People with tuberculosis live in the shadows and can’t organize as well as educated women and gay men, says Schluger.
Question: Why is TB research not as sexy as HIV/AIDS research?
Neil Schluger: Yeah. I think there are interesting reasons why so much money is being spent on AIDS and first of all I think it’s appropriate. It’s an enormous global problem that causes a tremendous amount of disease and death and we should respond to that so I think just on the face of it it’s- it deserves the funding it gets, but there is an important lesson I think to be learned from AIDS funding. AIDS was not getting so much attention until advocacy started, and some very passionate, smart, committed people started to do advocacy on behalf of patients with HIV, took all sorts of tactics, some extreme, maybe people would say disrupted meetings, barged in to offices of legislators, but ultimately they were heard, and I’ve gotten to know many of these people. They’re very smart, they’re very well informed, they understand the science, but they represent people who are suffering and those people understood how to use their economic power, their political power, their access to the media to get their message across. Other groups have learned that. Women with breast cancer have learned that so women with breast cancer have organized not just to have walks in Central Park but how to lobby their congressmen and vote to get things supported that they need support for. The TB community is way behind in all of those advocacy efforts. Now part of it is because unlike the HIV community where you had successful, educated men with HIV infection who were prominent in all sorts of areas in society, unlike breast cancer where you have successful, sophisticated women who know how to get access to the media and to politicians. TB has not really had that. TB really in the United States now is largely a disease of immigrants, many of whom don’t speak English, many of whom are probably not here legally. It’s a disease of poor people, of uneducated people, who don’t have that kind of sophistication and access so we’ve lagged far behind. I think we’re starting to catch up but I think that’s one of the reasons we’ve fallen way behind other important diseases.
Question: Should the government do more?
Neil Schluger: Yeah. The government needs to do more. The U.S. government earmarks relatively little money for tuberculosis. Every once in a while something happens in the media and politicians in Washington pay attention and we hope that they pay attention long enough to get some bill rammed through. Last summer everybody was aware of this guy flying around the world who had some kind of drug-resistant TB and Congress paid a lot of attention and they were hearing held- hearings held, and some bills to increase money for TB treatment and TB research moved a little further along in the Congress. They had been sitting there for years. So that got a lot of attention and pushed the ball a little further down the street but not quite in to the goalie’s net I guess you would say.
Recorded on: 04/25/2008