NASTAD Releases Updated 2019 ADAP Formulary Database

By: Tim Horn, Director, Medication Access and Pricing, NASTAD

The National Alliance of State & Territorial AIDS Directors ("NASTAD") has released an updated 2019 Online AIDS Drug Assistance Program ("ADAP") Formulary Database ("the Database"), which may be accessed via the accompanying User’s Guide. The Database provides an online, searchable, publicly available resource detailing state-by-state ADAP coverage of medications both individually and by drug class including HIV antiretroviral (ARV) treatments, “A1” Opportunistic Infections (A1 "OI") medications, treatments for hepatitis B and C, mental health and substance use treatment medications, and various vaccines and laboratory tests and includes ADAP formulary coverage for all 50 states, the District of Columbia, Guam, Puerto Rico, and the U.S. Virgin Islands as of December 31, 2018.

 Key findings from the updated 2019 ADAP Formulary Database include:

• 11 ADAPs have “open formularies” in which all FDA-approved medications are included, excluding designated exceptions
• 42 ADAPs cover one or more hepatitis B treatment medication
• 41 ADAPs cover one or more hepatitis C treatment medication
• 39 ADAPs cover one or more of the curative direct acting antiviral ("DAA") hepatitis C ("HCV") treatment medications
• 27 cover daclatasvir (Daklinza)
• 35 cover elbasvir and grazoprevir (Zepatier)
• 36 cover glecaprevir and pibrentasvir (Mavyret)
• 33 cover ledipasvir and sofosbuvir (Harvoni)
• 30 cover sofosbuvir (Sovaldi)
• 31 cover sofosbuvir, velpatasvir (Epclusa)
• 22 cover sofosbuvir, velpatasvir, and voxilaprevir (Vosevi)
• 48 ADAPs cover one or more of the most frequently prescribed mental health treatment medications
• 30 ADAPs cover one or more substance use treatment medication

NASTAD thanks state ADAP coordinators who provided the important data that comprises the ADAP Formulary Database. Questions regarding the Database may be directed to Amanda Bowes, Manager, Health Care Access.

Simplify the Search for Financial Assistance with FundFinder

By: Ayesha Azam, Senior Director of Medical Affairs, Patient Access Network (PAN) Foundation

We often hear that the road to financial assistance is difficult to navigate. Thousands of people living with life-threatening, chronic and rare diseases depend on financial assistance from charitable foundations to start and stay on treatment. These foundations provide a much-needed safety net for people—including those living with Hepatitis C and HIV/AIDS.

Until recently, people looking for charitable assistance had to manually monitor the status of disease funds across multiple organizations to find an available program. This placed an additional burden on patients, their families and healthcare teams.

To ease this burden, my colleagues at the Patient Access Network (PAN) Foundation developed FundFinder, a web-based app that streamlines the search for financial assistance by instantly notifying users when a program opens.

In addition to the PAN Foundation, FundFinder tracks information on program availability from the websites of seven other charitable foundations: CancerCare, Good Days, HealthWell, Leukemia and Lymphoma Society, Patient Advocate Foundation, Patient Services, Inc. and The Assistance Fund. The app is updated hourly to provide the most up-to-date information.

Users can access the free app from any web browser, tablet or smartphone by visiting fundfinder.panfoundation.org. After creating an account, users may subscribe to email or text message notifications and select specific disease funds to follow. When a followed fund opens, users will receive an alert indicating which foundation has available funding.

At PAN, we understand that a diagnosis often puts priorities in perspective. FundFinder helps simplify the search for financial assistance so patients can spend more time focusing on their health and wellbeing. I invite you to join the 4,500 FundFinder users who are saving time for what matters most. Sign up for FundFinder today.




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.

AIDS Drug Assistance Program Advisory Council Invites POZ Advocates to the Table

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

Earlier this month the ADAP Advocacy Association announced that is was soliciting applications from HIV-positive advocates interested in serving on its newly-minted AIDS Drug Assistance Program Advisory Council (hereafter referred to as the "Council"). Our Council will solicit consumer input on improving access to timely, appropriate care and treatment for people living with HIV/AIDS under the AIDS Drug Assistance Program (ADAP).

Our Council, generally speaking, is charged with discussing policy and program issues confronting ADAP consumers, such the ongoing public financing of the Ryan White CARE Act and the delivery of its services throughout the HIV care continuum. Its main function will be advising the organization's board of directors on ADAP-related matters from the consumer perspective on these matters.

Under the leadership of the Valley AIDS Information Network's President & CEO, Robert "Bob" Skinner, our Council will ensure "that the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion." Bob has been active in his advocacy for over thirty years. In 2013, Bob was named one of the "100 Unsung Heroes" by POZ Magazine. He has also been an active member of the ADAP Advocacy Association, attending almost all of our previous Annual ADAP Conferences in Washington, DC. More recently, Bob was honored by the Community Access National Network (CANN) as the recipient of its inaugural Gary R. Rose Advocacy Scholarship.

Robert Skinner; Photo Source: Gazette Times

Additionally, two advocates – LaWanda Wilkerson from Henderson, North Carolina, and Noel Chavez-Guizar from Denver, Colorado – will serve as the Council's co-vice chairs. Both are emerging advocacy leaders in their respective states.

Some of the possible issues that may come before the Council for discussion included ADAP drug formularies and the need for greater transparency, ADAP structural deficits, ADAP privacy breaches (as seen in California and Ohio), 340B drug pricing program reform, regional access and health disparities, as well as ways to improve outcomes. The Trump Administration's recent call to end the AIDS epidemic by 2030 is also important, considering its past record on HIV/AIDS over the last two years.

HIV-positive advocates interested in submitting an application should do so online at https://www.surveymonkey.com/r/3CD98ZX.

Reflections from an HIV Advocate's Journey: Lisa Johnson-Lett

By: Lisa Johnson-Lett, Treatment Adherence Specialist & Peer Educator, AIDS Alabama

Finding voice in a world paralyzed yet infiltrated by noise of polluted air there is nothing sound or authentic! When talking about advocacy we are constantly developing voice to rid pollutants speaking to communities in First People Language; redeveloping valued principles like, Denver (The Denver Principles), while speaking truths and giving power to words.

All my life I’ve been trying to find my voice. Afraid of mankind, having lost trust because of mistrust in people. Diagnosed in 1995 while enlisted in the U.S. Army (fighting for county), I did not fight for myself. I was twenty years old, and I felt my life was in ruins.

My childhood sweetheart who I trusted assisted in my sero-conversion. I am not angry, never was (it’s not my personality) but I experienced much sadness that turned into depression because people were not using first people language. I developed internal and external stigma. I became my own worst enemy, yet I had to figure out relationships and where I stood as a person now living with HIV. I feel my traumatic experiences in life developed a pathway for the HIV diagnosis.

There are a lot of talk about communities that are targeted and high risks. Born into a world of substance use, both parents affiliated with Heroine and LSD, I became another statistic. African American, infant, female rushed to Mary Immaculate Catholic Hospital in Queens, New York fighting for life. Child in critical condition due to stab wounds in forehead, right side of face, left breast. And cuts on the inside of the uterus. My mother the one who birthed me by nature tried to kill me because the disease of addiction took her mind. I was crying too much (I was hungry). She thought I was Satin, and she tried to kill me. She wanted me to shut up and stop crying. At the age of 14 months I was trying to find voice.

Through my tears and crying aloud, I still serve my HIV community and try and find voice! One of the most pivotal moments in my HIV journey was the “Church”.  Over 20 years, I have been living with HIV and I had attended a church about 17 years into my diagnosis. At that time I was heavily into church and religion and undergoing the Christian values. Very attentive and consistent I vowed to pay my tithes and sit under leadership, yet no one in the congregation knew my diagnostic status. I pondered. I mediated. I remember the scripture, “If there is anyone sick among you bring them to the elders.”

I had been sick for a long time: living in denial, not wanting to take medicine (hoping God would somehow heal me, like he healed the woman with the issue of Blood). I am the woman and the issue of my blood is HIV! I couldn’t stand it any longer. I had attended 3 years of this church! The pastor is my elder and he needs to know!

I questioned myself; how can I sit under his leadership, listening Sunday after Sunday about the Word of God and he doesn’t know my status. I am trusting in Man to deliver sermon over my life and I can’t trust him with the secret of my diagnosis? I got up early one morning and drove 45 minutes to Pastor's house. It was about 8 a.m. when I arrived, and I told Pastor and First Lady (his wife) simultaneously. They immediately embraced me. At that time, I was the Church Secretary and the weekly announcer where I acknowledge birthdays and upcoming events from the pulpit using the microphone (discovering voice). The very next Sunday, different color pieces of masking tape were placed on each Mic. When I came in the doors of the church. I was immediately told by a brother that I will always speak from the mic with the green masking tape. I remained in the setting until 2014 and never looked back.

Today I don’t have to worry about the green masking tape or the mic. It was the worst of times that has molded me to my happy place of today. When things are not going right, I get tired quick. I don’t have time for mess and ignorance. I aim to educate and promote growth through empowerment of change. Advocacy transcends the world. Advocacy is needed at all levels. It took a long time for me to understand that I had a voice to the development of voice and here I am today shaping voice to help someone along the way. To create a hub of understanding that we are not alone and voices carry the message. Advocates give the whispers a voice!

Now, I am the voice. I am the voice to Survivors. I sit at tables because I don’t want to be on the menu. I want to be a part of the decision making process. I have a vested interest in GIPA - the Greater involvement of People Living with HIV. I am a firm believer of the art of reciprocation. I give, yet I receive basking in the glory of happiness and watch people prosper and have growth spurts. It’s a good feeling to have a mentor and be available to mentor someone else. This is paying it forward through advocacy.

Working for the agency, AIDS Alabama, has given me the strength to push pass my pain and provide a glimmer of hope. Kathie Heirs, CEO of AIDS Alabama, once said, "We had a life before HIV." Now, I've reclaimed my life serving as the Treatment Adherence/Peer Support Specialist and providing psychosocial supportive services, conducting HIV testing, partnering with prevention services, and my all time favorite, advocating for others. I represent community and engage with peers as a mentor to show them that we are family and we have voice.

The ADAP Advocacy Association's national advocacy has warranted me the greatest opportunities of networking and building advocacy. Where I used to be a recipient of the AIDS Drug Assistance Program, now I can assist others to receive. I am elated to sit on their board of Directors because their CEO saw potential in me to transcend voice!

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.