TB Patient Activist Lucy Chesire Shares Her Story in DC


October 14, 2009
by Crickett Nicovich

Crickett Nicovich and Lucy ChesireLast week there were 45 people sitting in my living room listening like school children to their teacher at story time. Our teacher was Lucy Chesire, the first Kenyan woman to come out as an HIV-positive healthcare worker in her country in the mid-1990s. She works with KANCO — Kenyan AIDS NGO Consortium — a partner organization of RESULTS. Lucy is an internationally-known patient advocate for HIV/TB and has first-hand experience with the deadly synergy between these diseases. In 2000, she spent seven months in a hospital fighting tuberculosis. Lucy had TB of the lymph nodes and underwent three surgeries because the doctors couldn’t properly diagnose her. Her weight dropped to below 70 pounds. They knew she was HIV-positive, but the diagnostics for testing for non-pulmonary TB (TB not in the lungs) have not changed in the past century — so they didn’t recognize that while she was living with HIV, she was dying of TB. Those surgeries and the antiretroviral drugs provided by PEPFAR funding are what kept Lucy alive.

I got to be a bit of a tour guide for her during her time in DC this past week and got to sit in on some of her meetings. At every meeting she told her story — and the story of one-third of the world’s population who are infected with tuberculosis. She had quite a busy schedule.

Lucy told her story on Capitol Hill where other TB advocates from Bangladesh and India joined her for a briefing with foreign affairs staffers who work on global health issues. She also shared her story with Rep. Nita Lowey’s office. Voice of America interviewed her for VOA Swahili. Lucy even went to Greenville, MD, and shared her story with the Prince George’s County RESULTS activists at an outreach meeting in their local community center. Later, she went back to Capitol Hill with activists Pat Behenna and Ed Greville to meet with Nate Graham in Rep. Donna Edwards’ office. This meeting helped to convince the aide to get Rep. Edwards to sign on to a House letter to the President requesting that the administration ask appropriators for $1.75 billion in funding for the Global Fund to fight AIDS, TB, and Malaria in FY 2011!

I realized after spending the better part of a week with Lucy what makes her such an outstanding advocate: her ability to relate her personal story to the global effort to end TB.

One of my favorite moments during the week was when Lucy was talking about the reality that many Kenyans live on less than a dollar a day. She asked the crowded living room, “What could you do with a dollar a day?”

The first response was, “Wow, I don’t know . . . not much?”

The next response from RESULTS activist Jesus Salinas was, “I’d give it to RESULTS.” That way he’d know it would have an impact on the world.

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