Our Commitment to Transparency, 2023

By: Brandon M. Macsata, CEO, ADAP Advocacy

One of the most important foundational values embodied in the advocacy done by ADAP Advocacy are the partnerships with all stakeholders working to end the HIV epidemic in the United States. Look no further than our mission's support statement: "ADAP Advocacy works with advocates, community, health care, government, patients, pharmaceutical companies and other stakeholders to raise awareness, offer patient educational programs, and foster greater community collaboration." Equally important is our commitment to transparency. We need more transparency in public policy, as well as public health. As an organization, ADAP Advocacy takes great pride in the partnerships we've formed over the years, and as such we make no apologies for the financial support afforded to fund our efforts. The 340B Drug Pricing Program provides ample evidence of what happens when there is a lack of transparency. Highlighting our values statements and our commitment to transparency goes hand-in-hand with our unwavering conviction that the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion.

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Since our last transparency report in 2021, not much has changed. ADAP Advocacy still receives no taxpayer funding. We received no funding from the Ryan White HIV/AIDS Program, Medicaid, Medicare, HOPWA, or Veterans Affairs. Additionally, we receive no revenue from the lucrative 340B Program. All of our revenue is generated from individuals, corporations, foundations, and nonprofit organizations. Check out our Silver Transparency profile on Guidestar.

ADAP Advocacy has increasingly been engaging patient advocates on why reforming the 340B Program is in their best interests. The lack of accountability in the program and the near-zero transparency among the program's covered entities is mind-boggling, and that is an understatement. Our advocacy has led us to ask simple questions about where is all the money going, and who is actually being served who otherwise might not have received needed services and supports. Those efforts prompted us to examine the intersection between growing 340B revenues, increasing executive compensation, declining hospital charity care, and the explosion of the medical debt in this country. Upon releasing some of the examination's top-line findings, what would happen next epitomized the problems faced by those of us trying to put patients before providers.

Ever dealt with the media? They always have their angle, and it’s expected with interviews. But ya go into it with a smile, right? 

What followed with this so-called news "story" about our 340B examination resulted in nothing more than a classic "take down" piece from a publication financed by pro-hospital groups and well-financed lobbyists fueling anti-patient reforms! Despite the reporter being told our 340B examination was funded by general revenue dollars, his story attempted to still taint the findings with a "guilt by association" because drug manufacturers are among our advocacy partners and funders. Editor's Note: Since 2007, not once has a drug manufacturer attempted to attach strings or any quid pro quo to its funding either instructing us to support or oppose a single federal public policy initiative. Not once!

What’s funny is how our work was labeled as “drug industry backed” yet no mention of the hospital back or mega service provider backed opposition groups noted in the article. The woman questioning my intentions in the so-called news story has received a NINETY PERCENT (90%) increase in executive compensation since being name CEO in 2015. The reporter failed to mention that important factoid. I wonder how patients feel about that 90% pay raise or the disconnect between exploding 340B revenues and rise in CEO compensation, and patients still struggling. There is a darn good reason why on World AIDS Day, ADAP Advocacy sounded the alarm on the medical debt crisis facing consumers – including people living with HIV/AIDS (PLWHA).

A much more detailed summary of the 340B examination was provided by Marcus J. Hopkins, who serves on ADAP Advocacy's Ryan White Grantee 340B Patient Advisory Committee and conducted the data analysis. Upon Hopkins penning his guest blog, 340B Covered Entities’ Revenue Witnessed Huge Executive Compensation Increases, Alarming Charity Care Decreases, he was instructed by me to include the following transparency statement on me:

"At the request of ADAP Advocacy’s CEO, Brandon M. Macsata, to demonstrate transparency, we’re sharing some information about compensation paid to his firm, Purple Strategy Group, Inc. (PSG). PSG is paid a monthly management fee, which covers the work Brandon does on administrative, accounting, governance, marketing, and programs. The monthly fee is $8,000 per month, which has remained at that level since 2013 without an increase. Based on budget and net revenue year-end numbers, Brandon is also eligible to receive a performance bonus up to $6,500. Additionally, Brandon gives back to the organization annually, with his annual financial contributions ranging between $2,500 and $15,000+. No fringe benefits are paid, since Brandon is a 1099 contractor and not an employee. He is eligible to receive additional compensation for special projects that fall outside the scope of work, although most years there are no such projects."

Transparency is about not only talking the talk, but walking the walk. Ironically, upon further review of said publication, any reporting focused on 340B Program reform efforts gets labeled as “drug industry backed” in the story headline or opening paragraph. There doesn't appear to be a firewall between its "news" division and its advertisers, sadly enough.

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In 2023, our revenue, as it will be reported to the Internal Revenue Service, was $359,226.70, derived from numerous sources — including corporate partnerships, event sponsorships, program sponsorships, scholarship fund donations (ranging from $5.00 to $5,000.00), third-party donors (i.e., PayPal Giving Fund), and miscellaneous donations. Approximately 75% (in 2022, it was 82%) were membership dues received from pharmaceutical manufacturers. That means nearly one-fourth of our membership funding (25%) came from non-industry partners. Among organizational donors to our restricted Scholarship Fund, 45% of the funding was derived from pharmaceutical manufacturers and 55% from non-industry partners. For our flagship ADAP Directory sponsorships, approximately 77% was support from pharmaceutical manufacturers and 23% from non-industry partners. Among registration fees, only 22% came from pharmaceutical manufacturers and 78% from non-industry partners. We also received several thousand dollars from individual donations, supporting either our general mission or specifically supporting our restricted Scholarship Fund. Our organization strives every single year to achieve greater funding diversification because it is consistent with a sound business model. Some years we do better than others.

Our ongoing 340B Project was funded entirely by pharmaceutical manufacturers, including AbbVie, Bristol-Myers Squibb, Genentech, Gilead Sciences, Johnson & Johnson Health Systems (Janssen Pharmaceuticals), Merck, and Novartis. Their support has never been a deeply held secret. And it is worth noting, again, our 340B examination on 340B revenues, executive compensation, charity care, and medical debt was funded by general revenues and not the 340B Project, although moving forward that will change. Another ongoing project financed entirely by pharmaceutical manufacturers is our Long-Acting Injectables Project with support from Gilead Sciences, Merck, and ViiV Healthcare.

That said with respect to general revenues (memberships, scholarship fund, directory sponsorships), our top five pharmaceutical funders this year were Merck (20.66), Gilead Sciences (18.08%), Janssen Pharmaceuticals (15.50%), ViiV Healthcare (12.91%), and Napo Pharmaceuticals (1.00%). Our top five non-industry funders were Magellan Rx Management (7.75%), Ramsell Corporation (7.75%), Walgreens (5.17%), Community Access National Network (2.58%), and the Partnership for Safe Medicines (1.00%). We generated financial support from nineteen (19) corporate entities.

In totality, our corporate donors included AbbVie, AIDS Alabama, Bender Consulting Services, Bristol-Myers Squibb, Community Access National Network, Genentech, Gilead Sciences, Janssen Pharmaceutical Companies of Johnson & Johnson, Magellan Rx Management, Maxor National Pharmacy Services Company, MedData Services, Merck, Napo Pharmaceuticals, Novartis, Partnership for Safe Medicines, Patient Access Network Foundation, Patient Advocate Foundation, Pharmaceutical Research and Manufacturers of America, Ramsell Corporation, ScriptGuideRx, ViiV Healthcare, and Walgreens.

Our top individual donor was yours truly. In 2023, I personally donated $1,355.00 to the organization (an amount less than previous years because I directed more of my personal donations to help the nonprofit nursery school where my son attends). All donations made to our scholarship fund are restricted in nature, and as such can only be used toward funding scholarships for people living with HIV/AIDS and/or their advocates.

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ADAP Advocacy remains deeply committed to improving access to care for PLWHA. Every decision we make is made through the lens of the patient. When those interests align with the pharmaceutical industry, then so be it. In doing so, we're also not afraid to call out the hypocrisy behind the naysayers who question our intentions.

According to a survey Network for Good conducted among 3,000 donors, there are 7 reasons why donors give (and 1 reason they don’t). While the aforementioned survey solicited feedback from individuals, there are consistent ‘ideological sorting' motivations for giving among corporate donors and political donors. Donors give money to align themselves with causes they already support, and not the dogmatic 'vote-buying' hypotheses. There is plenty of research in this area, too.

It is important to remember that there is an inherent value in advocacy partnerships. We remain unapologetically pleased with the relationships we've built over the last 17 years since the organization's founding in 2007. We're thankful for the support from industry, and equally thankful for the support from our non-industry partners...which includes some individuals who give as little as five bucks!

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.