User:Mjhopkins81/ADAP Advocacy

ADAP Advocacy is a national 501(c)(3) non-profit organization based in Washington, D.C., that is dedicated to promoting and enhancing the  AIDS Drug Assistance Programs (ADAPs) and improving access to care and treatment for  Persons Living with HIV/AIDS (PLWHA) in the United States and the U.S. Territories.

History
ADAP Advocacy (formerly the ADAP Advocacy Association, or aaa+) began as an organizing committee in 2007 comprised of advocates, community leaders, students, medical specialists, and ADAP recipients in response to the then long-standing waiting list crisis facing the Ryan White HIV/AIDS Program (RWHAP), commonly known as the ADAP Crisis. The ADAP Crisis resulted in tens of thousands of Persons Living with HIV/AIDS (PLWHA) being unable to access life-saving medications to treat their HIV across the United States, peaking in September 2011 with 9,298 individuals on ADAP waiting lists.

Throughout most of the 2000s and early 2010s, state ADAPs were forced to place financially eligible PLWHA on waiting lists to receive financial assistance to afford life-saving medications to treat HIV. These waiting lists were largely the result of insufficient federal funding to keep up with the demand for ADAP services by new potential patients through the congressional appropriations process through which state ADAPs are funded.

ADAP Advocacy, in collaboration with the AIDS Healthcare Foundation, Community Access National Network (CANN), and Housing Works, pushed the introduction of federal legislation to re-appropriate funding to State AIDS Drug Assistance Programs. The legislation, S.3401, introduced by former Senator Richard Burr, proposed using unobligated Stimulus dollars to address AIDS Drug Assistance Program waiting lists and other cost containment measures impacting people living with HIV/AIDS.

The organization hosted an Emergency Summit in Florida, which was the epicenter of the beginning of the ADAP Crisis, culminating in advocates sending a letter to then President Barack Obama demanding action. The Summit also paved the way for significant concessions from industry partners to help alleviate fiscal pressures on ADAPs.

During the ADAP Crisis that landed thousands of PLWHA living in the United States across 13 states on ADAP waiting lists for their life-saving medications, ADAP Advocacy published a Congressional Scorecard evaluating Members of Congress on their commitment to fighting HIV/AIDS. The scorecard was discontinued in 2014.

ADAP Directory
On August 14th, 2014, ADAP Advocacy announced the launch of the AIDS Drug Assistance Program Directory (a.k.a., the ADAP Directory), a website that allows users to find information about each of the 60 state and territorial ADAPs, including:


 * Eligibility criteria;
 * Application instructions;
 * Full-Pay formulary coverage;
 * If the program covers curative Hepatitis C Direct-Acting Antivirals;
 * If the program covers newer long-acting injectable antiretroviral medications, and;
 * Contact information for each program

While other organizations, including the National Alliance of State and Territorial AIDS Directors, had created other ADAP information databases, those tools had generally been developed with state- and program-level administrative staff persons in mind. The development and release of the ADAP Directory represented the first time that a comprehensive patient-centric database of information was made available.

Advocacy Work
While ADAP Advocacy primarily focuses on issues related specifically to state ADAPs the federal appropriations associated with them, their work has also extended to into other issues related to access to HIV care and treatment, and public health, including:


 * 340B Drug Pricing Program

The 340B Drug Pricing Program is U.S. federal program created in 1992 that requires drug manufacturers to provide outpatient drugs to eligible health care organizations and covered entities at significantly reduced prices. Those covered entities then receive the difference between the reduced prices and the list prices for 340B eligible drugs in the form of rebates that count as revenue.

ADAP Advocacy has long advocated for changes to the 340B program in order to address what many patients, advocates, and drug manufacturers deem abuses by 340B covered entities.

In November 2022, ADAP Advocacy formed the Ryan White Grantee 340B Patient Advisory Committee in order to address gaps in knowledge and awareness among patients, advocates, providers, organizations, and industry partners about the 340B Program. The advisory committee first convened in January 2023 and meets quarterly.

In addition to the advisory committee, research conducted by the ADAP Advocacy found that hospitals who were eligible for 340B rebates saw significant increases in revenues and CEO compensation while simultaneously decreasing the amount of charity care they provided to patients.


 * Counterfeit prescription drugs

ADAP Advocacy is dedicated to raising awareness of counterfeit prescription medications. Brandon Macsata, CEO of ADAP Advocacy, uses both his personal experience of importing potentially counterfeit HIV medications through a Canadian online pharmacy in 2002 and scientific data from federal agencies, including the Centers for Disease Control and Prevention (CDC), and drug manufacturers to inform patients of the dangers related to counterfeit medications.

ADAP Advocacy has developed public service announcements (PSAs), blog posts, op-eds, and interviews with press outlets in an effort educate patients about the risks of and how to identify counterfeit medications.

In addition to its own work, ADAP Advocacy has partnered with the Partnership for Safe Medicines (PSM), a public health group composed of more than 45 non-profit organizations, to address issues related to counterfeit medications.

ADAP Advocacy's other advocacy work has included:


 * Prescription drug importation
 * Affordable Care Act’s impact on Ryan White CARE Act programs
 * Medicare-related issues
 * HIV/AIDS clinical care guidelines
 * COVID-19
 * Pre-Exposure Prophylaxis (PrEP) for the prevention of HIV transmission
 * HIV care for transgender populations
 * HIV care for incarcerated populations
 * Long-Acting Injectable (LAI) medications for the treatment of HIV and HIV-related conditions