Thursday, September 14, 2017

Kaiser Family Foundation Publishes Fact Sheet on AIDS Drug Assistance Programs (ADAPs)

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

The Kaiser Family Foundation (KFF) recently published an excellent Fact Sheet on the AIDS Drug Assistance Programs (ADAPs), which are authorized under the Ryan White CARE Act. ADAP provides medications for the treatment of HIV disease for people who are uninsured, or under-insured. The ADAP Advocacy Association commends KFF for making this important educational tool available.

Download the KFF Fact Sheet.

The KFF Fact Sheet is broad, in that it provides relevant background information about ADAP, as well as budgetary summaries, drug formularies, and program expenditure breakdowns. It also highlights information on eligibility requirements, client demographical data, cost containment measures, drug purchasing models, and pertinent information related to Medicare Part D. It serves as a useful tool, especially for advocates trying to educate lawmakers at the federal, state, and local levels.

Did you know that ADAPs are not entitlement program?[1]

Did you know that State funding only accounted for 6% of the overall ADAP budget?[2]

Did you know that the average amount spent on drug purchases and co-payments was $8,663?[3]

Did you know that 257,396 people were enrolled in ADAPs in CY 2015, ranging from 140 in Wyoming to more than 35,000 in California?[4]

Did you know that not all State ADAPs received rebates from drug companies?[5]

These interesting facts, along with others can be viewed online at http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.

Profile of ADAP Clients, 2015.
Source: Kaiser Family Foundation




















The National Alliance of State & Territorial AIDS Directors (NASTAD) released its 2017 National ADAP Monitoring Project Annual Report earlier this year, which tracked state-by-state programmatic changes, emerging trends, and latest available data on the number of clients served, expenditures on prescription drugs, among other things. The Fact Sheet on the AIDS Drug Assistance Programs (ADAPs) published by KFF certainly complements the comprehensive analysis done by NASTAD on the program, annually.

Of particular interest to the ADAP Advocacy Association  as well as many ADAP stakeholders  is the overview on the drug formularies provided in the KFF Fact Sheet. These drug formularies are the foundation by which states mold their strategies to promote access to care and treatment. According to the KFF Fact Sheet, some key points of interest include:[6]
  • Six (6) states had an open formulary
  • All states offered all of the drugs identified in the “recommended regimens” in the nation’s HIV treatment guidelines.
  • Of the 45 ARVs currently available (including multi-class combination products and generics), ADAP formularies covered between a low of 37 drugs in Arkansas to all 45 in 27 states.
  • In addition to ARVs, many ADAPs provide access to drugs to treat opportunistic infections and HIV co-infection (e.g. treatment for hepatitis).
The importance of state drug formularies cannot be understated!

Dating back to the inception of this organization ten years ago, we have routinely sounded a cautionary alarm that the ADAP waiting lists (which were officially eliminated several years ago) are only the “tip-of-the-iceberg” because other cost containment measures restrict access to care and treatment. Among them, restrictive drug formularies. By limiting the treatment regiments available to people living with HIV/AIDS, states are indeed restricting access to care and treatment. These restrictions can also impact treating other chronic conditions associated with the disease, such as lipodystrophy or diarrhea.

Concerns over restricted state drug formularies was charactered as follows by Eddie Hamilton, Founder of the ADAP Educational Initiative: "The increased cost or additional effort of restricted formularies are a barrier for ADAP clients and may cause them to abandon the prescription which their doctor has written for a medically necessary reason. Many of the excluded medications are to combat side effects and co-morbidities caused by the primary antiretroviral regimens. These restrictions will continue to compromise their health and will lead to costly complications such as hospitalizations, lower medication adherence and overall higher healthcare costs."

To be fair, State ADAPs are often forced to face the harsh reality of prioritizing limited resources, especially since not all of them receive state matching funds or pharmaceutical rebate dollars. Also to NASTAD's credit, they make available another great resource, specific to ADAP drug formularies. Download the 2016 ADAP Formulary Database.

To learn more about the KFF Fact Sheet on AIDS Drug Assistance Programs, or other HIV-specific information and resources offered by the Kaiser Family Foundation, visit http://www.kff.org/graphics/hivaids/.
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[1] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[2] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[3] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[4] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[5] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[6] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.

Thursday, September 7, 2017

National Standards of Care for TGIQ Health

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

Earlier this year, several important resources were made available by the ADAP Advocacy Association to promote better access to care for transgender men & women living with HIV/AIDS. One of the collaborative partners in that effort was RAD Remedy, which connects trans, gender non-conforming, intersex, and queer folks to accurate, safe, respectful, and comprehensive care in order to improve individual and community health. Now, RAD Remedy has published a "uniquely grassroots" document to establish clear guidelines for providers serving these underserved communities.

The National Standards of Care for TGIQ Health includes community-driven best practices for providers to meet and can be used by patients and providers alike to advocate for improvements in forms, systems, and practices. Branded as a "community-driven understanding of competent care for trans, gender non-conforming, intersex, and queer individuals," it lays down the groundwork to provide culturally and linguistically appropriate services (CLAS).

National Standards of Care for TGIQ Health
National Standards of Care for TGIQ Health
In these groundbreaking standards, RAD Remedy puts the CLAS standards in action by outlining key components of culturally competent care and treatment for trans, gender non-conforming, intersex, and queer individuals. They encompass regulatory actions, paperwork, office practices, human resources, marketing, and community engagement.[1]

Upon releasing the new national standards, Riley Johnson, RAD Remedy's executive director, summarized: "This uniquely grassroots document is an open opportunity for providers and hospital systems nationwide to become a positive presence in the lives of TGIQ folks. We look forward to honing forms, systems, and practices which directly impact the health and welfare of our communities."

This is not the first initiative by RAD Remedy to address the significant health disparities and care barriers faced by these communities. In June 2015, RAD Remedy launched the Referral Aggregator Database, a review and referral database that, for the first time, empowered TGIQ people to share reviews and experiences, providing comprehensive information to the community and feedback for providers. The database now has over 4000 providers nationwide and sees an average of 6000 unique visitors per month.

Download the National Standards of Care for TGIQ Health.

For more information, please visit RAD Remedy at RADremedy.org or email at info@radremedy.org.

Related resources:

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[1] Colin, E., Hennessy, R,, Johnson, R., Lowden, R., and Sloane, S; (2017) National Standards of Care for TGIQ Health; RAD Remedy. Retrieved from http://static.radremedy.org/guides/RAD-Remedy-2017-Standards-of-Care-Color.pdf.
[2] Johnson, R.; (2017, August 28) National Standards of Care for TGIQ Health to Help Providers Improve Services; RAD Remedy.