Information + Inspiration = Philanthropic Action?

posted on: November 1, 2012

By Lisa Ranghelli



Imagine this headline appearing on some news banner in the future: “No new HIV transmissions in the United States.” Now scroll down through the article in your mind. Where is the paragraph highlighting the role of philanthropy in achieving this milestone? What does it say?

Last week I had the good fortune to participate in a webinar on the topic of funding health care reform advocacy that supports people with HIV/AIDs. It was so inspiring it made me dream that such a headline might be possible some day. But then I came out of my reverie and remembered that so few foundations support the kinds of advocacy needed to achieve such monumental progress. Is it naive to think that philanthropy could play such a catalytic role?

The webinar, sponsored by Funders Concerned about AIDs, included three incredible speakers with whom I shared the virtual podium—an expert, a philanthropist and a community leader.

The Expert

Robert Greenwald, clinical professor of law and director of the Center for Health Law and Policy Innovation of Harvard Law School, gave a presentation that was both hopeful and alarming. He first demonstrated that even with full implementation of the Affordable Care Act, the needs of those with HIV/AIDS will not be served well unless state and national advocacy happen with much greater intensity.

In fact, the situation is at a crisis level. Nationally, roughly half of low-income people with HIV are not in regular care; 29 percent of people with HIV are uninsured, and they are falling through the cracks amid major changes to health delivery systems. In contrast,  Greenwald described the dramatic improvements in health outcomes for people living with HIV/AIDs in Massachusetts as a result of health care reform there (yes, the very same health care reform that then-Governor Mitt Romney signed into law and was partly the model for Obamacare).  As a Massachusetts resident with loved ones who have HIV, I was truly inspired by what has been accomplished here. This chart comparing state and national outcomes is an image that speaks a thousand words…and represents thousands of lives. 
One critical point Greenwald made is that the more people who are virally suppressed, the better their health and the lower the disease transmission rates. Thus, due to such high rates of viral suppression, Massachusetts’ diagnosis rates have plummeted by 25 percent from 2006-2009, while the national diagnosis rate increased by 2 percent in the same period. Moreover, the state estimates that these reforms reduced HIV health care expenditures by roughly $1.5 billion in the past 10 years. What an incredible return on investment in both lives (priceless) and dollars saved for the foundations that supported health care reform advocacy in Massachusetts.

As Greenwald concluded, if we could replicate these state-level outcomes across the country, we could someday envision an AIDs-free society in the U.S.

The Philanthropist

Nancy Mahon is senior vice president at M•A•C and Global Executive Director of the M•A•C AIDS Fund, the largest funder of HIV/AIDs causes domestically and chair of the Presidential Advisory Council on HIV/AIDS. M•A•C funds advocacy as well as services, with a focus on retention in care because for every person that receives care, another drops out of it. M•A•C supports gutsy causes like expanding access to clean syringes, which is proven to lower transmission rates among drug users, and helping LGBT communities in the Caribbean safely receive treatment in a highly stigmatized environment.

The fund’s approach is to support campaigns with a clear beginning, middle and end, which makes it easier to make the case to its trustees. Campaigns that advocate for a larger government role in service provision are a high priority, so that the foundation can devote its own limited service provision dollars to other pressing needs.

Mahon believes that the nonprofits themselves should drive partnerships and collaboration, not the foundation. M•A•C works out evaluation methods with the grantee, to achieve realistic indicators. Mahon noted that even if a campaign is unsuccessful, the knowledge gained in still valuable.

The Nonprofit Leader
John Peller is vice president of policy at the AIDS Foundation of Chicago (AFC), where his focus includes implementation of the Affordable Care Act and ensuring that new federal and state health care systems meet the health care needs of people with HIV; as well as Medicaid policy and other issues affecting the health of this population. Peller highlighted partnerships with three foundations—M•A•C AIDS Fund, Levi Strauss Foundation and Chicago Community Trust. These partnerships have allowed AFC to use creative communications methods to convey complex policy information, address root causes of the AIDS epidemic such as poverty and discrimination, and ensure the needs and input of people with HIV are considered in Illinois health care reform implementation.

Here is some of his advice for advocacy grantmakers: 

  • Be flexible and don’t expect policy change overnight. 
  • General support grants are always appreciated. 
  • Small grants of $10,000-20,000 can make a big difference for groups that already have advocacy capacity. 
  • Don’t feel you have to be the policy expert trying to master vast and complex systems—let your grantee be the expert.

Peller stressed the immediate need for funding for health reform in every state. He agreed with Greenwald that without advocacy, the needs of people with HIV will not be met by the new systems. That’s a call to action if ever I heard one!

The entire webinar is available here. And Funders Concerned about AIDs is holding an AIDS Philanthropy Summit on December 10 in Washington, DC.

Can you envision an AIDS-free society? And what role would philanthropy play to create it?

Lisa Ranghelli is the director of NCRP’s Grantmaking for Community Impact Project.