Activist Within Congress: Getting personal with AIDS champion Representative Barbara Lee

Rep. Barbara Lee (D-CA) is one of the best champions that ONE has in Congress. She’s met our ONE members several times, participated in last year’s World AIDS Day event with President Obama, Bono and Alicia Keys, and has been a pioneer in the U.S. response to the global HIV/AIDS pandemic.

In case you’re not familiar with Rep. Lee, she really is considered the go-to member in Congress in the fight against AIDS in Congress. No one has fought harder to bring HIV/AIDS to the forefront of the Congressional agenda and her record of accomplishments is a testament to her success. She has authored or co-authored every major piece of legislation dealing with global HIV/AIDS issues since she was elected, including legislation that created and the Global Fund to Fight AIDS, TB and Malaria and reauthorized the President’s Emergency Plan for AIDS Relief (PEPFAR)— two programs that our ONE members fight every day to protect and strengthen. On top of all that, she is on the UN Global Commission on HIV and the Law, working with the world’s greatest minds on how to beat the epidemic.

Rep. Barbara Lee, in red, at ONE and (RED)’s World AIDS Day conference in 2011.
Rep. Barbara Lee, in red, at ONE and (RED)’s World AIDS Day conference in 2011.

With the week-long International AIDS Conference happening in Washington this year, it was a particularly important time to think about AIDS — so who better to feature on ONE’s Stories page than the Congresswoman? Although she was insanely busy, she was kind enough to step out in the middle of votes on the House floor Capitol Hill to talk to us about her work, her life and her inspirations.

ONE: So, I hear it was recently your birthday. What was the most useful lesson you learned in the past year?

Rep. Lee: That elections have consequences.

You’ve been working on HIV/AIDS for a long time. What first “bit” you about this issue?

Way back in the day, in the late 80s, my political mentor, Maudelle Shirek, a woman who is now 101 years old, called me up one day. I was in the California legislature then, and she said that I had to get down to this rally on HIV/AIDS. She told me, “You’ve got to understand what’s taking place. Come down and see what it’s all about.”

I did, and it was an Act Up rally, and people were saying, “Let’s act up, and let’s get going on HIV/AIDS.” That taught me a lot. It took me less than 15 minutes to get it.


An Act Up rally in the 90s in San Francisco

What has kept you fighting against AIDS over the years? What is your most serious challenge?

In my autobiography, I wrote about how I was born. When my mother went into labor with me — in El Paso Texas — the hospital wouldn’t let her in because she was black. My grandmother, who was lighter skinned, fought to get her in the hospital. She needed a C-Section, and still they left her out there. Finally, after lots of confusion she collapsed and they raced her into the emergency room where I came to the earth via forceps delivery. Both she and I almost died.

As a child, I knew the story. I have no option. I nearly didn’t get here because of racism. I had to fight just to be able to breathe. So what else is there for me to do? My activism started that day, July 16 and I’ve been fighting ever since. So when people say we can’t win, I say “Yes we can.”

What was it like when you observed firsthand the AIDS epidemic in Africa?

It was the early 90s. It was at first very sobering and very sad. It was not really an eye-opener, but it was a real connection with real HIV-positive people, and I knew I had to do something for them to make sure that they could live. What could I do to help save lives and not let people suffer like this?

In some villages, there were men and women and children laying on the ground, two hours away from death. Once you see that, you’re never the same.

Dr. Bob ScottTell us about a remarkable person in the fight against AIDS, from the past and present.

Dr. Bob Scott (pictured left), who cofounded the Allen Temple Baptist Church AIDS ministry in Oakland. He was so key in getting the African-American church in the Bay Area focused on AIDS, both in the community and in starting an orphanage in Zimbabwe to care for AIDS orphans. He deserves a lot of credit. He has since passed away and stays with us constantly.

Last July we witnessed the International AIDS Conference (IAC) return to the US after nearly two decades, following the repeal of the HIV visa ban. What did it mean for the global fight against AIDS that the US once again hosted this conference?

It meant a triumph over discrimination. Denying people the right to come to the United States because they have AIDS is the worst kind of stigmatization. Stigmatization in the AIDS pandemic is deadly because people are more likely to hide their illness and not seek treatment or tell their partners about their status- which increases the risks of spreading the virus. It also drastically affects the morale of HIV people if they have to keep their illness a secret for fear of repercussions. With the conference finally returning to the United States, we were able to speak about our domestic epidemic in the context of the global crisis. Now that the ravel ban is out of the way, we now must turn to modernizing HIV criminalization laws and policies that plague over 30 states and U.S. territories.

What did you hope would be achieved at the IAC?

My hope in bringing the AIDS conference back to the United States was that it would help to contextualize our domestic AIDS epidemic within the global struggle. The AIDS Memorial Quilt also came back to Washington and people from all over the country and the world had a chance to go see it on the national mall and remember and read the names of Americans who have died from this disease, and recognize that we we’ve come a long way from the time when there was no hope and no medicine for AIDS, to people living more than twenty years with HIV.

At the ONE and UNAIDS et al celebration at the Kennedy Center, you joined hands with former Senator Norm Coleman to recount the history of bipartisan leadership in the U.S. Congress on fighting global HIV/AIDS. Are you optimistic about continued bipartisan support for PEPFAR and the Global Fund, given the fiscal and political climate?

Yes, I am. We have a bipartisan and bicameral Congressional HIV/AIDS Caucus that is very active on these issues, and will continue to be on the forefront.

What was your one wish for this World AIDS Day?

For the 113th Congress to be the one that put our country on course for ending HIV/AIDS—at home and abroad. We have the opportunity to be the Congress that chooses compassion over discrimination and remind the world that this is a country of exceptional character, a country that chooses to pursue a future without AIDS.

Do you believe that we can achieve the “Beginning of the End of AIDS” by 2015? If so, what will it take and what can ONE Members and other activists to help make this happen?

We know how HIV is transmitted, we know what allows it to spread, and we know how to address those issues. In some cases, we’re just not doing it. That is where our opportunity presents itself. We have to be smart about how we use our resources, and that means responding to the reality of HIV and not the luxury of our political comfort. We also have to put an end to the stigma and discrimination that fuel the spread of HIV. We need to equip everyone with the knowledge they need to stay healthy, and that begins with taking a look at the conditions that give HIV the upper hand, starting with poverty, homelessness and gender inequality.

Tell us about your doll collection!

Yes, I do have a doll collection -– I love them! My dad and granddaddy bought them for me when I was growing up, and they were always all over my house. I buy them when I travel, both male and female. Sometimes I see myself in them. I love the dolls with the big hips. They’re women of all cultures and races and religions. I just love their outfits. I love them!