On Sept. 24, respected journalist Mark S. King published a powerful article, "Gilead Duped Me into Being Their Mouthpiece. Here's How," about a recent experience in which he was asked by a national HIV organization, AIDS United, to write an editorial for what turned out to be a project initiated by and funded by a pharmaceutical company, Gilead Sciences, that was aimed at influencing the market for their products.
In that article, King asks, "How do we coexist without being exploited, and why do we allow [pharmaceutical companies] to buy our silence?"
King's article refers to a specific company, Gilead Sciences. Gilead sells three of the four most widely used HIV medicines and rakes in over half of the $28 billion in all global revenue from selling HIV medicines. Gilead is also the leading source of philanthropic funding for HIV organizations in the United States. In 2017, according to Funders Concerned About AIDS, Gilead gave out over $155 million in 944 HIV-related grants, including to community-based organizations that struggle to raise sufficient funding from government or other sources. That's a lot of potential influence from one company.
King's article is also about AIDS United. AIDS United is an important organization in the U.S. HIV effort, providing grants, technical support, and policy and advocacy support to hundreds of community organizations and advocates. In his article, King alleges that AIDS United: (1) has a Gilead representative on the AIDS United Board of Trustees, permitting Gilead to have influence over the strategic directions of the organization; (2) partnered with a Gilead-funded public-relations company as the coordinator of an AIDS United media communications effort; (3) didn't tell a participating activist (King) about the link with Gilead; and (4) has not criticized Gilead for its misleading and possibly illegal communications and marketing tactics.
Cue the outrage or cynicism. Easy, in this age of social media.
But this article is a signal for work to be done.
The first area of work is funding. Important HIV organizations are struggling to fund their work. HIV organizations should solicit and accept donations from Gilead and other pharmaceutical companies as long as they maintain boundaries between their funders and their work. But in addition to raising funds from known channels of funding, we need smart policy work and fundraising work to generate new funding from government agencies and a range of philanthropic funders so that Gilead isn't the largest philanthropic funder in the U.S.
We also need better practices to control potential conflicts of interest. Good, standard practices and template forms exist in other related fields, such as medical research and journalism. These practices and forms could be adapted. HIV organizations could routinely disclose donor affiliations that could be an influence in any contract or grant. Consultants could routinely disclose donor affiliations that could be an influence in their work. Advocates and writers could disclose donor affiliations that could be an influence in their writing and presentations. Routine disclosure would be an important first step in controlling undue influence from any major donor.
As personal disclosure, and to tell a story: I've been a freelance consultant for 20 years. During that time, I've worked for at least 30 organizations. I've never worked for Gilead, but I have worked for Pfizer (2002-2005), Johnson & Johnson Charitable Contributions (2006-2008), and Merck (2013). For many years, every six months, I would send a list of all of my active contracts to all of my consulting clients. I did this partly out of marketing self-promotion (see how busy I am and what else I'm working on), but also out of transparency (please know the other agendas and hats I have). No one minded it, and it was easy to do.
But there's no standard practice in the field, and I fell out of the habit of regular disclosure -- it felt unnecessary and too self-promotional. On one occasion, in 2013, advocates working on access to hepatitis C medicines were furious to learn that I had been working for Merck and hadn't let them know. And they were right. My lack of disclosure threatened the confidentiality of advocate strategizing and undermined trust. It also meant that I didn't get to hear the advice and insights of friends and colleagues who knew far more than I did about the company I was consulting for. Disclosure matters. Lesson learned.
It's not easy these days to figure out the influence of a pharmaceutical donor. In recent years, I was a consultant for the Elton John AIDS Foundation (EJAF). In 2017, EJAF received and announced a multiyear Gilead Sciences grant of over $10 million, representing over 20% of EJAF's annual revenue and grant making. To EJAF's credit, Gilead does not serve on EJAF's Board of Trustees, EJAF raises funds from a diversity of sources, and Sir Elton has a good reputation for providing honest critique of anyone and anything if he has a mind to. Still, Gilead is one of the world's largest philanthropic funders in HIV and -- unlike, say, the Bill & Melinda Gates Foundation -- has for-profit motives. Could Gilead funding have influenced what Sir Elton John said at the 2018 International AIDS Conference? If I was supporting EJAF's communications at AIDS2018, was I, in effect, working for the interests of Gilead? My point is that determining influence is not always clear. We have work to do.
In summary, I write all of this to applaud Mark S. King for his article and to call for discussion. The power of our collective HIV response depends on the diversity of our perspectives, honestly and independently expressed. We need to protect that diversity, honesty, and independence, and fully fund it.