FCAA Funder Spotlight: The Campbell Foundation

As FCAA’s most recent resource tracking report shows, we have seen a trend of funding decreases among leading HIV funders. But there are a group of funders going against the grain. In 2016, 67 private funders collectively increased their HIV-related philanthropic giving by $82 million. To honor their commitment, FCAA is shining a spotlight on a few of these organizations. To start, we spoke with Ken Rapkin, Executive Director of The Campbell Foundation.

Tell us about your organization and its mission.

The Campbell Foundation was the vision of Richard Campbell Zahn, a renowned chemist who developed Herpecin-L Lip Balm for the treatment of cold sores and fever blisters. He established and operated Campbell Laboratories in Fort Lauderdale, FL, which manufactured and sold the lip balm. Prior to his death in 1995, Richard was very vocal with his inner circle about the fact that the government was ignoring the AIDS crisis. He viewed himself as one of the lucky ones who had the resources and was, therefore, able to fight the disease even in the days before antiretroviral therapy was available. However, without the therapies we use today to fight HIV, Richard’s diagnosis was still a death sentence.

Richard envisioned a future that was very different; one where medical advances found an effective way to fight the epidemic and, ultimately, to cure it. His wish was for the proceeds of the sale of his company to create The Campbell Foundation, an organization with a mandate to fund cutting-edge research to discover a cure for HIV.

At the time of Richard’s death, there was no Bill & Melinda Gates Foundation. The National Institutes of Health weren’t really doing much research on HIV. In fact, there were still people who denied that HIV caused AIDS. Even in that unfavorable climate, the researchers The Campbell Foundation supported were getting traction. That’s why we refer to our work — funding groundbreaking research in the lab — as “Madam Curie in a closet.” We want to help these scientists make progress. When we began, we were one of the only organizations focused on funding research.

We quickly realized, though, that while researchers were doing what they did — in their labs and out of the limelight — people still needed to live. So we instituted programs like our “holiday hugs” to provide support for non-medical related areas – housing, food, counseling and education. We give 10 unrestricted grants of $5,000 each to organizations working to meet these needs. Funds like these are so crucial in our hometown of South Florida, which is the epicenter of HIV.

What has the impact of your funding been, over time?

Since 1995, The Campbell Foundation has used its initial endowment and donations to fund alternative, nontraditional avenues of research that will have direct clinical impact to the HIV community within five to seven years. Over the last 23 years, we have awarded almost $11 million.

What are some of the challenges you see facing the HIV/AIDS fight today?

We are still fighting for an ever-shrinking pot of federal dollars. That creates a huge brain drain – scientists don’t want to deal with the resource constraints. But the problem extends beyond research. If you have HIV, you don’t just go to a general practitioner; you go to someone who specializes in infectious diseases. We need doctors who specialize in this area and understand the comorbidities that are affecting people living with HIV, and who realize that HIV brings on faster aging and comes with associated neurological disorders.

Today, people haven’t grown up seeing men walking around with purple lesions or attending funerals every day. I’m glad that is the case, but it takes away some of the immediacy of the need. The progress that we made is a double-edged sword. People forget that, while it may no longer be an immediate death sentence for most of us, you can die from other things that are related to HIV. That is why a big part of the foundation’s work is building awareness with the general public that AIDS is not over.

As reported in FCAA’s most recent resource tracking report, despite an overall trend of decreased funding, your organization actually increased funding for HIV/AIDS in 2016. At a time of great need and many competing priorities, can you tell us why your organization views it as critical to maintain a focus on this issue?

There is still no cure for HIV and AIDS. It is the most crafty, changing virus that the medical field has ever seen. Nothing exists to combat certain strains in some parts of the world. I once asked a researcher why that is not the case here in the U.S. and he said, “Because we’re lucky.” The majority of what we see in the U.S. is one particular strain, which we now know how to fight. That is not the case everywhere. Diseases know no borders, so it’s entirely possible that our luck may run out at some point. Beyond that, there are people living in other regions of the world for which HIV is still a death sentence. That is unacceptable.

Thankfully, the greatest brains of our time are still working on this. If we had the funds, The Campbell Foundation could be writing checks all year long. In one grant cycle last year, we had 38 letters of intent from all over the world – people doing serious, elite research. We were able to invite 13 grantees to provide a full proposal. But there is so much more work to be done and funding needed to support this critical research.

Why is it important for you to participate in FCAA’s resource tracking initiative?

We want to make sure that our voices are heard. Isn’t it a little shocking, in a way, that our foundation, given its size, is even on this list? That’s a pretty big message. Thank goodness for the Gates Foundation and amfAR, but they can’t fund everyone. We need more funding in this area. Being involved in FCAA is a way to make our message more tangible. It’s a very valuable tool to help foundations and to help educate the general public.

You have been a member of FCAA for several years. What do you view as the greatest value from this community?

FCAA can bring awareness at a much grander scale than the foundation can do on its own. It’s very helpful for us to be able to tell our stakeholders, “Hey, these other organizations (other FCAA members) are in the fight and they are heavy hitters!” The Campbell Foundation is proud to belong to an affinity group that can represent our community at a national and global level. We are honored to be making AIDS history by helping FCAA keep track.

How do you think our community could best reignite our fighting spirit?

We have to fight stigma. The day the first baby got AIDS was the day that it was no longer a “gay disease.” AIDS doesn’t care who you are, but stigma keeps driving it under ground and preventing people from getting care.

We have to tell our stories, engage funders, talk to the media and tell everyone “AIDS is not over.” We’ve got to keep up the pressure, do the things that the government can’t or won’t do, and build awareness. Richard’s vision is still within reach. I believe not only a cure, but an end to AIDS is possible.