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At a meeting of TB folks not so long ago, somebody mentioned the subject of the American Lung Association (ALA). "My chapter never does anything for us," was one comment. "Oh? Ours is really helpful," someone else replied. What accounts for the difference? According to Diane Maple, media representative for the ALA in Washington, DC, local epidemiology and resources both play a big part.
TB-related activism or lack thereof "is definitely a function of local TB rates and of whether we have the staff to do it," she says. "Where there’s a big TB problem, most lung associations have at least one staff person part-time [working on TB]." But each lung association must raise its own money, she adds. "With two or three staff members in an office trying to do everything, devoting a whole position to just TB would be a real luxury."
Lee Reichman, MD, former president of the ALA and executive directive of the Model TB Center at the New Jersey Medical School in Newark, agrees — but won’t let the ALA off the hook altogether. "This is something that’s always bothered me," he says. "I’ve been very disappointed that in some places, the ALA hasn’t always fulfilled its mandate to be a leader in TB control."
That doesn’t mean TB experts should sit around grousing, Reichman adds. "The ALA is volunteer-driven," he points out. "Get on the board. Get some influence. A lot of doctors don’t have the patience to do this, but you’ve got to get out there and build that grass-roots support."
Maple agrees: "If there’s someone working on TB, get to know them."
Two lung associations in two cities, both working hard to fight TB, show two different ways TB activism works.
Chicago’s ALA chapter founded the highly effective Metro Chicago TB Coalition. Since its inception two years ago, the coalition has picked up 40 to 50 partner organizations, held workshops for homeless shelters, planned strategies with HIV clinics, and staged fundraisers. At the TB coalition’s last quarterly meeting, so many people showed up that some had to be turned away.
Local TB controllers say much of the credit belongs to a tireless woman named Judith Beison, a community outreach coordinator. Hired a year ago to work half-time on TB (she devotes the rest of her time to asthma), Beison brings an energetic, straightforward approach to the process of coalition-building. "I get out and talk to people," she says. "I think it’s important to help communities connect. If there’s a better way to do it, someone’s going to have to tell me what it is." Although Beison came to her new job knowing next to nothing about TB, she says her co-workers have been a big help, supplying her with videos and workbooks. "It’s been a steep learning curve for me," she concedes.
Last October, she launched the first of an ambitious series of planning initiatives, staging the Southside Symposium, which brought together TB providers from that part of the city. The principal aim of the symposium was to get people connected, she adds. "If someone has TB, we wanted to make sure that all their caregivers were talking, and to expedite referrals, and to make sure the public and private sectors are collaborating," she says. What sounds like a simple goal proceeded to play out in a carefully planned step-wise process.
Between 75 and 80 people showed up, including nurses, physicians, community leaders, public health types, and social workers, she says. After some education in TB basics, the crowd split up into five groups; then the groups talked about how better to engage communities in their area, Beison says. The next step was the formation of a Southside planning group. The planning group gave birth to collaborative agreements on how best to manage TB patients.
Last spring, the lung association staged a second planning symposium, this time on the city’s west side. Last month, Beison was busily preparing for this month’s Northside Symposium, when she wasn’t talking with shelter operators, HIV clinics, politicians, and people on the subway. "I talk to everyone I can," she says cheerfully. "They’re like, Do you mean to say I can still get that disease? Just standing next to someone?’"
In San Diego, it’s a different story. There, the ALA affiliate is a strong player in TB with a long history of involvement. "Here, the environment is right," says Ross Porter, communications director of San Diego’s ALA chapter. "With our rates, it’s imperative that we focus on TB. But along with that, we have historic roots."
In 1907, the local lung association worked hard to raise money to build a TB sanatorium, Porter says. But the municipality mounted a not-in-my-backyard opposition, forcing the issue all the way to the state supreme court; ultimately, pro-sanatorium forces won the day.
In the 1960s, a physician named Kenneth Moser, MD, became active in the lung association. His daughter, Katherine (now the TB controller for San Diego county), stepped into her father’s shoes and now sits on the ALA board. "Kathy is a volunteer leader and a real policy driver here at the ALA," says Porter. "We include her in anything that has to do with TB."
For the past 10 years, the San Diego ALA has held a binational TB conference on World TB Day, occasionally generating much publicity and featuring big-gun speakers. Last year, the association broke with precedent, focusing instead on new TB guidelines.
This year, the group’s big project will be to revamp and strengthen its web site, Porter says. "We want to be a resource for physicians," he explains. "Kathy [Moser] wants to update our web site and keep it up to date. We’re building a database of pulmonary doctors; soon, we plan to be a real source of news and updates."
With direction from a pediatric task force, the lung association also conducted school-based testing for a while. "We’re no longer doing that, but we did raise school nurses’ awareness," Porter says. "Plus, now the nurses know exactly who to call."
Porter has also begun to collaborate with a local member of Results International —- the grass-roots advocacy group that’s adopted TB as a special cause —- in writing letters to the editor and otherwise trying his hand at political advocacy, he says.
These days, along with work on the TB web site, the chapter is exploring new ways to reach targeted communities. One of the most popular outreach tools is a colorfully decorated, forty-foot bus (powered by non-polluting compressed natural gas, of course). The Lung Express, as it’s called, visits elementary schools and provides kid-friendly interactive learning, with exhibits on air pollution, asthma, and TB. "There’s even a model of a lung you can walk through," says Porter. The exhibits were fashioned with the help of a science and technology museum in Portland, OR, he adds.