Thursday, June 29, 2017

Promoting & Protecting the AIDS Drug Assistance Program

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

aaa+ ADAP Advocacy Association - Celebrating 10 Years - Promoting & Protecting the AIDS Drug Assistance Program
July 2007 officially marked the birth of the ADAP Advocacy Association, when a small Steering Committee filed the non-profit Articles of Incorporation in the District of Columbia and applied for its 501(c)(3) tax-exempt status with the Internal Revenue Service (which would be granted five months later). For a decade, we have been "promoting and protecting the AIDS Drug Assistance Program" (ADAP).

None of it would have happened without the steady guidance from D. Ben Tesdahl, attorney for Powers, Pyles, Sutter & Verville (PPSV)  who provided his services pro bono, and as such would receive our very first ADAP Champion Award the following year in 2008! "Steady guidance" because along the way in obtaining our registered trademark, we bumped heads with the Automobile Association of America and Blue Cross Blue Shield ('s a very long story). Thank you, Ben!

Earlier this year, we posted about our "10 Years of Accomplishment, Advocacy & Access to Care" to recap some important milestones attained throughout our organization's history. None of these accomplishments would have happened without the tireless commitment and leadership from the individuals who have served on our Board of Directors since July 2007.

As we unveil our anniversary logo celebrating 10 years of providing the patient voice for people living with HIV/AIDS who rely on ADAP, we also dedicate this blog post to these twenty-five wonderful individuals. It is our way of saying "thank you" for their service! Our board members have included:
  • James Albino, 2008 to 2009
  • Michelle Anderson, 2009 to present
  • William E. Arnold, 2007 to present
  • Aaron Baldwin, 2014 to 2015
  • Robert Breining, 2010 to 2015
  • Wanda Brendle-Moss, RN, 2015 to present
  • Janine Brignola, 2011 to 2016
  • Elmer R. Cerano, 2008 to present
  • Crosby Cromwell, 2010 to 2013
  • Eric Flowers, 2012 to present
  • Darryl Fore, 2011 to present
  • Philip A. Haddad, MD, 2007 to present
  • Hilary Hansen, 2016 to present
  • John D. Kemp, Esq, 2007 to 2009
  • Jen Laws, 2016 to present
  • Duane Malone, 2009 to 2010
  • Glen Pietrandoni, Rh.P, 2009 to present
  • Gary Rose, 2007 to 2008
  • Elizabeth Shepherd, 2010 to 2015
  • Keita Simmons, 2007 to 2009
  • Robert Suttle, 2015 to present
  • Chrys Thorsen, 2014 to 2016
  • Joyce Turner-Keller, Arch-Bishop, 2007 to 2012
  • Rani G. Whitfield, MD, 2007 to 2008
  • Joey Wynn, 2009 to present
Among our directors, John D. Kemp, Gary Rose, and Arch-Bishop Joyce Turner-Keller, and Dr. Rani Whitfield have been named Directors Emeritus. We look forward to another decade dedicated to raising awareness, offering patient educational program, and fostering greater community collaboration.

Thursday, June 22, 2017

Summer is Hot, but the Debate Over Drug Pricing could be even Hotter

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

Temperatures across the United States are sizzling with the arrival of summer, but they could pale in comparison to the emerging debate over the rising cost of prescription drugs. A state ballot initiative, coupled with a rumored presidential executive order and pending federal legislation in Congress are setting the stage for a heated battle over drug pricing.

In Ohio, voters are already being inundated with 30-second political attack ads from both sides of the debate. One advocate in the state has said, "Every commercial break is flooded with them... and it is only summer." The "Ohio Drug Price Relief Act" will take center stage before the voters in November 2017, with spending on political ads expected to break all previous records for any statewide ballot initiative.

The ballot initiative would "require the state of Ohio to pay no more for prescription drugs than the U.S. Department of Veterans Affairs (VA), which has negotiated a discount of up to 40 percent."[1] It is supported by the Ohio Taxpayers for Lower Drug Prices, and it is opposed by the Ohioans Against the Deceptive Rx Ballot Issue. Veterans groups have also lined up against the ballot initiative.

According to Ballotpedia, a "yes" vote supports the measure to require state agencies and programs to purchase prescription drugs at prices no higher than what the VA pays for them, and a "no" vote opposes the measure to require state agencies and programs to purchase prescription drugs at prices no higher than what the VA pays for them.[2]

"I would assume that the happiest people in Ohio today are the people who are selling television commercials. The pharmaceutical industry will spend whatever they believe they need to spend to try to confuse and mislead the public," summarized Rick Taylor, a consultant for the Ohio Taxpayers for Lower Drug Prices.[3] Here is a political ad airing in support of the ballot initiative:

TV commercial linked to
Source: Ohio Taxpayers for Lower Drug Prices

Curt Steiner, campaign manager for the Ohioans Against the Deceptive Rx Ballot Issue, argued, “Experts who have studied the proposal — including three former Ohio Medicaid Directors and a former state Budget Director — say it’s not only unworkable, but could actually increase prescription drug costs for the majority of Ohioans and reduce patient access to needed medications.”[4] Here is a political ad running against the ballot initiative:

Source: Ohioans Against the Deceptive Rx Ballot Issue

With the ballot initiative over four months away, voters in Ohio might simply turn off their televisions rather than contend with the forthcoming onslaught of these negative ads. There has been no public polling released on the issue in Ohio (...yet), but a similar ballot initiative failed last November in California.

In the meantime, news reports are floating that President Donald J. Trump plans to issue an executive order on drug pricing, though the timeline remains unclear. A draft version of the executive order, which was obtained by The New York Times, appears to give into demands by the pharmaceutical industry and rolls back numerous regulations.[5]

Some had hoped for rebates in Medicare Part D that would be similar to Medicaid,[6] but they appear absent from the draft obtained by The New York Times. Such a move would have greatly benefited consumers. It hard to see how the draft executive order would assist consumers, or public payors — such as State AIDS Drug Assistance Programs.

The measure is already being met with skepticism, especially because it appears to roll-back discounts authorized under the 340B Drug Discount Program. Dr. Joshua M. Sharfstein, a professor at Johns Hopkins Bloomberg School of Public Health, summarized this concern by saying, “That’s one that sticks out as a bit of a head scratcher. This is the executive order to lower drug prices — why would you put in a provision that would raise drug prices?[7]

Speaking for many in the patient advocacy community, Eddie Hamilton with the ADAP Educational Initiative questioned, "We don’t have any further information on this proposed draft, but it does raise some concerns. It appears to target 340B and the hospitals are, of course, screaming but we can’t verify that our community will be spared."

Congress isn't absent from the debate over drug pricing. In fact, a recent article in Roll Call spelled out the enormous pressure faced by lawmakers to do something on lowering the cost of prescription drugs. Presently, 802 bills addressing drug pricing have been introduced in Congress since the beginning of the year. Among them are the following:
  • S.1369 - A bill to amend the Internal Revenue Code of 1986 to establish an excise tax on certain prescription drugs which have been subject to a price spike, and for other purposes. (Note: H.R.2974 is the companion legislation before the House of Representatives)
  • S.1131 - Fair Accountability and Innovative Research Drug Pricing Act, which is a bill to require reporting regarding certain drug price increases, and for other purposes. (Note: H.R.2439 is the companion legislation before the House of Representatives)
  • H.R.1316 - Prescription Drug Price Transparency Act, which is a bill to amend title XVIII of the Social Security Act to provide for pharmacy benefits manager standards under the Medicare prescription drug program and Medicare Advantage program to further transparency of payment methodologies to pharmacies, and for other purposes.
  • H.R.242 - Medicare Prescription Drug Price Negotiation Act, which is a bill to amend part D of title XVIII of the Social Security Act to require the Secretary of Health and Human Services to negotiate covered part D drug prices on behalf of Medicare beneficiaries.
Ballot initiatives, executive orders, and legislation are all stoking the flames over the drug pricing debate, but they don't even include ongoing litigation filed by 20 state attorney generals. It is clear that the issue has reached a climactic point and something needs to be done about it. The ADAP Blog will continue to monitor each of these developments.

[1] Pelzer, Jeremy (2017, May 3). Fight over Ohio Drug Price Relief Act ballot issue could set spending record. Retrieved from
[2] Ballotpedia. Ohio Drug Price Standards Initiative (2017). Retrieved from 
[3] Pelzer, Jeremy (2017, May 3). Fight over Ohio Drug Price Relief Act ballot issue could set spending record. Retrieved from
[4] Troy, Tom (2017, May 23). Opponents launch TV ad against Ohio Drug Price Relief Act. The Toledo Blade. Retrieved from
[5] Kaplan, Shelia, and Katie Thomas (2017, June 20). Draft Order on Drug Prices Proposes Easing Regulations. The New York Times. Retrieved from
[6] Nather, David (2017, May 12). Mulvaney says Trump wants executive action on drug prices. Axios. Retrieved from
[7] Kaplan, Shelia, and Katie Thomas (2017, June 20). Draft Order on Drug Prices Proposes Easing Regulations. The New York Times. Retrieved from

Thursday, June 15, 2017

2017 National ADAP Monitoring Project Annual Report

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

National ADAP Monitoring Project - 2017 Annual ReportOn May 18th, an analysis of the AIDS Drug Assistance Program (ADAP) was released by the National Alliance of State & Territorial AIDS Directors (NASTAD). The 2017 National ADAP Monitoring Project Annual Report 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 report, which is published annually by NASTAD, provides stakeholders an important snapshot into ADAP-related data, information, and trends. This year's report focuses on several areas, including:
  • The importance of the Ryan White Program and ADAP (p. 6)
  • What does it take to achieve viral suppression (p. 20)
  • Comprehensive care for people living with HIV/AIDS (p. 42)
  • Who benefits from services (p. 58) 
Upon releasing the 2017 National ADAP Monitoring Project Annual Report, Murray C. Penner, NASTAD's executive director, stated the following:[1]
"Over the course of time, there have been significant shifts in funding and client needs; ADAPs have worked to meet those needs, however, have sometimes found themselves unable to serve all those in need of services. Lessons have been learned from these circumstances and ADAPs continue to look to identify how they can meet client need and ensure program sustainability. At a time now when ADAPs are documenting program stability, it is imperative that ADAPs look back on how challenges were resolved and look to the future of client needs and determine ways to prepare for the future. ADAPs are at an unprecedented juncture of being able to look to target resources to populations that need them most, to partner with the RWPB to ensure that the whole client’s needs are met, and to identify ways to bolster treatment for individuals’ health."
The 2017 National ADAP Monitoring Project Annual Report overall yielded some very compelling data on the success of the AIDS Drug Assistance Program nationwide in 2016. Some key points are:
  • ADAPs provided medications to 225,517 clients in calendar year (CY) 2015, a 235% increase in utilization over the last 10 years;[2]
  • The majority (77%) of all clients served by ADAPs in CY2015 were reported as virally suppressed, de ned as having a viral load that is less than or equal to 200 copies/mL;[3]
  • Twenty-eight (28) states contribute funding to their ADAP budget.[4]
  • Thirty-eight (38) states receive drug rebates to their ADAP budget.[5]
  • Overall, nearly 98% of Part B and ADAP budgets are allocated to program services; only 2.2% of Part B and ADAP funding is used to administer the program;[6]
  • The majority of ADAPs pay premiums (84%), deductibles (84%) and prescription co-payments/co-insurance (94%) on behalf of eligible clients.[7]
  • Forty-three (43) ADAPs reported using funds for insurance purchasing/continuation, representing $161.8 million in estimated expenditures (10% of the ADAP budget at that time) for 30,621 ADAP clients, with an average cost per client of $5,284.[7]
Accompany this year's report are two infographics. NASTAD used one infographic to provide an analysis on ADAPs with the highest rates of viral suppression. Download the infographic, Key Characteristics of Ten ADAPs With Highest Rates of Viral Suppression. The other infographic gives an analysis on the Ryan White Part B and ADAP partnership. Download the infographic, Ryan White Part B and ADAP Partnership to Bolster Health Outcomes.

Total ADAP budgets range from $2.5 million (New Hampshire) to $348.9 million (New York)
Photo Source: NASTAD

Several advocates commented on the 2017 National ADAP Monitoring Project Annual Report, providing some important state perspectives. They include:

Ken Bargar, co-chair of the Florida HIV/AIDS Advocacy Network in Florida stated, "FHAAN has made access to our state's ADAP for Floridians a number one priority for many years. As Co Chair, I can tell you that we experience a great relationship with the Florida Department of Health, and we have provided many solutions for improving the program that they have implemented over the years. As a Medicaid non-expansion state, ADAP is crucial for people living with HIV in Florida. The increasing amount of clients receiving premium support for ACA plans has made this program robust and diverse in the ways they get access to HIV medication to our state’s most vulnerable clients. Recently, we were thrilled to see “pharmacy choice” finally became a reality for a section of the programs enrollees."

Eddie Hamilton, executive director of the ADAP Educational Initiative in Ohio, "In terms of transparency and the responsiveness to client’s concerns, Ohio's ADAP has come a long way since the last waiting list era. The ease of access to the program has drastically improved as there are now multiple routes of access (via case management, or direct application)."

Marcus J. Hopkins, an ADAP recipient and HIV/AIDS advocate in West Virginia, summarized, "West Virginia's ADAP is one of only twelve states in which 89% of enrolled clients in 2015 have achieved HIV Viral Loads ≤200. Our state had 1,139 clients in 2015, and only 3 Ryan White-specific clinics, meaning that many clients must travel 60 miles or more in order to reach one of these facilities. Our state is broken up into seven Ryan White regions, with 1 primary case manager contact per region. The small number of clinics serving 55 clinics (not including private Infectious Disease specialists) sometimes creates confusion, as clients living in different regions may have to coordinate between two different case workers. West Virginia's program also offers insurance continuation assistance, providing premium and co-pay assistance for clients enrolled in employer-based or ACA Insurance Marketplace coverage."

Matt Pagnotti, Director of Policy and Advocacy for AIDS Alabama, noted, "Since Alabama has failed to expand Medicaid under the ACA, the state's ADAP has operated as a vital safety net for thousands of people living with HIV in Alabama. Over three fourths of the clients served by Alabama's ADAP earn 133% FPL ($16,040 a year for a single adult) or less, most of whom find themselves in the "Medicaid coverage gap." In addition, roughly 16% of those served by ADAP in Alabama qualify for subsidized health insurance under the ACA marketplace. To assist these clients in overcoming financial barriers to access and create greater coverage completion, Alabama also operates an innovative Insurance Assistance Program that pays for premiums and co-payments."

The ADAP Advocacy Association commends NASTAD for its ongoing efforts to keep stakeholders informed, and engaged on the issues enumerated in this year's National ADAP Monitoring Project. Download a copy of the 2017 National ADAP Monitoring Project Annual Report.

[1] Penner, Murray (2017, May 18); NASTAD Release: 2017 National ADAP Monitoring Project Annual Report; National Alliance of State & Territorial AIDS Directors.
[2] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 60. Retrieved from
[3] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 22. Retrieved from
[4] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 9. Retrieved from
[5] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 9. Retrieved from
[6] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 22. Retrieved from
[7] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 44. Retrieved from
[8] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 43. Retrieved from

Thursday, June 8, 2017

Linkages to Care - Housing is Healthcare: Linking Stable Housing & Medication Adherence

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

Find me a physician who treats patients living with HIV/AIDS, and I'm certain the physician stresses medication adherence to anyone who will listen (yes, probably even Dr. Ben Carson). Find me a patient living with HIV/AIDS, and I'm certain the patient notes an equally important message: I cannot worry about my medications unless I have a roof over my head (yes, someone needs to tell Dr. Ben Carson). Intertwined are these two important facts.

The important linkage between housing and healthcare was spelled out last year in a blog by Kathie Hiers, who serves as the President & CEO for AIDS Alabama. In her blog, Housing=Healthcare, Hiers stated the following key points:
According to the National Low Income Housing Coalition’s 2015 Out of Reach Report, not a single state in our nation offers a one-room apartment that a person working full time and making minimum wage can afford. In fact, federal minimum wage has not increased since 2009 while rents have risen in almost all metropolitan areas. For PLWH, the need for housing assistance is far too commonplace. According to the National AIDS Housing Coalition, at any given time about 50% of 1.2 million PLWH in our country experience homelessness or housing instability. Additionally, research indicates that people who are unstably housed or homeless have HIV rates up to 16 times as high as persons in stable housing. Unfortunately the need substantially outstrips the resources. But here’s the bottom line: housing for PLWH improves medical outcomes, reduces new transmissions through a reduction in risky behaviors, and provides cost savings. So much research exists to confirm these results that AIDS and Behavior in 2007 dedicated an entire issue to illustrate the findings.[1]
Unfortunately, there aren't enough affordable, stable housing units available to keep up with demand. The shortage undermines efforts to achieve positive health outcomes in many areas of the country, both in rural and urban areas. Efforts are underway to modernize the federal housing programs designed to help those in need, including the Housing Opportunities for Persons with AIDS (HOPWA). But not all of the "efforts" are necessarily good for the people the programs are designed to assist.

Dr. Ben Carson testifying before Congress
Photo Source:

Testifying earlier this week before the U.S. Senate Committee on Appropriations Subcommittee on Transportation, Housing and Urban Development, Dr. Ben Carson, Secretary of the U.S. Department of Housing & Urban Development (HUD), summarized some of these changes to the federal government's housing policy:
"Last year’s changes to the formula for Housing Opportunities for Persons with AIDS (HOPWA) was a great step towards efficiency, shifting funding to areas with higher numbers of HIV/AIDS cases, rather than historical incidents. This is the kind of targeted efficiency that will help us do the most with limited Federal resources. We provide a phased-in approach to the new formula to provide communities time to adjust. The additional funding in 2017 also will help provide communities more time to adjust to the new formula. The 2018 Budget provides $330 million for HOPWA."[2]
Ironically, Secretary Carson failed to mention that the Trump Administration's proposed Fiscal Year 2018 budget calls for a $26 million funding cut from HOPWA and that "these cuts will certainly increase the number of people living with HIV who will not have stable housing."[3] The proposed reduction represents nearly a 7 percent cut in funding.

Concerns have been mounting over the potential impact of funding cuts to housing programs, as well as healthcare programs. David Reiss' Op-Ed earlier this year characterized the proposed budget as "bad news."[4]

Housing is Healthcare
Photo Source: Community Partnership of the Ozarks

In an effort to raise awareness about affordable, stable housing and how it improves medication adherence for people living with HIV/AIDS and/or viral hepatitis, we will host an educational training webinar on June 28, 2017. The webinar, "Housing is Healthcare: Linking Stable Housing & Medication Adherence," will discuss the research that supports housing as a structural intervention that improves health outcomes through improved adherence to treatment. Presenters will share successful housing models where residents have seen this success. It will provide webinar attendees with how to use research to show the direct causation between health outcomes and housing placement, and understand strategies to the connection between medication adherence and stable housing.

Registration is open to all stakeholders. Registration is complimentary for PASWHA members, and it is also complimentary for patients living with HIV/AIDS. Use this scholarship link if you are a patient living with HIV/AIDS applying for a webinar scholarship.

Additional information about the webinar is available online at

[1] Hiers, Kathie (2016, May 6); ADA Blog; Housing=Healthcare; ADAP Advocacy Association. Retrieved from
[2] Carson, M.D., Ben (2017, June 7); Written Testimony on Review of the FY2018 Budget Request
for the U.S. Department of Housing & Urban Development; Committee on Appropriations Subcommittee on Transportation, Housing and Urban Development. Retrieved from
[3] Schmid, Carl (2017, May 23); TRUMP BUDGET: A SETBACK TO HIV AND HEPATITIS ELIMINATION; The AIDS Institute. Retrieved from 
[4] Reiss, David (2017, March 16); Trump's budget proposal is bad news for housing across the nation; The Hill. Retrieved from

Thursday, June 1, 2017

Finding Emotional & Physical Health in Sobriety

By: Jonathan J. Pena

Philosopher Kahlil Gibran once wrote, “Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”

I believe that we are all products of our environment. That the experiences we are exposed to greatly influences our behavior and process of thinking, which we carry with us throughout our entire lifetime. The products of my environment lead me down a path of immense suffering; it was one I desperately tried masking by altering myself with my great escape into drugs. My addiction, my sexuality, my HIV-positive diagnosis, and the loss of my mother to cancer were all struggles that have left there mark.

When I was five years old my parents got divorced because my dad was unfaithful to her. I was totally devastated. As I got older, I started to carry feelings of blame and started to believe that I had done something wrong to cause my father not be around my mom and his two first-born sons.  Around this same time, I was also feeling displaced from my peers because I just felt different from everybody else. I didn’t necessarily fit in with any of the kids or groups in school, and feelings of loneliness seeped in. I don’t believe that children are capable of processing the emotions of a divorce, nor the complexities of ones sexuality. All I knew for sure is that I was in a lot of pain and feeling very inadequate.

All of that emotional weight and pressure needed a place to go or a way to be released, and I found my escape in drugs. It started with pot and escalated into harder drugs. In the end, I became addicted to crystal meth and my life became completely unmanageable. My relationships with family and friends suffered or completely disappeared. I was losing countless jobs, tons of money, along with my dignity...and my life. My addiction to crystal meth led me into prostitution. I couldn’t hold down a steady job so in order to manage any sort of bills and my habit, I sold my body to any man who was willing to open up his wallet. Somewhere, in the middle of all that, I became HIV-positive. I was already struggling with the mere idea of my self worth, and testing HIV-positive completely shattered me because who was going to love me knowing that I was so tainted?

In 2015, I checked myself into a drug rehabilitation center in Philadelphia and during this time my mom’s battle with Leukemia was taking its toll. The cancer had spread to her brain and one month after I completed my program she passed away. I was holding her hand when she passed and the pain of her loss was unbearable. However, I was grateful that sobriety gave me the opportunity to be present for her death. I relapsed shortly afterwards because I was unable to process my emotions of pain and loss. But...I didn't give up on myself.

Photo of Jonathan J. Pena
Today, I am living a sober life and approaching my one-year anniversary. My outlook on being HIV-positive has changed, and I no longer view myself as being tainted or unlovable. I am completely adherent with my medication and as such, my viral load is undetectable. I have realized the importance of maintaining and respecting my emotional and physical health, which includes taking my medication every day. Being HIV-positive doesn’t define me, but rather it is a part of me. 

Through sobriety and therapy, I have also become employed and living in my own apartment. I was recently accepted into North Carolina State University, where I will begin classes in the Fall 2017. I am studying to be an Oncology social worker with the hopes of being a support system for those who have lost a loved one due to cancer. I have re-established my connections with the people that I love and that love me in return. I am grateful, humbled, and renewed in my purpose in life through my sobriety.

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.