Member Spotlight: Shepherd Smith

The Global AIDS Policy Partnership is made stronger by each of the contributions of our 70+ members. That is why we wanted to highlight the unique stories and invaluable contributions of each of the individuals and organizations that make up our community through a new blog series.

Fittingly, our inaugural post features someone who has been on the front lines of the fight since the earliest days. Having been in the very rooms where the President’s Emergency Plan for AIDS Relief (PEPFAR) was created, Shepherd Smith has a unique perspective on the program’s impact and reauthorization. Hear what he has to say in the following interview:

How did you become involved in the fight against HIV/AIDS?

My father was a doctor with a public health degree, and he encouraged my wife, Anita, and me in 1985 to start an organization that would address HIV/AIDS as a medical public health issue. We started something called Americans for a Sound AIDS Policy (ASAP). The acronym was intentional.

At the time, the U.S. military was really the primary entity utilizing HIV diagnostic tools. They had a number of families who were affected and needed to have a children’s assistance fund to help. We started the organization which ultimately became the Children’s AIDS Fund International to support them.

Can you talk about some of the work you did that you feel made a difference?

In the early days, it was very difficult trying to get families to share their stories. If a husband was infected, they didn’t want to tell their wife, and they certainly didn’t want to tell their children. Or if they had an infected child, they didn’t want to tell their other children. Getting people to disclose their status in that environment was very difficult but very rewarding.

We had a grant from the CDC to reach the faith community. When there was an affected family in a church, we would go to the church at their invitation and spend a whole weekend educating the leadership and the congregation that the family didn’t pose a threat to them. The family would choose whether they wanted to disclose their status to the church. Nearly every time they did and were embraced by the whole church body. It was a really wonderful experience.

We also did things like arguing for inclusive surveillance reports. In the beginning, the classifications of people who were infected were gay men, injection drug users, gay men who were injection drug users, and heterosexuals. The only way you could be listed as a heterosexual is if you knew the person who had infected you was HIV positive. You ended up, particularly in communities of color, with those people being put in the “No Identifiable Risks” category. When they distributed money for prevention or treatment or anything else, those folks were left out. And that was grossly unfair. Probably 90% of the families we were working with were from communities of color. We fought for fairness.

From an advocacy standpoint, we got to know the staff and the people in Congress who had a real interest in the issue and built strong relationships with them. When Republicans became the majority during the Clinton Administration, we were a conduit for their information.

How did you expand from focusing on HIV/AIDS in the U.S. to the global response?

We worked a lot with private industry. One of the companies we were working with partnered with a biotech company in South Africa and wanted us to meet them. In 1995, we traveled to South Africa, and then to Malawi where they were doing a clinical trial. It was really eye opening. Across the board, people were dying of AIDS, regardless of whether they were poor or wealthy.

When we went to Bethesda House, which was run by the Salvation Army for HIV positive kids, our driver parked his car four blocks away because he didn’t want to be around AIDS. That was the environment at the time. We made a commitment then to go back to Africa and see what we could do to help.

On our next trip, we met an amazing doctor in Uganda, Elioda Tumwesigye, the chair in parliament of the first AIDS Committee.  He became our inspiration to do more than we thought possible.

What has the role of the faith-based community been, historically, in the fight against HIV/AIDS?

In the early days, churches and Christian schools were not letting HIV positive kids or infants into their Sunday or day schools. I think that propelled us as much as anything to become involved. And that situation changed rapidly after our involvement. Houses of worship are found in every city and town in the U.S. and around the world. And they became a refuge for countless numbers of people affected by HIV and AIDS.

When PEPFAR was being created, Health and Human Services Secretary Tommy Thompson took a group of 25 people to Africa in March of 2002 to evaluate what sort of health assets existed. We were one of six non-government people on that delegation. We went to five or six countries and easily the best health facilities were faith-based. At the time, WHO did a study showing that 40% to 70% of all healthcare in Africa was provided by the faith community. It was important to be of faith and to be able to interact with these faith entities.

We subsequently put two more delegations together later that year. We wanted to better understand why Uganda’s new infections were declining where every other country was seeing their rates increase. We tried to have people from all sides, not just conservatives, not just people of faith, but people that would give an objective view. People can be objective, whether they’re on the right or left. They’re rare these days, but they exist.

In Africa there were, and still are, so many missionaries. They were there before USAID even became an institution. You have an advantage, in the faith community, of a network that already exists that can give you good information about what’s on the ground and what’s happening.

PEPFAR is up for reauthorization this year. What are your thoughts on that?

Reauthorization this year is a real conundrum. Some of the things being said are simply untrue. There are people saying that they want to make sure “PEPFAR is protected.” But it is already protected, legally. It has never been a source of funding for the things they are concerned about.

We have been working around the clock to explain the damage that will be done if we don’t have a clean five-year reauthorization. I respect the leadership in Congress working on this; and hope their legacy won’t be one of killing thousands or even millions of people. Everybody we’ve talked to in Africa is getting worried about reauthorization and what might happen.

Why was it important for you to become a member of the GAPP?

GAPP members want to help others. Everyone there is well intended. We never question peoples’ motivations. We take people at face value for what they say they want to do. In the GAPP, you have people really trying to do good things.