ALA: A TIme of Transition

As the ALA faces a new century, it does so with new independence following a recently announced split from the ATS. “I can see a lot of benefit to the ALA, other organizations, and patients,” says immediate past president Linda Ford, MD. The organization has some big goals and sees new opportunities for its programming, based in part on its split from the ATS as well as on its own revised goals.

A Century of Growth, A Decade of Change
Four years ago, the ALA made a strategic decision to focus the bulk of its programming, research, and advocacy efforts on two areas of lung disease, tobacco control and asthma, Ford says. “Recently, we also added environmental control,” she adds, but otherwise the ALA has not looked back since it made the decision to pursue a more narrow focus.

John Garrison, CEO of the national organization, explains that the narrowed focus was essential in order for the ALA to ensure for itself a continued high degree of efficacy and influence. “After we thought we had the best of tuberculosis and went generally into lung disease,” he says, “we simply found that we were too diluted, trying to do too many things.”

Local chapters remain free to target other lung diseases when they determine that such programming is appropriate, and Garrison notes that the ALA on the whole maintains its strong informational capacity in other areas of lung disease, such as cystic fibrosis, occupational lung disease, pneumonia, and influenza.

“From the standpoint of the ALA, we’ve put much more emphasis on asthma than we ever had before,” Garrison says of the organization’s current advocacy and program efforts. Much of the ALA’s newly unveiled education and awareness programming, as well as projects still in the development stage, focus specifically on asthma. “While we’re better known for our fights regarding tobacco and environmental control, asthma really has been a major area of emphasis for us. Some would say it’s not as compelling as some of the other missions, such as heart disease or cancer, but certainly asthma is compelling. Asthma doesn’t inspire fear, but it touches so many of us.”

Asthma Attack
Ford and Garrison believe that the ALA’s decision to take on asthma came at just the right moment. “We’re in this to accomplish a mission, to fight lung disease, and asthma is a big problem in this country right now,” Ford points out. The ALA estimates that in 1999, more than 17 million Americans have asthma, a figure Garrison cites as more current and probably more accurate than the Centers for Disease Control and Prevention’s estimates.

To combat the situation, the ALA has created several programs aimed at increasing asthma awareness. Open Airways for Schools is an educational program provided in schools by nonmedical personnel, offering training for 7- to 11-year-olds who have asthma. In June 1999, the program had reached more than 200,000 children in 17,000 elementary schools nationwide, Ford says. “We’ve done outcomes studies, so we know that kids who go through that program will have decreased absences from school as well as more control over their asthma. It keeps them out of the emergency department,” she explains, an important accomplishment because studies and ALA experience demonstrate that asthma complications are the single biggest reason children miss school.

The ALA considers Open Airways a huge success, but Garrison hopes for still more from the program. “We’re in about 28% of schools, but we need to get still more support. We would like to be approaching 100% by the ALA’s 100th birthday,” he says.

A 1998 education program developed in conjunction with the Children’s Television Workshop (CTW) also has seen much success. Sesame Street A Is for Asthma features a curriculum geared toward preschool-age children and most often is distributed through child day care centers, usually free of charge, according to Ford. “I’ve seen the little ones watch this, and they’re just amazed by it,” she says. The bilingual program was distributed nationwide and was specifically targeted toward areas where there is an increased prevalence of asthma, including low-income areas and those with ethnically diverse communities.

“The more education we can get out to people who have asthma and to parents, the better,” Garrison says, who finds that variety in outreach programs helps guarantee more success in reaching greater numbers of at-risk children. To that end, CTW produced several new songs for the A Is for Asthma video, including The Breathing Song, and also introduced a new muppet named Dani, who has asthma.

Other ALA asthma programs presently in development target diagnosis and early intervention. For example, the Asthma Screening in the Schools program, Ford says, “comes from an even more basic need to identify those children who have asthma. After all, to be able to educate, you have to know who has asthma. There are just so many people at this time who are still not diagnosed for their asthma.”

The screening program, developed in partnership with the American College of Asthma, Allergy & Immunology, hopefully will allow schools and parents to identify children who suffer from asthma early on so that intervention and prevention efforts can begin at a younger age. Ford personally believes that asthma screening is a long time coming. “We screen for a lot of other conditions in the schools, but the most chronic disease of childhood, we don’t screen for,” she says.

Currently, the ALA has six test sites operating at schools around the country that are designed to assess the efficacy of asthma screening. “We want to see how helpful [screening] will be: whether it will pick up anyone new at all, and whether it will pick up enough [new diagnoses] to make a program worthwhile,” Ford notes. She hopes to see a larger pilot program start in autumn of 1999.

Certification for Asthma Professionals
One important new education program targets not the asthma patient, but the health care professional who works with asthma patients. The Asthma Education Certification program came about in January 1999 after an ALA-sponsored consensus conference was attended by approximately 50 asthma-related organizations. Ford explains that “the group focused on the need for well-trained educators who knew not only about asthma, but also about how to get that information across to their patients—people who understand teaching principles as well as asthma as a disease.”

Asthma education certification remains in the early stages of development, but the program is moving forward quickly. Ford says the first examination might take place as early as the end of 2000. It will be available to health care professionals from across the spectrum, according to Ford, including RRTs, nurses and nurse practitioners, pharmacists, physician assistants, and physicians. The ALA will fund most of this new program through its local chapters, but “the board that will take responsibility for developing the certification program will reflect all of those same specialties,” Ford points out.

Like the ALA’s screening and early childhood patient education programs, educator certification derives from a basic need. “It’s important for those with asthma to be educated and trained in how to manage their own disease,” Ford says. “The medication we have to offer is good, but we also need to have appropriate programs to get the related information across to patients. People learn in many different ways, and health care providers have to be able to change their teaching techniques in order to reach everyone.”

Over the next several months, the board—which was slated for selection in August 1999—will devise the program’s framework and take steps to make it available to all asthma professionals. “For example, the board will determine how many hours of training individuals must go through before they can sit for the examination, what kind of training suffices, and what will be on the examination,” Ford explains. She expects the program to be modeled after the diabetes educator certification program, and other similar efforts, which require approximately 1,400 hours of training.

In addition, many local lung associations put together their own professional asthma days, according to Delia Naughton, director of asthma programs. “Those programs teach professionals within the immediate community,” Naughton explains. “They’re performed on a local basis according to the specific needs of the community.”

Taking on Tobacco
News of the tobacco industry settlement has received mixed reactions on all fronts, and at least on some aspects the same holds true in the ALA’s tobacco advocacy camp. Overall, though, the ALA views the settlement outcome as a huge success, according to Garrison. “I think we’ve won a victory, for a variety of reasons,” he notes. The ALA was opposed to the first settlement proposal, as were the heart and cancer associations. “We did not think the tobacco industry should get any kind of legal protection, and for a long time we stood alone on that issue.”

Holding out for a different settlement was key for two reasons, according to ALA leadership. For one, the tobacco industry remains liable—“just like any other corporation must be liable,” Ford says. In addition, the ALA found the public health aspects of the tobacco settlement to be key. “We agreed that the Food and Drug Administration should have control over nicotine,” she adds.

“As I look at things today, I think the tobacco industry is still on the defensive,” Garrison asserts. “There are over 500 lawsuits out there right now, and domestic liability is their biggest liability concern. That’s why RJR Nabisco split its tobacco and food divisions. Also, at this juncture, the industry is held in such low regard by the American public, and that poor image has only increased.” He points to the proliferation of tobacco control legislation in several states as further evidence of the settlement’s far-reaching effects.

Ford worries, however, about the settlement’s more direct consequences. “In my own personal opinion, the settlement was not nearly enough to compensate the states for all the money they have spent,” she says. “I hope the states understand that if they don’t put that money toward tobacco-

control issues, they’ll continue to have expenditures and ultimately they will not have gained anything.” This issue has remained key in almost all of the settlement states, she explains, because “a lot of the monies are not going to tobacco control. They’re going towards roads and bridges, that sort of thing.”

While the settlement took center stage in many respects, other tobacco-related efforts at the ALA have not fallen by the wayside. The organization continues its smoking cessation education programs through programs such as Teens Against Tobacco Use (TATU). TATU relies on volunteers to train teens, who then visit with elementary school children to talk about tobacco and use prevention. The teens who participate also make a personal commitment not to use tobacco. “We’re trying to reach out to a population that’s at risk, as well as reaching younger kids who will soon be coming into that age group,” Ford says of the program’s goals.

Another teen-focused program, Not On Tobacco, is an on-site smoking cessation program for teenagers that was developed at West Virginia University. Eight sites began operating in December 1998, and Ford says that so far the program has seen a 28% smoking cessation rate. The ALA also recently released “Smoke and Mirrors: A History of Denial,” a 75-minute movie about the tobacco industry and its marketing practices over the past 100 years.

Ultimately, the ALA believes that the tobacco settlement, combined with public settlement and programs such as its educational efforts, is having a significant impact. “We have more money in tobacco control than we ever had before. We have more people looking at tobacco control, more people thinking about smoking cessation,” Ford points out. “Smoking has become an issue. That’s a success.”

Clean Air Advocacy
Tobacco was not the ALA’s only big advocacy issue in recent months, however. The organization also continued its efforts to improve air quality standards under the Clean Air Act, an ongoing battle that first began with an ALA lawsuit against the Environmental Protection Agency (EPA) in 1990. “It is technologically possible to clean the air up. It just costs a little money,” Ford points out. “Unfortunately, people don’t physically see the effects of bad air quality in most places, so they don’t view it as an issue.”

The ALA has kept up its pressure to improve air quality throughout the 1990s, but as the decade comes to a close, Garrison reports that the situation has taken a turn for the worse. “We thought we had a good situation up until a few weeks ago, when a federal court threw out a set of improved standards that had gone into effect,” he says. The problem came down to the court’s interpretation of who can set up and approve standards, according to Garrison. In essence, Garrison says the court relied on an obsolete legal standard, one never before applied, to say that Congress and not the EPA was charged with setting such standards. “That just flies in the face of a lot of history and precedent.”

Both the EPA and the ALA plan to file appeals to reinstate the stricter air quality standards. “Our legal department tells us that the legal reasoning the court adopted was outlandish, so we feel confident that the Supreme Court will hear this case and will agree with us,” Garrison reports.

The legal setback has not impacted ALA education and awareness efforts on the clean air issue. Tools for Schools, a program developed in partnership with the EPA, brings the indoor clean air initiative front and center in classrooms nationwide, according to Ford. The program’s curriculum is designed primarily for administrators and maintenance crews. “It includes a video to help schools learn what they can do to control and even improve air quality,” she explains. “Many schools are old, with old boilers and other systems, or they were assigned many more children than the buildings were designed to handle.” And although the general public often assumes that poor air quality matters only to children with asthma or other chronic problems, Ford notes that the improved indoor air quality in schools that have implemented the program ends up benefitting every child’s health.

Expanded Emphasis on Research
Each year, the ALA gives more than $4 million in grants per year, “usually to young investigators, just starting their careers in health research,” Ford says. The grants, and ALA’s overall research support program, have taken a new turn in recent years to coincide with the organization’s emphasis on asthma. Called Asthmattack!, the new research emphasis is set to take a prominent position in the ALA’s programming and funding efforts. “Asthma research is going to be a signature program of the ALA in the next century,” Garrison asserts. “Research in general will be a major item for us in the future, and in some ways that’s a change for us because we’ve put a lot into public health and education in the past.”

Asthmattack! provides $2.5 million in funding over 5 years to research centers at the University of Utah, Salt Lake City; the National Jewish Medical and Research Center, Denver; and the University of New Mexico, Albuquerque. Ford says the program will focus on basic asthma research.

Another new research program also focuses on asthma. The Asthma Clinical Research Network consists of 19 research sites, all funded by local lung associations, with data coordinated through Johns Hopkins University, Baltimore. “This will be a far larger asthma research network than any organized to date,” Garrison says, and Ford adds that at 19 sites, the project has taken on far greater proportions than even the ALA thought it could achieve; the project’s original goal called for five sites nationwide.

“When this is up and running, it’s going to make a big difference in what we know about asthma from a clinical standpoint,” she says. “Pharmaceutical companies also do a lot of research, but they focus on drugs. Sometimes those coincide with other projects and needs, sometimes not.” With principal investigators already selected and organizational meetings under way, Garrison says, “we can anticipate that they will start operating in the year 2000, and will have a very vibrant network in 2001.”

The Next 100 Years
The ALA sees a bright future ahead as it approaches a new millennium and another century of lung health advocacy. “If you think about the last 100 years, lung cancer was rare at the turn of the century, and that changed because of tobacco. When we get rid of the tobacco problem, we will see the incidence of lung cancer, and lung diseases go down. During this next 100 years, I certainly can envision tobacco’s influence disappearing.”