Stigma of ‘smokers’ disease’ stifles fight against no. 1 killer, lung cancer
About 15 percent of lung cancer cases are in people who never smoked
Posted with permission from FairWarning.org:
Lung cancer takes more lives than any other cancer. This year it will kill an estimated 160,340 Americans – more than breast, colon and prostate cancers combined.
Yet while lung cancer remains largely a death sentence — just 15.9 percent of those diagnosed are alive five years later — the federal government funds far less research on the disease than on other common cancers. The discrepancy is starkest when death rates are taken into account. In 2011, the two federal agencies providing most of the research money funded breast cancer research at a rate of $21,641 per death while spending $1,489 per lung cancer death.
It has been 41 years since President Richard Nixon signed the National Cancer Act, effectively declaring war on cancer. But there will be no victory without winning the battle against lung cancer, which causes more than one in four U.S. cancer deaths. Advocates say efforts to improve lung cancer patients’ chances have been stalled by unexamined biases among health officials and the public as well as by scant research funds. They also cite the paradoxical invisibility of a disease that claims so many lives but has few champions of the sort who have made breast cancer a cherished cause.
The stigma of smoking is largely to blame. Anti-tobacco campaigns have, in a way, done their job too well, leading many to see lung cancer as self-inflicted. That stigma keeps some families and patients from speaking out, while corporate donors stay away from the disease, and some scientists and policymakers question whether scarce research dollars should be devoted to a smokers’ illness.
The “reservations about this investment are a mirror of our society,” said Dr. Denise Aberle, a professor of radiology at the University of California, Los Angeles. She said the attitude is “You brought it on yourself.”
In fact, an estimated 15 percent of lung cancers are diagnosed in people who never smoked. If lung cancer in never-smokers were considered a separate disease, it would still be the sixth-leading cancer killer in the U.S., ahead of liver, ovarian and esophageal cancers. Researchers estimate that another roughly 50 percent of lung cancer cases involve former smokers who quit the habit years ago.
“Health care providers, scientists, politicians, patients’ family members and the patients themselves all bear some burden of the responsibility for the fact that lung cancer research is grossly underfunded,” Aberle said. “It’s time to get past this.”
Dr. David Carbone, a leading lung cancer researcher at Ohio State University, added, “This is a public health problem that needs to be addressed, regardless of how it came about. We need to take care of those who are sick and need to do everything we can from a public policy perspective to reduce the number of people at risk in the future.”
Recent breakthroughs in cancer genetics and lung cancer screening have added urgency to advocates’ calls for more money for lung cancer research, which will get $231.2 million this year from the two main federal agencies funding such work.
“We are at a precipice where we could really break through,” said Kim Norris, president of the Lung Cancer Foundation of America.
But these advances have come at a time when funding for research is scarce. And many influential scientists, such as the head of the National Cancer Institute, balk at letting pressure from advocates influence research priorities. In their view, it could set the entire cancer research field back by leading to a quota system for research on specific cancers instead of funding the most cutting-edge science that will advance the field overall.
Carbone, however, says unless a portion of federal funds are specifically directed to lung cancer, advances in the field will remain baby steps. “We didn’t send people to the moon because we happened to have a rocket ship sitting around. We sent people to the moon by saying, “‘That’s what we want to do.’ And then we figured out how to do it.”
Making that moon-shot will mean convincing the public and policymakers that lung cancer victims are worthy of support.
Part of the challenge is that the disease is so deadly that there is no critical mass of survivors to raise its public profile. Most people are diagnosed at an advanced stage and die within six months, said Jeffrey Borgia, a cancer researcher at Rush University Medical Center in Chicago. “There’s not much time to fit a walkathon in,” he said.
In contrast, breast cancer advocates have raised millions through everything from road races to galas. The White House is lit pink each October for Breast Cancer Awareness Month. Pink ribbons have graced items including pistols and fried chicken buckets, becoming so ubiquitous that some now question whether the cause has become too commercialized. Lung cancer groups, however, have struggled to attract attention. In fact, the original color for lung cancer ribbons was clear – as in, invisible.
Major League Baseball players use pink bats and gloves in support of breast cancer awareness around Mother’s Day Each year. The National Football League has raised $3 million for breast cancer screening and awareness over the last three years. During the campaign players wear pink cleats and pink-ribboned helmets.
The effort started among players and some teams before growing to its current scale, said Anna Isaacson, a league spokesperson. The league regularly surveys its fans and breast cancer awareness resonates with them. Isaacson said the league is approached often by advocates for many different diseases, though she couldn’t recall being contacted by a lung cancer group. “It’s not ringing a bell,” she said.
“Every single corporation wants to have a pink ribbon on their product, but there’s nobody who has raised their hand for lung cancer,” said Linda Wenger, executive director of the Uniting Against Lung Cancer research foundation.
If lung cancer can get a powerful person or prestigious institution to take on its cause, it could boost both research coffers and the disease’s public profile, said Stacy Palmer, editor of the Chronicle of Philanthropy. AIDS, for example, lost its stigma in large part because Hollywood tastemakers took up the cause, she said. Similarly, when Betty Ford came forward about her breast cancer in 1974, it moved the disease out of the shadows.
Perhaps the best example of how strong advocates can spur scientific research is the Defense Department’s medical research program. In 1992, the National Breast Cancer Coalition, led by a breast cancer survivor and lawyer, Fran Visco, persuaded the Defense Department to create a breast cancer research program funded by Congress. The resulting Congressionally Directed Medical Research Program has been allocated $2.8 billion for breast cancer research in the last two decades.
But even though the armed forces skew heavily male and military members smoke at high rates (cigarettes once were included in soldiers’ rations and have been sold at cut-rate prices on military bases), it took 17 years before the program began funding lung cancer research in 2009. Even then it got only a fraction of the funding breast cancer received.
Congress decides how much should go to each disease covered by the Defense Department’s research program. A retired rear admiral who was dying of lung cancer convinced then-U.S. Rep. John Murtha, D-Pa., a member of the House Appropriations Committee, to push for lung cancer’s inclusion. But Murtha died in 2010, and funding for lung cancer research has been shrinking since – dropping from $20 million at its inception to $10.2 million over just three years. (The Defense Department’s money for medical research is declining overall, but lung cancer funding has fallen particularly swiftly.)
“It’s really challenging now. There just isn’t a champion,” said Regina Vidaver, executive director of the National Lung Cancer Partnership.
Before it can find its champion, lung cancer will have to shed its stigma. This summer, advocates released an ad campaign aimed at shocking the public into examining its biases against people with lung cancer.
Posters featuring a young man with geeky glasses and a plaid scarf began popping up across the country. “Hipsters deserve to die,” they read. “Cat lovers deserve to die,” read another.
The point was provocation, said Kay Cofrancesco, a spokeswoman for the Lung Cancer Alliance, which sponsored the ads. When a person hears that an acquaintance has lung cancer, she said, a question immediately springs to mind: Did he or she smoke?
The answer often is “no.” Lung cancer among non-smokers is rising, with women accounting for two thirds of these diagnoses. One famous example is Dana Reeve, the singer-actress and widow of Christopher Reeve, who was best known for his role as Superman. A non-smoker, Reeve was just beginning to emerge from the grief of losing her husband when she was diagnosed with Stage IV lung cancer at age 44.
“People think, ‘Oh, gosh, how unusual,” said Dr. Deborah Morosini, Reeve’s sister, a pathologist. “Really it’s not, because cancer in that demographic has increased and we don’t understand why.”
Many lung cancer victims who are former smokers blame themselves. Karen “K” Latzka, a vice president of a consulting company who lives in Hawaii, started smoking when she was 16. Between classes, she’d head to her school’s smoking area and light up a Virginia Slim, whose ads featured the type of elegant businesswoman Latzka wanted to become.
She smoked for 20 years before finally quitting. But in February 2010, a dozen years after she quit, Latzka developed a nagging cough and got the dreaded diagnosis: lung cancer.
“The automatic response, even from myself, was that I deserved it. You feel almost as if you are taking resources away from people who maybe deserve it more,” said Latzka, who eventually overcame those feelings of guilt.
Lung cancer victims who smoked are blamed for their illness in a way that people with diseases like heart disease and cervical cancer are not, even though these illnesses are linked to poor diets and unprotected sex, respectively – behaviors that are avoidable and known to be harmful.
Yet blaming smokers who fell prey to cigarette marketing seems inconsistent – after all, society condemns tobacco companies for deceiving customers and even maximizing the addictiveness of cigarettes. “[We should] vilify the tobacco industry instead of vilifying patients,” said Dr. Carolyn Dresler, medical director of the Arkansas Department of Public Health’s Tobacco Prevention and Cessation Program.
Lung cancer can be caused by factors such as exposure to radon, asbestos and other toxins. About 10 percent of lung cancer deaths are caused by heredity, said Ann Schwartz, a researcher at Wayne State University in Detroit. Yet lung cancer’s image as only a smoker’s disease can undercut support for research that looks at causes other than tobacco use. Understanding other factors behind lung cancer could make all the difference for nonsmokers like Barbara Densen, a children’s librarian from Summit, N.J., who has battled lung cancer for three years. Her husband, Rob Densen, shared a comment she has often made: “Smoking didn’t cause my lung cancer, but it’s probably going to kill me.”
In an effort to decouple the image of smoking and lung cancer, some advocacy groups don’t even ask the patients they support if they smoked unless it is medically relevant.
But Dr. Otis Brawley, chief medical officer of the American Cancer Society, said he is concerned by the reticence of some lung cancer advocates to talk about tobacco. “If I was czar of the world, I could save so many lives from lung cancer over the next 50 years if I just got rid of cigarettes today,” he said.
Many lung cancer advocates and experts have called for a reassessment of the way research money is distributed at the country’s largest funder of cancer research, the National Cancer Institute.
Research grants from the NCI are the most important financing a cancer researcher can get. But the NCI’s funding, allocated by Congress, has remained nearly flat since 2003, aside from a one-time infusion of $1.26 billion as part of the stimulus package of 2009. Still, today the NCI funds only about 14 percent of applications for its most common research grant, called an RO1 grant. That’s less than half the percentage it funded a decade ago.
Congress does not dictate how much NCI can spend on each type of cancer. Instead, NCI funds the cutting-edge science most likely to advance the field overall.
Lung cancer receives less funding than other cancers under this approach, too. In fiscal year 2012, the NCI will devote $221 million in research grants to lung cancer and $712 million to breast cancer, according to National Institutes of Health estimates.
NCI officials caution against reading too much into these numbers. Most of the research the institute funds is basic research that applies to multiple types of cancer. The institute also funds tobacco control and financed the National Lung Screening Trial, a large, multi-year trial that recently established that low-dose CT screening of smokers reduces lung cancer mortality. It was one of the institute’s most expensive projects to date, a spokesperson said.
But some researchers, like Carbone, say the problem with the NCI’s prerogative of funding the most advanced cancer research, regardless of what organ it involves, is that research on some types of cancer is further along than others. Breast cancer, for example, has been better funded for longer and had earlier breakthroughs that attracted more top researchers and more money, from the federal government and other sources. “The infrastructure in the one disease is better than the other. It’s a self-perpetuating problem,” Carbone said.
Cancer research is increasingly focused at the molecular level instead of focusing on individual cancers of the breast, colon or other organs. Researchers now know that cancers at different sites in the body can be caused by some of the same genetic mutations. But a single mutation can behave differently in different organs, so it is still necessary to look at particular cancers such as lung cancer, Carbone said.
The other side of the argument is represented by Dr. Harold Varmus, the head of the NCI. He declined to be interviewed by FairWarning, but in a speech at the National Press Club in September, he said he would “object dramatically” to efforts such as legislation that would force the NCI to set aside specific pots of money for specific cancers. This approach, advocated by some groups over the years, would “take the decision-making about grant making out of the hands of the NCI and [put] it in the hands of advocacy groups,” he said.
Given the sheer number of lung cancer diagnoses, drugmakers have a vested interest in developing new treatments and screening tools. Indeed, there are currently more lung cancer drugs in development than drugs for breast, prostate and colorectal cancers, according to the Pharmaceutical Research and Manufacturers of America, an industry group.
But pharmaceutical investment can’t supplant federal funding; in fact, drug makers build on the sorts of basic research the NCI funds to develop new treatments. Public money supports more than four-fifths of all basic research used to discover new drugs and vaccines, according to one estimate.
Borgia, the Rush Medical Center lung cancer researcher, has watched nervously as the shortage of research funding has driven his peers from the lung cancer field. He was hired with four other researchers who have all lost their jobs for lack of funding. Borgia hasn’t gotten an NCI grant yet, but he’s been kept afloat by a grant from a lung cancer foundation. Still, he’ll be gone, too, if he doesn’t get a big federal grant or a contract with a drug company, “My neck is in the noose next,” he said.
Borgia is working on blood tests that could be used to make lung cancer screening more safe, effective and cheap. He said that, while a cure is far off, today’s researchers have made advances in diagnosis, early detection and treatments that could save tens of thousands of lives. “That’s here right now, you just have to invest in it.”
FairWarning (www.fairwarning.org) is a nonprofit, online news organization focused on issues of safety, health and government and business accountability.