Thursday, April 26, 2018

Our Commitment to Transparency

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

Transparency is a word often used, but equally often abused. A prime example is what transpired with the now defunct National Association of People With AIDS ("NAPWA"). Since the birth of the ADAP Advocacy Association in July 2007, transparency has been a core guiding principle of our organization and its advocacy activities. Personally, I take great pride in the fact that we share an abundance of information  including financial information  about our organization with stakeholders.

Ironically, I had planned to blog about our commitment to transparency, but that decision was reinforced after a (contentious) conversation with a colleague whom I respect, but disagree with from time to time. In an era where "facts" are often fake, these facts are indisputable.

Photo Source:

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.

The ADAP Advocacy Association receives no taxpayer funding. All of our revenue is generated from individuals, corporations, foundations, and nonprofit organizations.

In 2017, our revenue as reported to the Internal Revenue Service was $279,392.39; it was derived from numerous sources  including corporate partnerships, awards dinner sponsorships ($1,000.00), conference registration fees ($199.00), training fees ($50.00), exhibit fees ($1,000.00), scholarship fund donations (ranging from $5.00 to $5,000.00), and miscellaneous donations. Approximately 68.61% were donations received from pharmaceutical companies and/or affiliated groups. That means $87,702.39 of our funding came from non-pharmaceutical sources. As the organization's CEO, one of the goals over the last decade has been achieving greater funding diversification because it is consistent with a sound business model.

That said, our top five pharmaceutical funders last year were Gilead Sciences (12.35%), Merck (11.63%), Janssen Pharmaceuticals (9.31%), ViiV Healthcare (8.59%), and AbbVie (8.05%). Our top five non-pharmaceutical funders were AIDS Healthcare Foundation (4.01%), Community Access National Network (3.76%), Ramsell Corporation (3.58%), Walgreens (3.58%), and Housing Works (1.79%). In total, we garnered the financial support from thirty-three (33) corporate entities (which was our best year to-date).

Our top individual donor was yours truly. Last year, I personally donated $16,119.65 to the organization.

The first few years after we launched the ADAP Advocacy Association, pharmaceutical company donations accounted for approximately 90%+ of our annual revenue. We never once hid this fact. The only non-pharmaceutical revenue came from the Oakland, California-based Ramsell Corporation. Our first pharmaceutical partner was Janssen Therapeutics (then, Tibotec Therapeutics). Today, one in every three dollars is generated from sources outside of the industry.

Over the years, we've approached countless corporations, foundations, and organizations seeking their financial support for our efforts to increase access to care and treatment for people living with HIV/AIDS. Each one had a history of supporting HIV-related initiatives.

We've been declined by the Elton John Foundation (numerous times). We've been declined by the Ford Foundation (numerous times). The Robert Wood Johnson Foundation declined, as did the Walmart Foundation. Chevron was a strikeout. Kenneth Cole Productions, nope. Macy's was another flop. Target Corporation, too. And Levi Strauss & Co. And Starbucks (note: on several occasions Starbucks donated $5 gift cards for our conference bags). Now that my pride is wounded sharing only a handful of the letdowns, there should be a clearer picture painted for any remaining doubters about our attempts to achieve funding diversity.

The reality is simple. Without financial support from our pharmaceutical partners, small patient advocacy organizations could not and would not exist...including ours! I'm not ashamed or embarrassed by the support from our pharmaceutical partners, or the support from the many other funders either. Ironically, we've been criticized numerous times by other advocacy groups for accepting financial support from AHF. I'm also proud of the support that their organization has lent us. In fact, we proudly listed every single corporate donor in last year's blog, 10 Years of Accomplishment, Advocacy & Access to Care.

Some of our non-industry funders have included Bender Consulting Services, Flowers Heritage Foundation, Great Lakes ADA Center, MedData Services, Philadelphia FIGHT, Public Sector Solutions, Southwest Airlines, SunTrust Bank, and Wells Fargo. And yes, we have received considerable support from our pharmaceutical partners — and their support has been equally valued.

In fact, in the 11 years since our Articles of Incorporation were filed in the District of Columbia, not once has a pharmaceutical company demanded or requested a quid pro quo in return for its financial support. Let me repeat...not once!

...demanded support for pending federal or state legislation? Nope.

...nudged us to oppose potentially harmful regulation to the pharmaceutical industry? Never.

...requested allegiances for pro-big Pharma policies? Not even that one.

And let me be equally clear, on occasion the ADAP Advocacy Association has taken a very public stand on issues contrary to our pharmaceutical partners, and again...not once did a single one of them retaliate by withdrawing support. Therefore, speaking alone for our organization there is no direct or implied payback, or conflict-of-interest established by accepting their support.

Respect is earned, and our organization has earned the respect of its funders because they recognize the valuable contributions we make to patient advocacy. And...we will continue to do so. Case closed...

Respect is earned not demanded or bought
Photo Source: Keep Calm Network Ltd.

1 comment:

Jen Laws said...

I think there are sometimes many false impressions and flat out myths around how funding works for advocacy organizations and charitable non-profits.

We know we are not the only organization that receives project based grant funding or direct sponsorships from Pharma corporations. Especially in HIV, Pharma sponsorships and grant funding provide necessary resources our government simply won't fund and our communities can't afford. Pharma corporations are important partners in our advocacy, not immune or even avoidant of criticism from patient advocacy organizations. Our's is a dynamic relationship with these corporate sponsors, often with these sponsorship funds being the vehicle in which patient advocates can deliver direct, constructive criticism to these partners on filling gaps on research and development of programs to better meet the, partnering on lobbying work, and working to better understand where we have failed. Very specifically, we see these types of dynamic conversations at our annual conference where Pharma sponsors send liaisons to discuss concerns with our community and advocates. Health departments and government are loathed to admit failures due to punitive funding designs and Pharma corporation funds help us better understand where we have room to improve, reach more patient needs, and bring light to failures government is happy to overlook in the name of "looking successful" in combating the epidemic.

Additionally, Pharma grants tend to go the way of "clearing houses" (think AIDS United) to limit influence among community based patient advocacy projects. Pharma is not unaware of the power of funding and often seek unaffiliated partners in disbursement in an effort to minimize fear of funding losses influencing outcomes or final work products.

While there's certainly room to improve the culture of access to care due to high costs of medications, our experience has not been one where Pharma seeks to "shut us up" but of an urgent desire to talk about the nuances of that process and funding being an honest commitment to empower advocates and create more access for grassroots advocates to become engaged in that conversation. Our experience has been one where Pharma sponsors have "put their money where their mouths are" quite literally with regard to their statements on a commitment to community.

We aren't saying "love Big Pharma", we're acknowledging that "partners" don't always agree on approach, sometimes have competing interests, and, just like with interpersonal relationships, the nature of being a true "partner" means having hard conversations and sharing an investment in a specific outcome.

-Jen Laws