Meet Agnes Nyamayarwo, the Woman Who Inspired Bono

Everyone knows the story of Bono: Irish boy made good through his rock band U2, made even better by his relentless attempts to raise the profile of HIV/AIDS and poverty around the world. But what about the woman helped inspire him to action in the first place?

Her name is Agnes Nyamayarwo. She's a Ugandan nurse and activist, one who's spoken to literally thousands of people around the globe about how HIV has changed her life. She's traveled across the United States, shaken rooms with her story and shaken hands with the likes of President Bush.

But prior to meeting Bono, she thought of herself mostly as a mother -- and as a widow, far removed from the hope of Lazarus-like drugs that a seemingly magical country like the United States could offer.

It was 2002 when the rock star came to Uganda. A decade before, Agnes had lost her husband to the ravages of HIV/AIDS. By that time, she had already mothered 10 children, and was standing on the precipice of their responsibility and her own burden of disease. What's more, her oldest son had run away, after refusing to speak to anyone for days after his father's death (never to be heard from again). Her youngest son, Christopher, had also developed HIV/AIDS.

Christopher's case started out mild enough: just some casual sickness. But the illness wouldn't go away. "It was really very bad for me," says Agnes, in a recent interview with Change.org. "I had that guilt of knowing that I passed the virus to my little boy."

Christopher died in the spring of 1995, just a few years after he lost his father. It was a period of desperation for Agnes -- but also one that, as a mother, galvanized her into action. She started volunteering as a counselor with a local support organization, TASO, which had helped her and her husband. She was, she says, determined to reach out to families that would otherwise suffer her own burdens: "[Christopher's] painful death, with all the pain of AIDS...There are so many other parents who go through what I'm going through."

Still, though, by the time Bono arrived in Uganda in 2002, she wasn't interested in meeting the rock star (who planned to visit TASO as part of his tour). She was exhausted. Her white blood cell count was low. "People used to call us 'lean people,'" Agnes remembers, "people who have all their flesh but are walking skeletons." At TASO, patients tried to collect food for each other and share consolations, but were frequently too weak to rise from their mattresses. A drama group brought occasional cheer to those present. Discrimination, says Agnes, was "very high."

She mustered the strength and went anyway. By then, TASO -- which had started as a humble support network -- knew about antiretrovirals. They knew that some rich Ugandans were buying them, and also that none of their group could afford them. "We knew America is a great country, and we knew with America we could maybe get saved, we knew most of the medications come from there," Agnes says now.

Agnes remembers exactly what Bono said after he entered TASO's compound. "He asked, 'Where do you get the courage? [Do] you people have life-prolonging medicine?' We said, 'No.' But we said, 'We want to save a few lives before we die.'"

This was 2002. President Bush hadn't yet announced a plan to launch the President’s Emergency Plan for AIDS Relief (PEPFAR). Skepticism that Africans could successfully adhere to a complicated drug regimen was rife. "Americans thought that without wristwatches, we couldn't take drugs," says Agnes. ("But we have the sun, we have family who makes sure we take our medicine on time.")

Bono invited Agnes to fly out to the U.S. as his main African spokesperson on the issue, and for the first time, she found herself boarding a plane to speak as a key part of Bono's "Heart of America" tour. At gatherings across the country -- starting in Lincoln, NE -- Agnes says she was surprised by the outpouring of support that embraced her. In the Midwest in particular, she remembers, "they were really good people and I could see passion in them. They were kind but they were not aware -- they didn't know how bad the situation was in Africa."

Now, of course, it's been over seven years since Agnes toured the U.S. Out of Bono's immediate limelight, she's returned to work as a board member for TASO, which has since developed into one of the continent's biggest peer-to-peer support networks. She's seen the lives saved through the PEPFAR program, which Bush launched in Jan. 2003. But as Obama's support for PEPFAR appears to be tapering (compared to the Bush years), she's not waiting around. Globally, there are strong fears of a post-recession fall in HIV/AIDS funding; meanwhile in Uganda, rates of HIV/AIDS aren't experiencing the same precipitous slide.

But back at her home, her children -- once frightened by their mother's high-profile visibility in their community -- are now supportive of her efforts. They understand why she's become so outspoken. "We have to educate people. I told them, this is the only way we can save more lives," says Agnes. "Eventually, they accepted, but it was not easy for them."

In the meantime, Agnes continues her work, criss-crossing Uganda to support women through her latest initiative, the Mulago Positive Women's Network (more to come on that soon). She's glad that she was able to help inspire Bono and much of America. She also knows, though, that's just a start.

**Many thanks to Change.org member Debbie Kreuser for her assistance facilitating my conversation with Agnes.

Photo Credit: Debbie Kreuser