HIV/AIDS Part 3: Philanthropy

Photo Credit: famousphilanthropists.com

To mark the 30th anniversary of the first AIDS diagnoses, we’ve been discussing the different groups that came together to improve our understanding of HIV/AIDS and develop new treatments for combating the disease. I’ve written about scientists and advocates in my previous posts for this series, but we’re not done yet! Research needs money and philanthropists were the first to step up to do their part in the fight against AIDS.

Today, the federal government spends over $15 billion every year on HIV/AIDS programs and research. However when AIDS first emerged, the government was not quick to respond. Early donors did not even include foundations, but rather individuals who were personally invested in the epidemic. This probably had a lot to do with the stigma associated with a disease that primarily affected the gay community and intravenous drug users.

Those first donors were really important, because together with advocates, they were able to put a face on the disease. Foundations took notice and realized that HIV/AIDS was a major public health challenge that the federal government was not addressing. In 1986 the Robert Wood Johnson Foundation announced that a significant portion of its annual budget would go towards HIV/AIDS programs and research. They were quickly followed by the Ford Foundation which helped to create the National AIDS Fund (NAF, now AIDS United). New foundations were also created specifically for HIV/AIDS research, like the American Foundation for AIDS Research (amfAR).

Apart from funding research on HIV/AIDS, philanthropists were able to help shift public perception of the disease. They could use their name recognition to funnel funds into community-based programs that would otherwise have been invisible. The resulting public support led to political pressure, which led (finally!) to government investment.

You might think that once big federal dollars are part of the equation, we wouldn’t need HIV/AIDS philanthropy anymore. Actually foundations still play an important role in dealing with this disease, especially in the global health arena. Along with the early champions, newer organizations like the Bill and Melinda Gates Foundation are spending significant resources on fighting the global AIDS epidemic.

Working Together for HIV/AIDS Cures: Advocates

Photo Credit: Amaury Laporte

In my first post in this series, I discussed how scientists and physicians worked to better understand and find new treatments for HIV and AIDS. Scientists didn’t act alone though. Advocacy groups have been and continue to be central to the progress in this field.

Here at New Voices we mainly focus on advocacy, but what does effective advocacy entail? According to a new report by FasterCures and HCM Strategists, the fight for HIV/AIDS patients provides a powerful model for other advocates to follow. This strategy includes 1) attention, 2) knowledge and solutions, 3) community, 4) accountability and 5) leadership.

Bringing attention to the plight of AIDS victims was the first step toward advocating for them. Groups like the AIDS Coalition to Unleash Power (ACT UP) staged protests in front of government agencies like the FDA and the CDC to raise awareness among administrators and the public regarding the human cost of this disease.

While the theatrical nature of street protesting helped advocates grab the spotlight, they also needed their concerns to be taken seriously. That’s where knowledge and solutions came into play. HIV/AIDS activists educated themselves with the help of researchers like Iris Long about the science behind the disease and the complexities of government processes. This allowed them to identify specific problems they wanted solved, like changing the definition of AIDS to include symptoms that are unique to women or intravenous drug users so these groups could receive government health benefits and pushing the FDA to speed up the approval process for potentially lifesaving therapies.

A third element in HIV/AIDS advocacy was the emphasis on community. Groups like ACT UP and Project Inform brought together people who were suffering from AIDS and the stigma associated with it. There were lots of meetings and events incorporating fun with these serious issues. People are social beings after all and these get-togethers helped to strengthen personal relationships and community ties.

Finally, accountability and leadership go hand in hand. Advocates followed through on their demands, holding policy makers, scientists and regulators accountable for their promises. They did this by singling out "champions" within these three groups who would act as leaders in AIDS policy and research. These groups also identified leaders in the advocacy community to step up to act as unifying voices for their movement.

What might advocates for health-related research learn from the work of groups like ACT UP?

Working Together on HIV/AIDS: Scientists

Photo courtesy of the NIH

This year marks the 30th anniversary of two mysterious outbreaks in America. One was of a form of pneumonia called Pneumocystis carinii pneumonia (PCP) and the second was a skin cancer called Kaposi’s sarcoma. Both diseases were quite rare, especially considering the patients were all young men in their 20's. These outbreaks actually marked the beginning of our awareness of a new disease we now know as AIDS.

Today’s post is the first in a series about HIV/AIDS, including where we were and how far we’ve come in treating this devastating disease. However, I’m not planning on focusing on the science behind HIV/AIDS since others have already done a great job of explaining this.

Instead, I want to talk about the different groups that were involved in the amazing progress we’ve made in our understanding and treatments. In just 30 years, HIV/AIDS has gone from a death sentence to a manageable chronic disease. Who made that possible?

The first answer that probably comes to mind is scientists and physicians who had to figure out what caused the symptoms they were seeing in clinics and how the disease was spreading. This was a daunting challenge, but with the support of the US government as well as governments around the world, they identified the Human Immunodeficiency Virus and figured out how it was transmitted.

Almost two decades before the emergence of HIV/AIDS, scientists had the idea that cancers might be caused by a special type of virus called a retrovirus. They developed a drug against retroviruses in the hopes that is would cure these cancers. Unfortunately it didn’t work. But, HIV is a retrovirus, so they were able to revisit their old drug. The drug, AZT, appeared to slow the progression from HIV infection to AIDS and represented the first major breakthrough for infected individuals. Not bad for a failed experiment!

Since then, science has produced several other drugs to treat HIV/AIDS and many people are living long and symptom-free lives as a result. But scientists didn’t work alone. In my next post in this series, I’ll discuss the crucial role advocacy groups played in fighting this epidemic.

Mother's Day Round-Up

Here's the news we thought was interesting from around the web this week:

Thought-starters
Since we mentioned Teacher Appreciation Week, this piece where Dave Eggers and Nínive Clements Calegari take on what low salaries for teachers may be costing us in the opinion section of the New York Times caught our eye.


And speaking of the Times, here's a response to an article regarding funding for public health.

Research

Basic research is important not just because it drives the economy. It also helps make good things even better, like an HIV drug that could prevent cervical cancer.

And sometimes research coincides well with the major news story of the week, such as how DNA may have confirmed Bin Laden's death.


Folks We Love to Read
Hooray for New Voice Jaime Vernon, PhD who's subbing in for Chris Mooney over at The Intersection.

Folks We Love to Love

Our moms.

Happy Mother's Day!