Our Commitment to Transparency, 2021

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

In April 2018, we highlighted our commitment to transparency in response to a report released by Kaiser Health News about the linkage between advocacy groups and the pharmaceutical industry, as if building broad-based coalitions was a bad thing?!?! It was true in 2018, and it remains true today that the ADAP Advocacy Association places a high value on transparency, as well as its solid working relationship with industry. In light of yet another "guilt-by-association" report, featured this time in Axios Vitals, we once again are called to our commitment to transparency.

Photo Source: smallbusiness.co.uk

At the time some years ago, we said:

"Several weeks ago, an important question was posed in a report released by Kaiser Health News. The report — Patient Advocacy Groups Take In Millions From Drugmakers. Is There A Payback? — aimed to "expose Big Pharma’s ties to patient groups." It boasted about a national database of 1,215 patient advocacy organizations that received money from the drug companies who KHN tracked in 2015. The ADAP Advocacy Association was not among the organizations in the database, however. Our annual budget is probably so small that it didn't warrant the effort to include us.

So...let me save everyone the suspense. We proudly list our supporters on our website, and also make available information about our corporate partnership levels on our website. This information is exactly what we share with any potential funder of our organization, so there is no smoke and mirrors. We also proudly list all of our financial supporters in our Annual Report, which is also available on our website."

For us, not much as changed. The ADAP Advocacy Association still receives no taxpayer funding. We received no funding from the Ryan White HIV/AIDS Program, Medicaid, Medicare, or HOPWA. Additionally, we receive no revenue from the lucrative 340B Drug Pricing Program. All of our revenue is generated from individuals, corporations, foundations, and nonprofit organizations. 

In 2021, our revenue, as it will be reported to the Internal Revenue Service, was $239,932.22, was derived from numerous sources — including corporate partnerships, event sponsorships, program sponsorships, scholarship fund donations (ranging from $5.00 to $1,541.22), third-party donors (i.e., PayPal Giving Fund), and miscellaneous donations. Approximately 67.00% (in 2018, it was 68.61%) were charitable donations received from pharmaceutical manufacturers. That means nearly one-third of our funding (33.00%) came from non-industry partners. Our organization strives every single year to achieve greater funding diversification because it is consistent with a sound business model.

That said, our top five pharmaceutical funders this year were Gilead Sciences (14.59%), Merck (14.59%), Janssen Pharmaceuticals (12.50%), ViiV Healthcare (10.42%), and AbbVie (10.42%). Our top five non-industry funders were Magellan Rx Management (6.25%), Ramsell Corporation (4.17%), Walgreens (4.17%), Community Access National Network (2.29%), and Avita Pharmacy (2.08%). In total, we generated financial support from twenty-one (21) corporate entities (which is lower than usual because all in-person advocacy events were suspended due to the Covid-19 pandemic).

Our corporate donors included AbbVie, AIDS Alabama, Avita Pharmacy, Bender Consulting Services, Community Access National Network, Gilead Sciences, Janssen Pharmaceutical Companies of Johnson & Johnson, Magellan Rx Management, Maxor National Pharmacy Services Company, MedData Services, Merck, Napo Pharmaceuticals, North Carolina AIDS Action Network, Partnership for Safe Medicines, Patient Access Network Foundation, Patient Advocate Foundation, Pharmaceutical Research and Manufacturers of America, Ramsell Corporation, ScriptGuideRx, Theratechnologies, ViiV Healthcare, and Walgreens.

Our top individual donor was yours truly. This year, I personally donated $9,241.22 to the organization. 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.

Photo Source: Innovation Compounding

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 14 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.