Looking beyond smoking, lung-cancer activists want early detection and treatment

by Laura Ungar
This article originally published as a special to The Washington Post on Monday, January 24, 2011.

After battling lung cancer and losing her sister to the disease, Marilyn Martens likes to hear the public-health community rail against smoking.

But she says anti-tobacco messages can't be the sole weapon against America's deadliest cancer; the focus needs to be widened to better emphasize early detection and treatment, too.

"It's really going to have to be all of these things," said Martens, 52, of Rockville, who underwent surgery for lung cancer in 2008. "I think there's a long way to go."

Martens is one of a growing number of lung cancer survivors, victims' relatives and advocacy groups calling for a greater, more comprehensive focus on the disease - similar to the multi-pronged approach to breast cancer.

Lung cancer killed 158,683 people in 2007, according to the Centers for Disease Control and Prevention. Five-year survival for lung cancer is 15.8 percent, up only slightly from 13 percent 35 years ago.

Doctors said there have been promising developments in treatment and early-detection research in recent years. But awareness of this progress is clouded by the overwhelming role that smoking plays in the disease, many say, an issue reemphasized in a Surgeon General's report last month. The report said that tobacco smoke contains at least 70 chemicals and compounds that cause cancer and that there is no "risk-free level of exposure" to tobacco smoke.

"We have a public-health epidemic that cannot be addressed with stop-smoking alone," said Laurie Fenton-Ambrose, president and chief executive of the Lung Cancer Alliance, a nonprofit advocacy group based in Washington. She said early detection and treatment are also crucial to reducing deaths.

But as they push for more attention to lung cancer, activists face a persistent stigma. "It's hard to digest that lung cancer is seen as the cancer you give yourself," said Martens, who was once a light smoker.

"No one deserves this disease," added Fenton-Ambrose.

Among other obstacles are a dearth of survivors to be voices for the cause and a lack of money. According to the alliance, federal research money for lung cancer from the National Institutes of Health, the Centers for Disease Control and Prevention and the Department of Defense totaled $218 million in 2010, compared with $1.15 billion for breast cancer.

But survivors said they are learning lessons from breast cancer activists and others who have successfully lobbied for money and attention to their causes. And doctors pointed out that there is plenty of overlap: Research on one cancer often leads to developments in others.

Fenton-Ambrose said she's determined that lung cancer comes out of the shadows. "Our movement for lung cancer has just begun," she said.

State governments are spending $517.9 million in fiscal 2011 to discourage the use of tobacco, according to the Campaign for Tobacco-Free Kids. And the CDC recommends that states should spend far more: $3.7 billion. Federal and state governments have also been raising cigarette taxes; the federal tax is now just over a dollar a pack.

Blame and stigma

Despite recent prevention efforts, adult smoking has plateaued in the past several years after dropping from 42 percent in the mid-1960s. The most recent federal numbers show that 20.6 percent of U.S. adults were cigarette smokers in 2009.

Current lung cancer rates reflect past smoking levels, since lung cancer can take many years, even decades, to develop. Up to 85 percent of cases are linked to smoking, medical experts say, although sometimes the cause is unknown and secondhand smoke, radon and asbestos are also culprits.

"One can actually say we have a better knowledge of how to prevent lung cancer than any other cancer," said Otis Brawley, the chief medical officer for the American Cancer Society.

But he said the blame and stigma surrounding the disease is unfair. He said that most people get hooked on cigarettes as impressionable teenagers and that quitting is extremely difficult because nicotine is more addictive than cocaine.

And, he said, those already sickened deserve research that gives them better odds of survival.

"Our approach to lung cancer should not just be anti-smoking research," Brawley said.

Brawley said recent years have brought promising progress on treating the disease. He pointed to Paul Bunn at the University of Colorado Cancer Center outside Denver and his work on lung cancer prognosis and selection of treatment.

Bunn is the principal investigator of his university's specialized program on lung cancer research, which is funded by the National Cancer Institute.

That specialized program is one of a growing number focusing on the disease. In Kentucky, which has the nation's highest rates of lung cancer and ties with West Virginia for the highest smoking rate, a 20-year initiative created by the state legislature funnels a small fraction of the state's tobacco-settlement funds into research. The 1998 multi-state tobacco settlement with tobacco companies has been estimated at $246 billion over the first 25 years. Scientists at the universities of Louisville and Kentucky are working on vaccines for the prevention and treatment of lung cancer, drugs based on novel ways of attacking the disease and new ways of finding it early.

A cure remains distant, scientists said, but early-detection research promises more-immediate benefits. A large study released in November showed that a type of advanced CT imaging can help reduce lung cancer deaths by 20 percent among heavy smokers. The imaging is much more sensitive than the commonly used chest X-ray.

Building momentum

One reason lung cancer remains so deadly is that it's often caught late.

Martens said she was extremely lucky to find her cancer early. Spurred by her sister's diagnosis, with no symptoms except for a tugging in her sternum, Martens had a regular CT scan that found a mass on her left lung. She needed surgery but not chemotherapy or radiation.

"I am the poster child for early detection," Martens said.

Nancy Alvey, a 58-year-old former smoker from Louisville, received a diagnosis of lung cancer about five years ago, after coughing up blood for two days. An X-ray found two spots in and around her right lung. She underwent surgery to remove the upper-right lobe of the lung and several lymph nodes. She suffered infections and needed four rounds of chemotherapy.

Alvey, who is now in remission, agreed with Martens that lung cancer is too often mentioned only in the context of smoking, with early detection and treatment left out of the discussion.

"While smoking is there, it's not the only thing," said Alvey, who works with the Lung Cancer Alliance and has also volunteered to speak with young people about avoiding tobacco. "It's a cancer just like breast cancer, and it deserves the same type of awareness."

Activism for breast cancer offers lessons for those seeking to elevate the cause of lung cancer.

"Our No. 1 strength is our grass-roots network," said Diana Rowden, survivorship and outcomes vice president at Dallas-based Susan G. Komen for the Cure, one of the best-known breast cancer organizations. "That didn't happen overnight. It started at the community level and spread that way."

She said the organization's Race for the Cure has also propelled it forward. The first one was held in 1983 in Dallas and attracted 800 people. In 2010, more than 140 races attracted more than 1.6 million participants worldwide.

"The race is very visible," Rowden said. "People are seeing women are surviving breast cancer and are healthy and active."

Another key is the organization's relationship with corporate partners.

Rowden predicted it wouldn't take decades for the lung cancer movement to reach the level of success of the breast cancer movement because others have helped light a path. She said breast cancer activists learned from AIDS activists who came before them.

Lung cancer activists say their work is starting to pay off.

Fenton-Ambrose said her group now has five state chapters. Among other activities, it has raised more than half a million dollars for research, education, advocacy and treatment through its annual run/walk.

Along with other advocates, the organization pushed for the Defense Department's Lung Cancer Research Program. The initiative was established to promote research on finding, treating and managing early lung cancer after officials concerned about tobacco use among military personnel and about troops' exposure to carcinogens in the field. Congress appropriated $35 million to the program over its first two years, and Fenton-Ambrose hopes an additional $16 million will be appropriated for 2011.

"I think there's a long way to go," said Martens, who has participated in recent lung cancer walks and watched them grow year by year. "But I think there's some momentum."

Ungar is a medical writer at the Courier-Journal in Louisville.