Despite the money spent on fighting the disease, we’re still searching for the cure to win
by Alex Lubischer
Bad news first: Cancer is still here, despite the hundreds of billions of dollars the United States government and its citizens have spent fighting it. And it’s not going away any time soon.
The good news, since their peak in 1990 and 1991, cancer deaths have fallen 20 percent. This means that 1.2 million cancer-related deaths have been avoided. The reason for this? Money. And in order for those death rates to keep dropping, we need to keep spending money. To be more specific, we need to make the funding of cancer research a priority.
Funding impacts research, which impacts breakthroughs, which impacts greater potential for cancer to become a lesser threat. With enough money funding the right kind of research, cancer could, in theory, one day become hardly a threat to humans at all.
But getting there, even trying to get there, will cost us. Consider the numbers.
According to the National Institutes of Health (NIH), all U.S. healthcare expenditures related to cancer in 2009 cost the U.S. an estimated $86.6 billion. If you factor in $130 billion for indirect mortality costs (the toll of lost productivity due to premature deaths), that’s $216.6 billion in one year.
Furthermore, The National Cancer Institute (NCI, a branch of the NIH) has spent roughly $90 billion on research and treatment since 1971. Additionally, about 260 nonprofit organizations in the United States have dedicated themselves to cancer research, which amounts to combined annual budgets of $2.2 billion.
The American Cancer Society (ACS) is the largest health charity in the U.S. Its advocacy contributed to the passage of 1971’s National Cancer Act, which expanded the NCI and revolutionized the War on Cancer. It has helped scientists understand the link between cigarette smoking and lung cancer as well as funded research into the role of diet and physical activity, screenings, vaccines, hormone use and other environmental exposures in cancer development. It bills itself as the official sponsor of birthdays. In 2012 alone, ACS spent $713 million on patient support, prevention, research and detection.
So, with all that money being given to research and treatments, why don’t we have a cure for cancer yet? Because there can’t be one, all-encompassing cure since there’s not just one kind of cancer. The complexity of the enemy is what has made the War on Cancer such a long and costly one. In fact, it’s less a War on Cancer and more a War on Cancers—plural. We don’t need a cure. We need cures.
Start of the war
When President Nixon signed the National Cancer Act in 1971, it bolstered the funding available to researchers and was a huge step forward in unifying their efforts. It empowered the NCI director to establish national cancer research centers and control programs. Furthermore, it authorized the NCI director to coordinate all activities of the National Cancer Program (a name for the combined efforts of every American physician, hospital, research center and nonprofit engaged in the war on cancer).
In the 1970s, if the National Cancer Program were a sailboat, and the cures for cancer were on some distant shore, the NCI director would be the skipper at the helm.
The NCI’s 1974 Fact Book, for example, lists its resources ($431 million) as 57.4 percent of all national resources for cancer research. The other 42.6 percent of cancer research funding came from other federal agencies (12 percent), state and local governments (12.8 percent), voluntary agencies like the ACS (12.7 percent), private institutions (2.9 percent) and industries (2.2 percent).
Overall, the total amount of American dollars being spent on cancer research by everyone in 1973 was $751.9 million. That’s $4 billion in today’s dollars.
Over the next 40 years, a shift occurred as nonprofits, corporate donors and for-profit drug companies entered the market as major players collecting donations—often from the same pot as the feds. The NCI’s Annual Plan and Budget Proposal for Fiscal Year 2013 spoke of the Institute’s adjusted role as leader: The “efforts to control cancer and its effects—through science, medicine, and social programs—are now so vast, conducted by so many people and funded by so many organizations that leadership in any strict sense is not possible.”
Although one overseeing leader no longer exists, the NCI remains the single most influential entity in America’s War on Cancer. In 2012, NCI’s budget was just over $5 billion; ACS’s budget for that same year was $990 million.
It’s not what we say, but how we say it
The language we use to talk about cancer cures is flawed. The idea that a treatment or a vaccine will be developed to completely eradicate or prevent any type of cancer in the general population is an ambitious one. It’s not impossible, but it’s not exactly probable.
Although cancer deaths have declined over the past 25 years, people are still dying from cancer. If they don’t die, and the cancer is removed surgically or through radiation or chemotherapy, it’s still not exactly a cure. Months of illness, weight and hair loss resulting from treatments and the sacrifice of a body part or parts due to surgery can be painful, sometimes debilitating side effects of a so-called cure. A double mastectomy to rid a body of breast cancer isn’t a cancer cure as much as cancer management. And there’s always the chance of recurrence.
For all those boats navigating toward a cure, funding for research provides the wind in their sails. Most of this wind comes from NCI. Some of it comes from ACS. The breast cancer sailboat catches gusts from the nonprofit Susan G. Komen Foundation. Blood cancers have the Leukemia and Lymphoma Society (LLS). The pancreatic cancer sailboat gets an extra push from the Lustgarten Foundation for Pancreatic Cancer Research. But compared to the other nonprofits, its wind is more of a gentle breeze.
The amount of money being pumped into research for a specific kind of cancer determines how soon its boat will reach that distant shore.
Who gets the wind?
In 1971, NCI began publishing a yearly Fact Book. Although the overview of each year’s Fact Book varies slightly, they all provide an analysis of each fiscal-year budget and how it was distributed to various research programs and funding mechanisms. Many Fact Books also offer up-to-date cancer statistics for that year, created either with NCI data or data gleaned from ACS.
Chicago Health was curious as to whether the NCI’s funding of research for three different kinds of cancers (leukemia, female invasive breast cancer and pancreatic cancer) were linked to the estimated mortality rate for those cancers—and if so, to what extent? According to the NCI Fact Books from 1975, 1997 and 2010, the estimated mortality rate for leukemia, female invasive breast cancer and pancreatic cancer were only vaguely linked with the percentage of the total budget each cancer was receiving.
In 2010, for example, 17.7 percent of the total NCI Research Budget went to breast cancer research. Breast cancer that year accounted for 7.06 percent of all estimated cancer deaths, and the 2010 five-year survival rate for breast cancer patients was an exceptionally high 89.4 percent.
Leukemia was not as well funded, but still received a large slice of the pie. In 2010, leukemia accounted for 3.84 percent of all estimated cancer deaths, and it received 6.74 percent of the total NCI research budget. Its five-year survival rate was 57.7 percent.
That same year, however, pancreatic cancer research received only 2.73 percent of NCI’s total research budget, even though it accounted for 6.46 percent of all estimated cancer deaths. The 2010 five-year survival rate for pancreatic cancer patients was 7.2 percent.
It seems then, that where the money goes, so do the advancements in treatments, education and survival rates. This disproportion in funding carries over to the nonprofit world as well.
In 2003—the earliest annual report available to us—Komen spent $98,605,885 in program services including research and awards, public health education, health screening services and treatment services for breast cancer. In 2012, that number soared to $318,282,000.
LLS is the world’s largest voluntary health agency dedicated to blood cancers. Its mission encompasses curing lymphoma, Hodgkin’s disease and myeloma in addition to leukemia, so it casts a wider net in regard to the amount of funding and donations it receives. In 2013, it spent $254,208,000 in program services similar to Komen’s, but for blood cancers specifically.
Since its founding in 1998, the Lustgarten Foundation, by comparison, has committed approximately $77 million toward research to eradicate the disease. That total pales greatly in comparison to what Komen and LLS spend on one annual budgetary item. However, it is the largest private foundation dedicated solely to funding pancreatic cancer research.
Charities like the aforementioned can, and should, give as much money as possible to their specific causes. Yet, should there be a more equitable way of funding cancer research to get the greatest benefit for all?
A drop in the bucket
To know how effective research funding is, getting an aerial view of the facts and figures is essential. It is also paramount to see what it’s like to navigate one of those cancer sailboats.
Michael I. Nishimura, PhD, director of the Immunotherapeutics Program at Loyola’s Cardinal Bernardin Cancer Center, is principal investigator of a five-year, $16.3 million research grant from NCI. It’s allowing him to pioneer an experimental melanoma treatment that genetically engineers a patient’s immune system to fight the deadly cancer.
“We use melanoma as a model, but this treatment could apply to other cancers,” Nishimura says. “We’re studying the biology of the T-cells (types of white blood cells essential for human immunity) and trying to make them better.”
Nishimura is one of eight principal investigators on this research program project grant. The idea behind a program project grant, as Nishimura put it, is that 1 + 1 = 3; essentially, multiple projects funded by this NCI grant work together to become greater than the sum of their parts.
He feels fortunate to have received all of his research funding from NCI, especially as it becomes harder and harder to obtain.
A decade ago, 30 percent of qualified NIH grant proposals were funded. Today it’s down to 15 percent—the lowest rate in history. The odds of NIH funding a new cancer-research project are even lower at just 12 percent, according to Illinois Sen. Dick Durbin, lead sponsor of the American Cures Act.
Money is tight, and the initially approved funding amount is rarely received. Nishimura had requested $20 million, which a grant review panel approved. From there, the request was sent to the NCI. After further review, The NCI approved the request with a 19 percent funding cut, awarding Nishimura and his team only $16.3 million.
Even once a grant is secured, the amount of funding will most likely be reduced. This is done so that the NCI can fund other research, increasing the quantity of funded projects in action.
“They [the NCI] have actually cut it [my grant] every year since 2011 by 2 or 3 percent, so it will actually not be $16 million at the end of the day,” Nishimura says. “It will be in the upper $15 million [range].”
When his grant ends in 2016, Nishimura can apply for a renewal. However, the amount of funding one is allowed to receive in a grant renewal from the NCI has also decreased.
“In the old days, you could apply for 10 to 20 percent more than what you had gotten in the past,” Nishimura says. “This kept the cost of inflation in check. Currently, that’s no longer possible with the NCI.”
It may seem like $16.3 million is a lot to work with. But it’s important to keep in mind the enormous cost of conducting research and treating cancer in America today.
“The patient-care cost with everything, including making the product, the salary of physicians, the cost of materials, it’s probably [in the] $400,000 range [per patient],” Nishimura says. “That doesn’t include all the preclinical development. Patients can’t pay for that. Insurance companies won’t pay for it because it’s experimental.”
One perspective is that Nishimura’s work with genetically modified T-cells will hopefully have life-saving implications that could benefit thousands of cancer patients 10 years from now. Another way to see it is that a grant for $16.3 million will only directly treat 40 to 50 people.
The politics of cancer research
Throughout the past 50 years there have been peaks and valleys in federal funding for cancer research. In 1965, for instance, the U.S. spent more than 25 percent of our non-defense discretionary budget on cancer research and developments in treatment and diagnosis. Now, according to Durbin’s office, it’s down to 10 percent.
If passed this summer, Durbin’s American Cures Act would pump $150 billion into biomedical research at the federal and state levels over the next 10 years. This could signify a return to the economically robust years of the Clinton administration when, in 1998, the NIH began an initiative to double its budget over the course of five years. (NCI, which is the biggest organization at the NIH, benefited significantly.)
From 2003 to 2012, however, U.S. investment in NIH research failed to keep up with inflation. This resulted in a 22 percent decline in real purchasing power in a single decade.
But should it be the government’s— the taxpayers’—job to fund cancer research? Kathleen Goss, PhD, the director for strategic partnerships at the University of Chicago Medicine Comprehensive Cancer Center, thinks yes.
“There’s often the argument that if the government doesn’t fund cancer research, then the private sector will pick it up, and that’s a good thing for the economy,” Goss says. “The problem is that it’s different work that’s funded by pharmaceutical and biotech companies.” Goss explained that there are three kinds of research: basic, translational and clinical.
Basic research attempts to find out what’s going on at the cellular level; it looks at cells and how the body works. This can sometimes lead to a profitable treatment, but not always. Since only a small percentage of basic research will translate into profitable drugs (via translational and clinical research), pharmaceutical companies rarely, if ever, fund research at the basic level. But every new treatment will come about because of discoveries at the basic level.
This is why government support for basic research is so crucial, according to Goss, and why she believes it’s important that scientists increase their communications with legislators.
“The truth of the matter is, everyone has a different reason for thinking this is an important problem,” Goss says, “and so you have to appeal to all of those. When I meet with a Tea Party congressman who is [more concerned with economics], I’ll discuss economics. I’ll ask that the NIH funding [support] over 14,000 jobs in Illinois. Another thing I’ll [ask] when I talk to legislators is, ‘What is more important than saving people’s lives?’”
Nishimura is skeptical that the American Cures Act will get through the House. He points out that there was more funding for the NCI when Bob Dole had prostate cancer and Betty Ford had breast cancer.
“I would never hope that this would happen,” he says, “but if someone in the House had something like that, you might see a change in the attitude [about funding cancer research]. It actually has to hit home and have a personal impact on the politicians before they’ll do something that’s good for the country. That’s not the way it should be, but that’s what happens.”
Charting the rest of the course
Despite all of the money and all of the efforts, and yes, all of the breakthroughs we’ve seen in the War on Cancer, the ability to actually cure anything remains elusive. But early detection, causational understanding and management of cancer continue to improve. And with committed funding from the government, non-profits and for-profits of all sorts, scientists and doctors like Nishimura may be able to create the thing, or things, that will save us all from the clutches of cancers.
Until then, we’ll keep fighting the good fight by navigating the unknown waters ahead, pushing to make the funding of cancer research a priority.