and CEO, Elizabeth Helms, explained her organization's support of Prop 34 prior to the election to The Sacramento Observer, "We are patient-centric. We care that people are able to access the care that they need, including their medications, seeing physicians. And when we see that not happening, or we start hearing it from the field that (people are) having problems, (people) can’t do this, (people) can’t afford this, (people) can’t get timely care; you know, (people are) having to choose food over medicine or all these other things. Proposition 34 is important. Especially to people who need care, who can’t get it” (Henderson, 2018).

The text of Prop 34 was very specific in its justification for passing the amendment:

...some safety net health care providers have manipulated the program to receive enormous markups on the discounted prescription drugs they receive and then stick taxpayers with the added cost. Instead of using this massive windfall to help patients, the worst offenders have used their fortunes to purchase luxury coastal condominiums, wasted hundreds of millions of dollars on failed political campaigns, put elected politicians on their payrolls, and acquired low-income multifamily housing complexes that are operated as slums (CSOS, 2024b).

Proposition 34 has many layers. It is an attempt to codify the current statewide negotiation of Medi-Cal drug prices in addition to being a roadmap to prevent potentially bad actors from abusing net revenues received from the 340B Program. In 2019, Governor Gavin Newsome issued Executive Order N-01-19, which required the California Department of Health Care Services (DHCS) to migrate all Medi-Cal pharmacy services from managed care (MC) to fee-for-service (FFS) (Dept. of Health Care Services, n.d.). In addition to strengthening the state’s negotiation buying power, the order standardizes pharmacy benefits throughout the entire state, and greatly improves access to Medi-Cal beneficiaries by creating a pharmacy network that includes approximately 94% of the state’s pharmacies (Dept. of Health Care Services, n.d.). Proposition 34 seeks to “permanently authorize the Medi-Cal Rx program so that its expanded patient access and continued access and cost-savings can be continued in perpetuity.”(Secretary of State, 2024). Executive orders are not permanent and can be revoked, legally challenged as being unlawful, or ended by a changing political guard. Codifying the order will ensure it lives even after the Governor is no longer in office.

Proposition 34 strikes against the exploitation of the 340B Program by requiring, what it describes as prescription drug price manipulators, to spend at least 98% of revenues generated from participation in the program on direct patient care. As part of the oversight to enforce this requirement, the entities must submit annual reports detailing their statewide and nationwide gross and net revenues obtained from the 340B Program, as well as details on how the program revenues were spent (Secretary of State, 2024).  Non-compliance results in license revocation and a ban from obtaining operating licenses for ten years. Additionally, tax exempt status is revoked for ten years, and an entity is rendered ineligible for state and local grants and contracts for ten years (Secretary of State, 2024). Moreover the proposition grants several state departments the authority to standardize the specifics of the accounting reporting requirements (Secretary of State, 2024). This ensures that entities cannot obscure their numbers.

The controversy that has surrounded Proposition 34 is due to its very specific definition of ‘prescription price manipulator’. The proposition describes such an entity as one the fulfills all of the following requirements: it utilizes the 340B Program to obtain medication, has spent more than $100 million on non-direct patient care activities during any ten-year period, and is currently or has a history of owning and operating highly dangerous multifamily dwellings (Secretary of State, 2024). Additionally, said entity meets one of the following criteria: has had a license to provide healthcare services, has currently or formerly contracted with the Centers for Medicare and Medicaid Services (CMS) as a Medicare special needs plan, or presently or in the past has had a license to operate as a clinic or a pharmacy”(Secretary of State, 2024). While there are many entities who improperly utilize 340B funding, only one group seems to embody the proposition’s multifaceted assignment of characteristics – AIDS Healthcare Foundation (AHF).

AHF has faced significant scrutiny for its activities over the past three decades, particularly in states where voters are able to vote directly on laws, such as Prop 34. Most recently, AHF has come under fire for its 2017 purchase of the Madison in Los Angeles’ Skid Row for use as part of its venture into providing housing services for lower-income people. A 2023 investigation by The Los Angeles Times reported that tenants:

“…live[d] in squalid conditions with dozens under the threat of eviction. Roaches and bedbugs infest rooms. Electricity, heating and plumbing systems fail. Elevators malfunction. Code enforcement and public health complaints at foundation buildings are more than three times higher than those owned by other Skid Row nonprofits. Meanwhile, the foundation has evicted tenants over debts of just a few hundred dollars, eviction records show, while suing nearly 70 others for back rent in small claims court (Dillon, Smith, & Oreskes, 2023).”

Photo Source: The Los Angeles Times

These incidents, which resulted in a class action suit on behalf of AHF’s tenants being filed in 2020 and settled in September of this year (Wagner, 2024), along with various other lawsuits that AHF has settled over the past six years, provide the examples specifically mentioned in the Prop 34 text, above. AHF, for its part, came out vocally against Prop 34 in language that was included in the CSOS’s Quick Reference Guide:

Prop. 34—The Revenge Initiative. California Apartment Association, representing billionaire corporate landlords, doesn't care about patients. Their sole purpose is silencing AIDS Healthcare Foundation, the sponsor of the rent control initiative. 34 weaponizes the ballot, is a threat to democracy, and opens the door to attacks on any non-profit (CSOS, 2024a).

While Prop 34’s language obliquely seems to target AHF, generally speaking any alleged misuse of 340B revenues in ways that do not directly improve patients’ access to healthcare services and medication is an issue that ADAP Advocacy has reported on for over a decade. While AHF qualifies for the 340B Drug Pricing Program as a HIV healthcare provider, other types of covered entities—providers and pharmacies that qualify to purchase medications at significant discounts, dispense them to outpatients, and receive revenues in the form of rebates for the difference between the purchase price and the list price—including major hospitals and hospital systems, are facing calls to be more forthcoming with information about the amount they receive in 340B revenues and how those revenues are spent.

Summarized ADAP Advocacy's CEO, Brandon M. Macsata, "Matthew 26:52's proverb, 'Live by the sword, die by the sword', best characterizes what happened in California on November 5th. For the last decade, AHF has routinely played Russian roulette with ballot initiatives to advance its interests in California and Ohio, even ones that had nothing to do with healthcare. Ironically, even though their ballot initiative strategy is marked by loss after loss, in the end they got beat at their own game."

It is unclear from the Prop 34 text whether or not the prop’s sponsors intended for other types of covered entities to be subject to the law, as hospitals and other types of covered entities are not required under federal law to report 340B revenues in their annual tax filings. The text of Prop 34 requires any “prescription drug price manipulators” that hold tax exempt status, a pharmacy license, a health care service plan license, or a clinic license to comply with the PPNA. In order to comply with the PPNA, covered entities must submit an annual detailed accounting of both its California statewide and nationwide gross and net 340B revenues for the prior year. If an entity falls out of compliance, they are subject to the following penalties:

(a) Any and all California pharmacy licenses, health care service plan licenses, or clinic licenses held by the prescription drug price manipulator shall be permanently revoked. 

(b) The prescription drug price manipulator shall be prohibited from applying for, or obtaining or possessing, a California pharmacy license, health care service plan license, or clinic license for a period of 10 years.

(c) Any person serving as an owner, chief executive officer, chief financial officer, chief administrative officer, chief operating officer, president, or any other similar position exercising significant influence or control over the prescription drug price manipulator at the time the violation of Section 14124.44 occurred shall be prohibited from serving as an owner, officer, director, or employee of a California licensed pharmacy for a period of 10 years.

(d) The prescription drug price manipulator shall lose, and no longer be eligible for, tax-exempt status in the State of California […] and shall instead be subject to the Revenue and Taxation Code and other state laws as a taxable organization. The prescription drug price manipulator shall be prohibited from reapplying for, or again being granted, tax-exempt status in this state for a period of 10 years.

(e) The prescription drug price manipulator shall be ineligible to receive any new or renewed state or local grants or contracts for a period of 10 years (CSOS, 2024b).

The big question in all of this well be whether or not any of this can—or rather, will—be enforced. While the California proposition system provides voters with great opportunities to directly impact the laws under which they live and work, bring a proposition to the ballot is an expensive exercise that is always funded (and opposed) by large financial interests.

Photo Source: The Sacramento Bee

In addition to opposition by AHF, Prop 34 was opposed by the National Organization for Women, Consumer Watchdog, Coalition for Economic Survival, CA Democratic Parry Renters Council, Dolores Huerta Foundation, Unite HERE Local 11, and the Monterey County Renters United (No on 34, 2024). In the effort of full disclosure, ADAP Advocacy was one of the organizations that came out in favor of Prop 34, as well as 25 other organizations and 12 news organizations (Yes on Prop 34, 2024).

Jen Laws, President and CEO of the Community Access National Network (CANN) reflected, "CANN supported Prop 34 because it aligned with the original intent of the 340B statute – serving patients. 340B revenues should never be used to further political initiatives or programs that leave patients behind with regard to comprehensive care."

The PPNA will, if fully enforced, be one of the broadest and strictest state-level attempts to overhaul and regulate how 340B revenues are used. ADAP Advocacy will continue to monitor the impacts of Prop 34 as it is implemented.

References:

Cadelago, C. (2023, August 30). California proposal would sideline a prolific ballot measure player. Politico: News. https://www.politico.com/news/2023/08/30/california-proposal-ballot-measure-00113475

California Secretary of State. (2024a). Quick Reference Guide, Prop 34. California Secretary of State: California General Election. https://voterguide.sos.ca.gov/quick-reference-guide/34.htm

California Secretary of State. (2024b, November 05). General Election Voter Information Guide - Proposition 34 Text of Proposed Laws. California Secretary of State: California General Election. https://vig.cdn.sos.ca.gov/2024/general/pdf/prop34-text-proposed-laws.pdf

California Secretary of State. (2024c, November 10). State Ballot Measures - Statewide Results. California Secretary of State: California General Election. https://electionresults.sos.ca.gov/returns/ballot-measures

Dillon, L., Smith, D., & Oreskes, B. (2023, November 16). Inside the world's largest AIDS charity's troubled move into homeless housing. Los Angeles Times. https://www.yahoo.com/news/inside-worlds-largest-aids-charitys-110010062.html

Department of Health Care Services. (n.d). Medi-Cal Rx. Retrieved from https://www.dhcs.ca.gov/provgovpart/pharmacy/Pages/Medi-CalRX.aspx

Henderson, Edward (2024, September 18). On Your November Ballot: Prop 34 Aims to Expand Medi-Cal Prescription Drug Funding — With Restrictions. CBM Newswire - The Sacramento Observer. https://sacobserver.com/2024/09/on-your-november-ballot-prop-34-aims-to-expand-medi-cal-prescription-drug-funding-with-restrictions/

Hopkins, M. J., Macsata, B. M., & Laws, J. (2024, July). The 340B Drug Rebate Program and its potential impacts on annual revenues, executive compensation, and charity care provision in eligible covered entities. Nags Head, NC: ADAP Advocacy. https://www.adapadvocacy.org/pdf-docs/2024_ADAP_RW_340B_Project_Asset_6_ExecComp_FInal_Report_06-05-24.pdf

Secretary of State. (2024). Text of Proposed Laws. Retrieved from https://vig.cdn.sos.ca.gov/2024/general/pdf/prop34-text-proposed-laws.pdf

Wagner, D. (2024, September 16). AIDS Healthcare settles. The Brief: News. https://laist.com/brief/news/housing-homelessness/los-angeles-aids-healthcare-foundation-michael-weinstein-madison-hotel-settlement-rent-control-proposition-prop-33

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. 

Despite Trump's Troublesome Policies, HIV Advocacy Must Remain in Motion

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Earlier this year, we highlighted a decade of accomplishment achieved by the ADAP Advocacy Association since the organization's inception in 2007. Unfortunately, there is little time to celebrate because so much uncertainty — and yes, fear — exists over some of the troubling policies being put forth by the Trump Administration, and how they could potentially impact people living with HIV/AIDS. For that very reason, HIV advocacy must remain in motion!

The ADAP Advocacy Association has long contended the Affordable Care Act (ACA) is far from perfect, but it would be a mistake to ignore how the law has expanded coverage for low income and disadvantaged Americans. In fact, according to FactCheck.org nearly 20 million Americans have gained access to health insurance thanks to the ACA. There is no fake news behind that number!

Affordable Care Act Medicaid Expansion; KFF.org

Medicaid expansion — which was authorized by the ACA — had a lot to do with the dramatic decrease in the number of people uninsured in the United States. Many people living with HIV/AIDS benefited from Medicaid expansion, and their ability to access timely, appropriate care and treatment actually saved the taxpayers money. That's not to suggest that other negative, unintended consequences haven't emerged since the ACA's passage — including insurance discriminatory design with extremely high co-payments for anti-retroviral medications, adverse selection limiting access to care, or rising premiums and cost-sharing. There is also no fake news behind these facts, either!

Repeal? Replace? Repair? It is hard to know the future of the current ACA, but the Republican plan...as it currently exists...is bad for people living with HIV/AIDS. There is little debate over that statement. In fact, four Republicans governors — Snyder of Michigan, Kaisch of Ohio, Hutchinson of Arkansas, and Sandoval of Nevada —who actually favor the ACA's repeal have come out against the GOP-sponsored American Health Care Act, as it is known. Why? Because they recognize the important role Medicaid expansion has played for the people living in their respective states.

Ohio Governor John Kasich has voiced concerns about
repealing the Affordable Care Act; The Atlantic 

People living with HIV/AIDS haven't been well-served by the hyper-partisanship that has swept over the nation's capitol in recent years, especially with respect to the ACA. One political party buried its collective head in the sand and ignored the law's flaws, while the other political party obsessed over repealing the law without a viable alternative to replace it. Blame can be placed at the feet of both the Democrats, and the Republicans.

But rather than trying to score political points or rehash political talking points, people living with HIV/AIDS are making their voices heard loud and clear. They are trying to be part of the solution by engaging in HIV advocacy in motion...whether is activism via social media, or the National HIV Call-In Day (which was held on March 21st), or the countless sign-on letters being sent to Congress. It is encouraging that it is happening at the national, state, and local levels.

The ADAP Advocacy Association, for its part, has a robust schedule of events and projects planned for the current year. They include:

• AIDS Drug Assistance Program Regional Summit in Raleigh, North Carolina on April 14th
• 10th Annual Conference - "Unchartered Water: AIDS Drug Assistance Programs in the Age of Trump" in Washington, DC on September 22nd - 23rd
• PASWHA Webinar Series on "Linkages to Care: Promoting Access to Care & Treatment for People Living with HIV/AIDS"

Scholarships are available for people living with HIV/AIDS who wish to participate, so that the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion. The webinar series will include the following topics:

• Wednesday, May 31st – Plugging the Treatment Gap: Navigating Patient Assistance Programs
• Wednesday, June 28th – Housing is Healthcare: Linking Stable Housing & Medication Adherence
• Wednesday, July 26th – Transgender Healthcare: Removing Barriers to Healthy Cultural Expectations
• Wednesday, September 27th – Body & Soul: Combatting the Dual Epidemic of HIV-Infection and Substance Abuse

More information about the ADAP Advocacy Association's sponsored events is available online at http://adapadvocacyassociation.org/events.html.

These activities are designed to raise awareness, offer patient educational programs, and foster greater community collaboration. Each one is enhanced by partnering with various other organizations, such as the AIDS Healthcare Foundation (AHF), Community Access National Network (CANN), North Carolina AIDS Action Network (NCAAN), and the Professional Association of Social Workers in HIV/AIDS (PASWHA). Several other projects are also in the works for the coming year.

If one good thing has come from the Trump Administration's proposed policies, then it is an increasingly energized front by the HIV community.

10 Years of Accomplishment, Advocacy & Access to Care

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

It is hard to believe it is true, but 2017 marks the 10-year anniversary for the ADAP Advocacy Association. What started out as an idea by our founder and co-chair, William "Bill" Arnold, and a small start-up grant from Ramsell Corporation, has bloomed into a national voice for people living with HIV/AIDS who rely on the AIDS Drug Assistance Program (ADAP). Throughout these ten years one thing has remained true, that the voice of people living with HIV/AIDS shall always be at the table and the center of the discussion.

One of our greatest accomplishments was launching the ADAP Directory, which was initially made possible by generous grants from AbbVie, Merck, and Walgreens. The groundbreaking approach provides a one-stop online resource center for the latest ADAP information for better decision-making for HIV/AIDS care, improved quality of HIV/AIDS information, and assistance for advocates and care providers. In 2016, over 21,000 users visited the ADAP Directory. Additionally, last year we added the "ADAP Eligibility Calculator" as a new user-friendly, patient-centric tool — powered by Pill Pack — designed to provide additional information about possible ADAP eligibility.

Years earlier during the ADAP waiting list crisis, we hosted an Emergency ADAP Summit in Fort Lauderdale just as the Florida ADAP was on the verge of kicking nearly 3,000 patients off of the program. The event embodied activism in motion because patients were speaking out against the growing waiting lists. Behind the scenes the former President & CEO of the Heinz Family Philanthropies, Jeffrey Lewis, was bringing together the necessary players to launch the Welvista Solution — which provided life-saving medications to literally thousands of people living with HIV/AIDS on ADAP waiting lists. We were honored to have played a role in making it happen.

That same year, we released Public Service Announcements on ADAPs to raise awareness about ongoing the ADAP waiting list crisis. The 60-second PSA aired over six weeks from February 21, 2011, to April 3, 2011, over 210 media outlets nationwide. The PSAs were produced by Neil Romano of The Romano Group, LLC – who worked on campaigns such as "Just Say No" and "America Responds to AIDS."

2017 is a new year, and with it will undoubtedly come new challenges. There remains much uncertainty over the incoming Trump Administration and its implications for the Affordable Care Act and the Ryan White CARE Act. For now, we are continuing to focus on what has been our stable approach to advocacy: the patients voice! Our 10th Annual Conference — which is slated for September 22-23, 2017 in Washington, DC — is being themed, "Unchartered Water: AIDS Drug Assistance Programs in the Age of Trump." In addition, possible collaborative projects are being planned with the AIDS Healthcare Foundation (AHF), Community Access National Network (CANN), HealthHIV and the Professional Association of Social Workers in HIV & AIDS (PASWHA).

This year, two special education projects are planned to improve access to care among transgender men and women living with HIV/AIDS, as well as linkages to care for incarcerated (and formerly incarcerated) populations. As in years past our Scholarship Fund will ensure that the patients voice remains front and center, and this objective couldn't be achieved without the fund's two chief funders, CANN and Housing Works, as well as the many other supporters.

Access to care has been at the center of our mission, and it will continue to do so. Adherence is key to HIV treatment working, thus promoting a robust AIDS Drug Assistance Program is vital to combatting the disease and ending the epidemic. Though our focus is almost exclusively on ADAPs, we will continue to work with advocates, community, health care, government, patients, pharmaceutical companies, and other stakeholders to raise awareness, offer patient educational program, and foster greater community collaboration.

In closing, we would like to thank our funders because our 10th anniversary couldn't happen without their past and ongoing support. Since 2007, our funders have included: Abbott Laboratories, AbbVie, AIDS Alabama, AIDS Drugs Online, AIDS Healthcare Foundation, Alibi Wilton Manors, American Association for Homecare, Audio Visuals & Computer Services, Bender Consulting Services, Biotechnology Industry Organization, Bristol-Myers Squibb, Broward House, Community (A Walgreens Pharmacy), Community Access National Network, Dab the AIDS Bear Project, DC's Most Fabulous Magazine, Diplomat Specialty Pharmacy, Duane Reade Pharmacy (A Walgreens Pharmacy), EHiM, EMD Serono, Elwyn Specialty Care, Flowers Heritage Foundation, Forthright Strategies, HealthHIV, HMS, Housing Works, Genetech, GettingHired.com, Gilead Sciences, Great Lakes ADA Center, Janssen Therapeutics, Job Accommodation Network, Justin's Cafe, Kellari, Kimptons Hotels & Restaurants, Macsata-Kornegay Group, MedData Services, Merck, MOMS Pharmacy, Morgali Films, Mylan Pharmaceuticals, Napo Pharmaceuticals, Number 9, O.B. Sweet, OraSure Technologies, Patient Access Network Foundation, Patient Advocate Foundation, Pharmaceutical Research and Manufacturers of America, Philadelphia FIGHT, Pill Pack, Public Sector Solutions, Ramsell Corporation, The AIDS Institute, Theratechnologies, Social Security Administration's Ticket-to-Work, Southern AIDS Coalition, Southwest Airlines, Starbucks, SunTrust Bank, Turing Pharmaceuticals, Vertex Pharmaceuticals, ViiV Healthcare, Walgreens, We Movement, Wells Fargo, Women's Institute For A Secure Retirement, and World AIDS Institute.

But most of all, we would like to thank the thousands of individual supporters who joined our organization, attended our educational events, and/or donated to us. We couldn't have reached 10 years without you!

Californication and the Battle Over Drug Pricing

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

POLITICO reported this week that California's controversial Prop 61, entitled the "California Drug Price Relief Act," is likely to get the green light from voters at the ballot box this November, according to a recent poll. Nearly three quarters (73%) of those polled indicated that they support Prop 61, compared to only 13% who are opposed to it -- with approximately 14% of the survey's respondents remain undecided. The ballot initiative appears to have the strongest support among registered Democrats (77%), but also 70% of registered Republicans and 68% of unaffiliated voters.[1]

Photo Source: Moyers & Company

According to Californians for Lower Drug Prices, which is supporting the ballot initiative, (verbatim language from the Yes on Prop 61, Californians for Lower Drug Prices, with major funding by AIDS Healthcare Foundation and California Nurses Association PAC) "The Drug Price Relief Act would require the state of California to negotiate with drug companies for drug prices that are no more than is paid for the same drugs by the U.S. Department of Veterans Affairs (DVA).  Unlike Medicare, the VA negotiates for drug prices on behalf of the nearly 22 million veterans it serves, and pays on average 20-24 percent less for medications than other government agencies, and up to 40 percent less than Medicare Part D.  The Drug Price Relief Act empowers the state, as the healthcare buyer for millions of Californians, to negotiate the same or an even better deal for taxpayers, saving the state billions."[2]

The poll was conducted by Tulchin Research, among 800 likely voters conducted from July 21-24, 2016. According to a Tulchin Research memorandum obtained by the ADAP Advocacy Association:

"The survey finds that nearly three-quarters of voters would vote yes in support of Proposition 61 (73% yes with leaners, 66% without leaners) when presented the measure’s title and summary, including four out of 10 (41%) who say they would definitely vote yes, while just 13% of voters would oppose the measure (12% without leaners) and 14 percent are currently undecided."[3]

Prop 61 has been endorsed by a long list of organizations -- including the AIDS Healthcare Foundation (AHF) and the American Association of Retired Persons (AARP) – California Chapter. To view endorsements, go to http://www.yeson61.com/endorsements/.

But not everyone is behind the ballot initiative. Aside from groups expected to oppose such a measure -- such as the Pharmaceutical Research and Manufacturers of America (PhRMA) -- it is being opposed by some other heavy hitters. Among them; the Veterans of Foreign Wars, the California NAACP, and the California Medical Association. To view opponents to Prop 61, go to http://www.noprop61.com/who.

Interestingly enough, some national and state HIV/AIDS organizations are opposing the ballot initiative; and other organizations -- such as Project Inform and the San Francisco AIDS Foundation -- are staying on the sidelines. The chief complaint against it is...it won't actually save the state any money. In fact, "highly uncertain" is how the California Legislative Analyst’s Office characterized the impact of the ballot initiative, should it pass in November.[4]

The state's analysis found, "Even if the initiative were to result in cost savings to the state, it is unclear whether or not lower prices would be realized for consumers. The initiative does not include any provisions that would lower the cost of prescription drugs for consumers who are increasingly having difficulty accessing treatment, both because employers and insurers are passing on more of the cost to employees and consumers, and because more restrictions to access are being placed on higher-cost drugs."[5]

Summarized Eddie Hamilton, with the ADAP Educational Initiative, "The current convulsed, inconsistent system across the country compounded with the widespread conflicts of interest is hurting access more than any state Proposition could ever do. That is what had created the breeding ground for that ballot initiative."

And for now, voters in California are moving in the direction of the "Yes" forces during this contentious battle in the Golden State! Stay tuned...

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[1] POLITICO, "New poll shows strong support for landmark drug pricing ballot measure,"  August 2, 2016; available online at http://www.politico.com/states/california/story/2016/08/new-ca-poll-shows-strong-support-for-landmark-drug-pricing-ballot-measure-104415#ixzz4IqofRI5q. 
[2] Yes on Prop 61, Californians for Lower Drug Prices, "Californians for Lower Drug Prices Launches TV Ad Campaign," June 7, 2016; available online at http://www.aidshealth.org/#/archives/27268.
[3] Tulchin Research, "California Statewide Survey Shows Strong Support for Proposition 61, the Ballot Measure to Lower Prices on Prescription Drugs," July 28, 2016.
[4] Hemmelgarn, Seth, The Bay Area Reporter, "Prop 61 targets drug prices," August 25, 2016; available online at http://www.ebar.com/news/article.php?sec=news&article=71839. 
[45 Hemmelgarn, Seth, The Bay Area Reporter, "Prop 61 targets drug prices," August 25, 2016; available online at http://www.ebar.com/news/article.php?sec=news&article=71839. 

Healthcare is Hostage to Rx Pricing

By: Michael Weinstein, President, AIDS Healthcare Foundation

The impossible has happened. Harvoni, a pill that cures Hepatitis C made by Gilead, is selling for $1044 per pill. Decades ago we were outraged at the high price of AZT which was the first anti-retroviral HIV medication to come to market. Now the price of drugs threatens the long term viability of the entire U.S. healthcare system.

Gilead did not discover Harvoni. It bought the primary compound from a company named Pharmasset for $11 billion. That money came almost entirely from huge profits made by Gilead from the sale of grossly over-priced HIV medications. Pharmasset had planned to charge $36,000 for their drug. But, Gilead was not satisfied with that price and decided to push the envelope all the way up to $94,000 for a three month cure for Hepatitis C. During the same year, John Martin the CEO of Gilead, had total compensation of $206 million.

Michael Weinstein, AHF President, leading a protest.

Anger over drug prices has made this the number one healthcare issue by far among the American people. Presidential candidates Hillary Clinton, Bernie Sanders, and Marco Rubio are condemning Pharma on the campaign trail. Senators Charles Grassley and Ron Wyden are denouncing Gilead and other companies and conducting investigations. Yet, not a single piece of significant legislation is likely to be passed at the national or local level. A simple bill that would have required a little more transparency by drug companies was squashed twice in the last year in the dark blue state of California. Pharma's contributions to candidates on both sides of the aisle combined with vast lobbying budgets make passing legislation impossible.

Citizen ballot initiatives are one of the few avenues available to start to change the system. In fact, ballot initiatives were created to allow citizens to directly enact legislation when their elected officials refuse to act. Which brings us to the California and Ohio Drug Drug Relief Acts that will appear on their respective ballots in November. Pharma is so threatened by these initiatives that they have already contributed $40 million to defeat it in California and are trying every legal trick in the book to keep it off the Ohio ballot.

Pharma is working very hard to try to confuse the issue and pick apart the initiative because polling shows that 78% of California voters would support the initiative. First, to be clear this initiative is only a start to reining in drug prices. It is a very simple concept. The state will pay no more than the Veterans Administration for any drug. Critics, many of whom are directly funded by Pharma, say that the initiative can't be implemented and want us to address every hypothetical implementation issue. That is not our job. That will be the state's job after the initiative passes.

You don't have to believe us about how important these initiatives are in giving voice to the anger over drug prices. Here is what PharmExec.com had to say on December 8, 2015:

"If the voters of California approve this proposition it would establish an incredibly deep, mandatory discount - in essence a "price control" - for the public purchase of prescription drugs in American's largest state. Such an action would not doubt cause an immediate demand for the same VA discount rate to be made available to other states, the federal government, and likely private entities as well. In short, adoption of VA pricing by the State of California would be a pricing disaster for the entire U.S. drug industry."

The California and Ohio Drug Price Relief initiatives can be a catalyst for a movement to stop the rampant greed of drug companies with your support. Please don't be distracted by all the dust the industry will try to throw up to try to divert attention from the real issue - an out-of-control system that is victimizing our country.

Editor's Note: This blog was submitted in response to our previous blog, "Is Ohio the Frontline in the War on Rising Drug Prices?"

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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. 

Is Ohio the Frontline in the War on Rising Drug Prices?

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Ohio, which is the 7th most populous state in the United States, is quickly shaping up to be the battleground over the rising cost of prescription drugs. The Ohio Drug Price Relief Act is a voter initiated statute spearheaded by the Ohioans for Fair Drug Prices and the AIDS Healthcare Foundation (AHF). The ballot initiative attempts to bring state prescription drug costs -- such as medications covered under the AIDS Drug Assistance Program (ADAP) -- in the Buckeye State in line with the lowest price made available to the U.S. Department of Veterans Affairs.

If the Ohio Secretary of State's Office certifies the signatures -- in which 91,677 valid signatures of registered voters are needed -- then the next step in the process would be the Ohio General Assembly taking up the legislative measure. If state lawmakers failed to approve the legislation within four months, then the petitioners could attempt to place the initiative on a statewide ballot for referendum.

According to Ballotpedia:

“The Act would enact Section 194.01 of the Ohio Revised Code to require that notwithstanding any other provision of law and in so far as permissible under federal law, the State of Ohio shall not enter into any agreement for the purchase of prescription drugs or agree to pay, directly or indirectly, for prescription drugs, including where the state is the ultimate payer, unless the net cost is the same or less than the lowest price paid for the same drug by the U.S. Department of Veterans Affairs."[1]

Among other provisions, the Act also:

• Sets forth the title of the Act as "The Ohio Drug Price Relief Act."
• Sets forth Findings and Declarations and Purposes and Intent of the Act.
• Sets forth factors in determining "net cost."
• Authorizes state departments, agencies and other state entities to adopt administrative rules to implement the provisions of the Act.
• Provide that the Act shall liberally construed to effectuate its purpose.
• Provide that if any provision of the Act is held to be invalid, the remaining provisions shall remain in effect.
• Provide that if the Act is challenged in court, it shall be defended by the Attorney General.
• Declare that the committee of individuals responsible for circulation of the petition ("the proponents") have a direct and personal stake in defending the Act and any one or more of them may do so in court if challenged. Provide that the proponents shall be indemnified by the state for their reasonable attorney's fees and expenses in defending against a legal challenge to the Act. Provide that the proponents shall be jointly and severally liable to pay a civil fine of $10,000 to the state if the Act or any of its provisions are held by a court to be unenforceable, but shall have no other personal liability.
• Provide that in the event that the Act and another law are adopted by the voters at the same election and contain conflicting provisions and the Act received less votes, the non-conflicting provisions of the Act shall take effect.
• Require the General Assembly to enact any additional laws and the Governor to take any additional actions required to promptly implement the Act.[2]

The fight over the ballot initiative has pitted familiar foes against one another, with AHF leading the charge in favor of it, and the Pharmaceutical Research and Manufacturers of America (PhRMA) -- which is the pharmaceutical industry trade association -- trying to squash the measure. The main criticism of the measure is the lack of specifics, including over how it would be enforced.

Upon announcing that the signatures had been submitted to the Ohio Secretary of State, said AHF's president Michael Weinstein, “While we’ve seen ample evidence that there is seemingly no limit to the corporate greed of pharmaceutical companies, we also know that Americans are tired of feeling afraid every time they go to the doctor or it’s time to get a prescription filled. Astronomical prescription drug prices hurt everyone—except the drug makers’ bottom lines. This has got to stop.”[3]

There remains considerable uncertainty over the outcome of the petition effort, as well as what lies ahead with this ongoing debate in Ohio.

“As I had testified to the Ohio Ballot Board, this well-intentioned but sloppily written ballot measure will have no real effect on drug prices due to trade secrets and lack of a verifiable reference source," argued long-time Ohio resident Eddie Hamilton, Director of the ADAP Educational Initiative. "What it will guarantee is lawsuits whose legal fees will be borne by Ohio taxpayers."

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[1] Ohio Secretary of State,"2015-07-21 petition," July 21, 2015; Last viewed online at http://www.sos.state.oh.us/sos/upload/ballotboard/2015/2015-07-21-petition.pdf. 

[2] Ohio Secretary of State,"2015-07-21 petition," July 21, 2015; Last viewed online at http://www.sos.state.oh.us/sos/upload/ballotboard/2015/2015-07-21-petition.pdf. 

[3] BusinessWire, "AHF: Advocates Submit 171,205 Signatures for 2016 Drug Pricing Ballot Measure in Ohio," December 22, 2015. Last viewed online at http://www.businesswire.com/news/home/20151222006046/en.

Florida Solution: Prescription Freedom Act of 2016

By: David W. Poole, Director of Legislative Affairs, Southern Bureau, AIDS Healthcare Foundation

Mandate, Mitigate, and Manage, perhaps the 3 M’s are the most overused verbs tossed around regularly and often throughout our vast and complex healthcare systems, all in the spirit of optimal outcomes for the patient, right?  Perhaps some of the time. Hopefully patient outcomes are core to all parts of our healthcare universe – which includes hospitals, pharmacies/specialty pharmacies, outpatient surgery centers, home health care,  rehabilitation centers, manufacturers, insurers, wholesalers, and the list goes on and on. Patient outcome language was certainly integrated into the Patient Protection and Affordable Care Act, “PPACA” or the often shortened “ACA.” And the Ryan White legislation throughout its now 25 year history has long since included patient health outcomes as an expectation for grantees managing this very important safety net for person living with HIV disease.

Photo Source: optimistically pessimistic

But what about the “C” word, CHOICE or the “F” word, FREEDOM. Choice and the freedom to choose should be at the real heart of our continuum of care – choice or options that facilitate optimal health care outcomes. And if you have optimal health outcomes shouldn’t the economic benefits follow. Choice is the enemy of barriers to access (which can include the 3 M’s),  both purposeful and unintentional. Choice and freedom are the best friends to individualism – what works for one patient doesn’t work for the next patient, thus having choice and the freedom to choose what works - serves the patient and all health care stakeholders in the best possible way.

You may be surprised to learn that your health care systems deprive you of the freedom to choose the option that serves you best and none is more glaring than many insurer mandated mail order policies. These policies can take many different forms with nuances too numerous to cite; however, two lawmakers in Florida have filed legislation for 2016 that will hopefully reverse this trend with persons living with HIV, Epilepsy, Diabetes and Hypertension. Senator Rene Garcia (R-Hialeah) and Representative Debbie Mayfield (R-Vero Beach) have filed Senate Bill 780 and House Bill 583, "The Prescription Freedom Act." These bills simply provide for patient choice of receiving their medications through a brick and mortar pharmacy or a mail order program – the insurer must not mandate that a patient access their medications from only one or the other and there cannot be financial advantage or leverage assigned to one over the other for the patient or for the insurer. Let freedom ring in health care choices and may options be abundant!


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Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

When will Washington come to the Rescue?

When President Barack Obama signed into law the Fiscal-Year 2011 appropriations law (H.R.1473), many programs didn't share the modest success achieved with the small funding increase for the AIDS Drug Assistance Programs ("ADAPs"). The law provides $885 million for ADAP. This is $25 million more than was obligated in FY10, after a $25 million transfer added supplemental funds to address waiting lists. The bill provides $8 million more than H.R.1 - which was the House-passed version. Whereas the ADAP Advocacy Association (aaa+) applauded the President and Congress for the small increase - especially since many other safety-net programs were cut or level-funded - it begs the question: How satisfied should ADAP stakeholders be with the result?

Yes, clearly we're grateful for the additional $48 million because it will alleviate the ongoing ADAP crisis, albeit temporarily. It was a grassroots victory more than a demonstration of leadership by the national HIV/AIDS organizations (including this one). But more needs to be done! More voices need to be heard! More people living with HIV/AIDS - especially those patients being directly impacted by the ADAP waiting lists - need to get involved!

At the time this blog is published, there are 7,885 people living with HIV/AIDS on ADAP waiting lists in 11 states. Among them, Arkansas with 56 people; Florida with 3,807 people; Georgia with 1,343 people; Idaho with 10 people; Louisiana with 894 people; Montana with 24 people; North Carolina with 178 people; Ohio with 341 people; South Carolina with 612 people; Virginia with 616 people; and Wyoming with 4 people. And that doesn't even include the "invisible waiting lists that stretch into the thousands of patients adversely impacted by other cost containment strategies.

Failure is NOT an option because lives hang in the balance.

In response, aaa+ – together with its Lead Sponsor AIDS Healthcare Foundation (“AHF”) and in coordination with the Community Access National Network (CANN) and Housing Works – is hosting its 2011 Annual Conference as an AIDS Drug Assistance Program Summit. This year’s conference theme is “ADAPs in Crisis: When will Washington come to the rescue,” which aims to assemble ADAP stakeholders from all of the various constituency groups – including patients, advocates, service providers, health care providers, pharmaceutical companies, allied health professionals, specialty pharmacies and others.

ADAPs are in crisis. The purpose is to identify key action steps to secure additional federal appropriations, programmatic reforms, and available public and private resources to alleviate the ongoing cost-containment strategies that are putting thousands of people living with HIV/AIDS on ADAP wait lists or program disenrollment.

Faced with the “Perfect Storm” that is being fueled by high unemployment, record number of uninsured, state budgetary cutbacks, high cost of medications and inadequate federal funding, there are a historic number of people being denied access to treatment. Without intervention from either the executive or legislative branch, several thousand people living with HIV/AIDS will be at risk of developing Opportunistic Infections (“OIs”), and thousands of others who are HIV-negative will be at greater risk of contracting the virus because their HIV-positive counterparts are more infectious when not taking Highly Active Anti-Retroviral Therapy (“HAART”). The conference provides an excellent opportunity to demonstrate the proven Return on Investment (“ROI”) of ADAPs.

To learn more, please visit http://www.adapadvocacyassociation.org/events.html.