Thursday, February 14, 2019

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.

Photo of Bob Skinner
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.

Unchartered Water: AIDS Drug Assistance Programs in the Age of Trump

HIV-positive advocates interested in submitting an application should do so online at

Thursday, February 7, 2019

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.

Thursday, January 31, 2019

New Research Shows Changes to the Six Protected Classes Would Harm Most Vulnerable Patients and Are Unnecessary

By: Juliet Johnson, Deputy Vice President of Public Affairs, PhRMA

Reprinted with Permission from the Pharmaceutical Research and Manufacturers of America

In Medicare Part D, the six protected classes policy protects vulnerable seniors and low-income beneficiaries with serious and complex health conditions, while also allowing Part D insurance plans to use the tools they need to control costs. Medicines for some of the sickest patients in Part D are covered within the six protected classes, including those for cancer, epilepsy, HIV/AIDS and mental illness.  Many of these conditions require patients to attempt a variety of therapies before they and their doctor settle on the most appropriate treatment, so there is no one-size fits all medicine for these conditions.

Unfortunately, the Centers for Medicare & Medicaid Services (CMS) has issued a proposed rule that would weaken the six protected classes by allowing Part D plans to restrict access to medicines by: using prior authorization or step therapy for patients already stable on a six protected classes medicine, including patients who are taking HIV/AIDS medicines; excluding a protected class drug if the drug is simply a new formulation regardless of whether the old formulation is still on the market; and excluding a drug from the protected classes if its list price increased more than general inflation.

New data from IQVIA’s US Market Access Strategy Consulting team highlights how plan sponsors are already using the tools they currently have to manage costs and how devastating these changes could be to many seniors and low-income beneficiaries who rely on the six protected classes for their treatment.

Currently, plans have ample opportunity to use utilization management tools to contain costs and influence the medicines new patients begin their treatment with in the protected classes, with the exception of HIV patients. For HIV, CMS historically has not permitted plans to use utilization management for patients new to therapy because “utilization management tools such as prior authorization and step therapy are generally not employed in widely used, best practice formulary models” for HIV (CMS, 2010). Analysis of IQVIA’s longitudinal patient claims data finds that, depending on the class, between 27 percent and 48 percent of patients taking a medicine in one of the five non-HIV protected classes are new to treatment in a given year.

Changes to the six protected classes impact Low Income Subsidy (LIS) patients heavily as they make up a substantial portion of beneficiaries within the six protected classes, particularly within the mental health and HIV/AIDS classes. LIS beneficiaries have limited income and resources so they are eligible for extra help to access their medicines. For example, in 2019, for beneficiaries to be eligible for LIS their annual income is limited to $18,210 for an individual, or $24,690 for a married couple living together. That means for LIS patients it is that much more important that the six protected classes provide access to required medicines for their complex condition because they do not have the disposable income to pay for them without coverage.

IQVIA found that LIS patients represent more than one in four beneficiaries across the protected classes; and for certain classes it can be as high as 65 percent of patients. Therefore, if the changes proposed by CMS were implemented, jeopardizing access to the drugs in the six protected classes, it could have devastating consequences for literally the most vulnerable of the most vulnerable Part D beneficiaries.

Enabling plans to limit access to the medicines that patients rely on would weaken the six protected classes to such an extent that the classes could no longer be considered truly “protected.” Plans are already effectively using the tools they have, making it unnecessary to enact changes that would jeopardize access for the most vulnerable of the sickest patients in Part D.

  • CMS, Medicare Prescription Drug Benefit Manual, Ch. 6, 30.2.5 (Feb. 19, 2010)

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 24, 2019

Pharmacists' Hands No Longer Tied by Pharmacy 'Gag Orders'

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

In healthcare the relationship between patients and their pharmacists is extremely important, similar to the one that exists between patients and their physicians. Thanks to bipartisan legislation that was signed into law late last year the patient-pharmacist relationship is even stronger. Gone are the ridiculous pharmacy “gag orders” that prohibited pharmacists from sharing with patients that they could save money by paying cash for prescription medications rather than using their health plan.

According to Kaiser Health News, both bills — one for Medicare and Medicare Advantage beneficiaries (S.2553) and another for commercial employer-based and individual policies (S.2554) — passed Congress with little dissent. The legislation was endorsed by the National Community Pharmacists Association (NCPA), American Medical Association, Alliance for Transparent and Affordable Prescriptions, ERISA Industry Committee, Pharmaceutical Care Management Association, and America’s Health Insurance Plans (Jaffe, 2018). Most patient advocacy groups also supported the effort to lift the gag orders.

Trump signs bills lifting pharmacist 'gag clauses' on drug prices
Photo Source: NBC News | Saul Loeb / AFP - Getty Images
Senators Susan Collins (R-Maine), Claire McCaskill (D-Missouri), and Debbie Stabenow (D-Michigan) introduced the bipartisan legislation in the U.S. Senate. It passed 98-2. Representative Earl L. “Buddy” Carter — who is a pharmacist by trade — introduced the companion legislation in the U.S. House of Representatives.

"As a pharmacist for more than 30 years, I can say firsthand that I was prohibited many times from telling my patients that there was a cheaper option available to them because of a gag clause," Rep. Carter said in a statement upon introducing . "Pharmacists must be able to tell patients what is in their best interest and this legislation works to make that happen. Patients need and deserve the most affordable options" (Carter, 2018).

In recent years, states had already started to remove such restrictions. According to a detailed report by the National Conference of State Legislatures, between 2016 and 2018, at least 30 states enacted laws among at least 41 state legislatures that considered prohibiting “gag clauses” in contracts that restrict pharmacists (Cauchi, 2018). It has long been said that the states are the laboratories of democracy, and on this issue they proved to be right.

State legislation to prohibit "gag clauses" applying to pharmacists
Photo Source: NCSL
It remains to be seen whether removing pharmacy gag orders will alleviate the high cost of prescription medications, but it is a good start. estimates S. 2554 will save $88 million through 2028. There is no good, ethical reason why patients should be denied access to any information that might save them money. Pharmacists are an under-utilized community resource and the patient-pharmacist relationship is often under-appreciated but the new laws could change both.


Thursday, January 17, 2019

Safe Medicines in the United States aren't a Guarantee

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

In 2019, prescriptions medicines in the United States are not immune from the increasing dangers associated with counterfeit drugs. In fact, it can be a serious issue. Dating back to the start of the HIV/AIDS epidemic in the United States, it is an issue that has also resulted in Black Market HIV/AIDS prescription medicines falling into the unknowing hands of HIV-positive consumers. Therefore, raising awareness about counterfeit drugs and the dangers associated with drug importation is an issue the ADAP Advocacy Association takes very seriously.

On January 31st, we are proud to sponsor a series of Congressional Briefings on counterfeit medications  which are being hosted by The Partnership for Safe Medicines ("PSM"). It is an issue that has impacted me, personally, and why I penned an Op-Ed in the Washington Blade last year on the inherent dangers (Drug importation policy is a hard pill to swallow).

I ordered medications from an online Canadian pharmacy. To this day, I have no way of knowing where the drugs were made or if they contained the active ingredients I needed to effectively treat my condition.

Counterfeit medications affect all patients: patients with acute diagnoses, patients with chronic conditions, and patients with immunodeficiency. A patient who has an acute bacterial infection needs a legitimate antibiotic with a proper dose to kill the bacteria and is endangered by the rebounding infection caused by a counterfeit that is beneath sufficient dosage. A patient with a chronic condition who needs maintenance medications may weaken and worsen if their maintenance meds are substandard in dosage. Patients with immunodeficiency may end up with serious additional infections if medications they take have not been sourced and stored in sterile conditions.

HIV patients may suffer all of these things at the hands of unscrupulous drug counterfeiters. Come to PSM's Congressional Briefings to hear the stories of counterfeit medicine victims, including an HIV patient, who received counterfeit drugs that impacted his health. Upcoming legislation proposals to bypass the U.S. Food and Drug Administration's safety protocols and import medicine from foreign sources that can neither be verified nor regulated will have profound affect upon all of the populations of patients who depend upon safe, accurate medicine to maintain their health.

HIV red ribbon next to spoon filled with Rx medicines
Photo Source: Community Access National Network

Black Market HIV/AIDS prescription drugs have been in the news for many years. In fact, several years ago PSM published an important report in collaboration with the Community Access National Network ("CANN"). The PSM-CANN report outlined numerous instances of counterfeit drugs in the HIV/AIDS drug supply change between 2006 and 2013. Download the report online.

Register today to attend either the free House breakfast event at 9 a.m., or the free Senate lunch event at 12 p.m., on January 31, 2019 in Washington, DC.

Friday, January 11, 2019

Sometimes Circumstances Dictate 'Positive' Change

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

Happy New Year! With a new year comes new beginnings and very often it dictates needed change. The ADAP Advocacy Association is seeking to make some 'positive' (pun intended) changes to its HIV/AIDS advocacy agenda this year, especially in light of the current political environment.

Positive Change Ahead
Photo Source:

The current occupant residing at 1600 Pennsylvania Avenue has turned HIV/AIDS advocacy on its head, some of which impacted the AIDS Drug Assistance Program. Federal public policy is undergoing a lot of upheaval so many of the planned changes being implemented by our organization reflect the need to better engage local advocates at the community level. These changes will be periodically announced throughout the year, but this week's blog will highlight a few of them.

Our ADAP Blog will feature a monthly guest blog by advocates living with HIV/AIDS, whereby they will share their personal advocacy journey fighting the epidemic. Two such guest blogs were shared last year, by Wanda Brendle-Moss and Michael Zee Zalnasky. The guest blogs seek to share some valuable lessons learned by advocates.

Our Annual ADAP Conference will be replaced by numerous HIV/AIDS Fireside Chat Retreats, convened across the country. Two such Fireside Chats were held last year in Tampa, Florida and Boston, Massachusetts. Our Fireside Chats convene key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS and/or viral hepatitis. Patient advocates will continue to play a central role during these important discussions (with advocacy scholarships offered).

We will be re-convening our ADAP Advocacy Council (details forthcoming). Additionally, we will seek to leverage existing community partnerships with AIDS Service Organizations to better engage local advocates on Federal public policy issues. We anticipate 2019 being another challenging year for the HIV/AIDS community, but we're taking steps to ensure our advocacy remains relevant and effective.

Thursday, December 13, 2018

HIV/AIDS Fireside Chat Retreat in Boston Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Boston, Massachusetts among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS and/or viral hepatitis. The Fireside Chat took place on Thursday, November 8th, and Friday, November 9th, and it built on the previous retreat held in Tampa, Florida earlier in the year.

FDR Fireside Chat
Photo Source: Getty Images

The Fireside Chat included a series of three moderated white-board style discussions about the following issues:
  • HIV & Aging
  • Drug Importation
  • Ryan White Program Reauthorization
Each of the white board discussions was facilitated by a recognized content expert followed by an in-depth dialogue among the retreat attendees. The discussions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat.

The following represents the attendees:
  • Tez Anderson, Executive Director & Founder, Let’s Kick ASS (AIDS Survivor Syndrome)
  • William E. Arnold, President & CEO of the Community Access National Network (CANN)
  • Marcus Benoit, Ryan White Regional Liaison & Eligibility Coordinator, Houston Regional HIV/AIDS Resource Group, Inc.
  • Brandon Cash, Theratechnologies
  • Jeffrey S. Crowley, Program Director at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center
  • Tishna Dhaliwal, Director, Healthcare Policy & Strategy, Johnson & Johnson
  • Edward Hamilton, Executive Director & Founder of ADAP Educational Initiative
  • Hilary Hansen, Executive Director, Advocacy & Strategic Alliances (US) at Merck
  • Stephen R. Hourahan, Executive Director, AIDS Project Rhode Island (APRI)
  • Lisa Johnson-Lett, Treatment Adherence Specialist / Peer Educator, AIDS Alabama
  • Brandon M. Macsata, CEO of the ADAP Advocacy Association
  • Julie Marston, Executive Director, Community Research Initiative (CRI)
  • Tim Miley, Associate Director, State Government Affairs – Northeast, Gilead Sciences
  • Theresa Nowlin, advocate
  • David Pable, Community Co-Chair SC HIV Planning Council
  • Samantha Picking, PharmD, RPh, AAHIVP, Healthcare Specialty Supervisor, Walgreens
  • David Reznik, Chief, Dental Medicine, Grady Health System Infectious Disease Program
  • Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
  • Shabbir Imber Safdar, Executive Director, The Partnership for Safe Medicines
  • Carl Sciortino, VP of Government & Community Relations, Fenway Health
The ADAP Advocacy Association is pleased to share the following brief recap of the Fireside Chat.

HIV & Aging:

The discussion on HIV & Aging was facilitated by Tez Anderson, Executive Director & Founder, Let’s Kick ASS (AIDS Survivor Syndrome) based in San Francisco, CA. Anderson has coined the phrase, AIDS Survivor Syndrome, to address the litany of issues facing HIV/AIDS long-term survivors. Adults over 50 make up the majority of people living with HIV/AIDS in the United States. By 2020, it will increase to 70%. According to Anderson, "Aging populations present challenges to the healthcare system, and providers are ill-prepared for an aging population. We are going to have be creative in devising new strategies for providing integrated HIV and geriatric care, and for meeting the long‐term needs of clients with increasingly complex needs."

Since aging with HIV is not a monolithic, retreat attendees dived into accentuated aging, living with co-morbidities, HIV-related enteropathy and/or peripheral neuropathy, as well as other issues affecting quality of life for the aging HIV population.

The following materials were shared with retreat attendees:
The ADAP Advocacy Association would like to publicly acknowledge and thank Tez for facilitating this important discussion.

Drug Importation:

According to Shabbir Imber Safdar, Executive Director, The Partnership for Safe Medicines, there are a wide variety of options for addressing financial impediments to healthcare access. The healthcare supply chain is convoluted and two people that receive the same treatment, test, or medicine often pay wildly different amounts. Not all of these are equally safe for patients.

Shabbir challenged the retreat attendees with a series of questions. First, we must understand the supply chain. How does it work in the US vs other countries? When it fails, how does it fail? What examples of failure exist that we can learn from? How do counterfeits get into our supply chain? Is our drug supply safer or more polluted than other countries? Why is that?

The discussion about the dangers involved with drug importation, including what exactly is the risk of patients breaking the supply chain? Is it just a loss of financial resources? Is a counterfeit that's just a placebo really that dangerous? And beyond the potential dangers, then other issues emerge when obtaining medicine from other countries domestic drug supply. Do they have shortages of their own? Are there other countries large enough to supply medicine to us?

The retreat attendees were also asked, so what's the answer? Can we judge different proposals on the basis of patient safety? Is there any time we want to sacrifice patient safety for access?

The following materials were shared with retreat attendees:
The ADAP Advocacy Association would like to publicly acknowledge and thank Shabbir for facilitating this important discussion.

Ryan White Program Reauthorization:

The discussion about underserved communities served (or potentially served) by the Ryan White Program was facilitated by Jeffrey S. Crowley, Program Director at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center. The world has changed since the 2009 reauthorization, as Jeffrey noted during this discussion. Research trials definitively have confirmed the benefits of immediate treatment, and the clinical guidelines have also changed. The use of care continuum and monitoring of durability of viral suppression continue to highlight gaps in care. The enactment of the Affordable Care Act (32 states and 62% of the HIV population lives in states that have expanded Medicaid) has changed the healthcare landscape. The 340B Drug Pricing Program is under pressure.

Some of the emerging issues/needs identified included the ongoing role of Ryan White in larger insurance system; early treatment and rapid start of ART/better supports for re-engaging people in care; addressing the needs of an aging HIV population; role of Ryan White in covering PrEP and PEP; Ryan White as a model for or its role in curing HCV and addressing the opioid crisis; and new technology is coming: preparing for long-acting agents.

Finally, Jeffrey led an all important dive into the risks in not reauthorizing versus the risks in reauthorizing the Ryan White Program. The Democrats regaining control of the U.S. House of Representatives certainly changes the dynamics surrounding possible reauthorization. 

The following materials were shared with retreat attendees:
The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey for facilitating this important discussion.

Additional Fireside Chats are planned in 2019.