Is There a Popularity Contest in Cancer Funding?

July 30, 2009— -- Of all things you don't want to turn into a popularity contest, cancer funding is one of them.

Rick Bangs, 51, likes to point out that the cancer he survived is the fifth most common cancer in the United States and the fourth most common cancer among men. But back in 2006 when he saw blood in his urine, neither he, nor his primary care doctor, considered bladder cancer for several months.

"I didn't push it," said Bangs. "At the time, I was back to what the general practitioner said and the urologist said, 'yeah, it could have been from your prostate.

"It never crossed my mind that it might be cancer. That's kind of naive, but that's the way it is," he said. Five weeks after his diagnosis, Bangs had his bladder removed and a neobladder made from intestinal tissue. He has to empty it every four hours -- day or night -- for the rest of his life.

But what irks Bangs isn't the hassle with a neobladder. After researching his cancer, Bangs discovered that bladder cancer fell into some of the silent cancers in America -- ones that are common and deadly, but don't receive the same amount of attention and money as some highly publicized cancers.

Take, for example, lung cancer. It is the most common cancer in the United States and a very deadly one, but it gets an average amount of funding -- $1,128 per new person diagnosed last year -- from the National Cancer Institute (NCI).

Breast cancer, on the other hand, is ranked No. 3 in new cases last year and received $2,976 per new case. Leukemia ranks ninth in new cases and got $4,831 per new case in 2008. However, bladder cancer, which ranks fifth, got around $340 per new case. That means the fifth most common cancer ranks 19th in funding.

Add in private money and special funding from the U.S. Department of Defense and the disparities between number of cancer victims and number of dollars grows.

"Bladder cancer doesn't have a strong patient advocacy group unlike the Komen foundation for breast cancer or Lance Armstrong's foundation for testicular cancer," said Dr. Edouard J. Trabulsi, associate professor of urology in the Kimmel Cancer Center at Thomas Jefferson University in Philadelphia.

Chicken or the Egg: Who Gets Cancer Research Funding?

"There's nothing all that new or exciting on the treatment front. Is that the chicken or the egg, where if there was more money there would be more research, I don't know," Trabulsi added. "But bladder cancer is sort of an orphan stepchild at least in urology-oncology."

Bangs, and other bladder cancer advocates say the difference is unfair. But those at cancer funding centers say doling out dollars cancer by cancer is not the best model. Rather, paying by scientific promising ideas saves the most lives in all cancers.

"Obviously, as a survivor, I think at least it should be equitable. There has been no forward progress in the treatment of bladder cancer in quite some time," said Bangs, who is a volunteer for the Bladder Cancer Advocacy Network.

But Dr. Otis Brawley, chief medical officer of the American Cancer Society, points out that when it comes to funding cancer, funding the most promising ideas can help any cancer.

"You actually pursue the easiest scientific opportunities because you don't want to be criticized of wasting the money," said Brawley. "You need to realize how you label something for one disease or another disease is not exactly not written in stone."

For example, Brawley said an attempt in the 1960s to treat breast cancer by attaching an estrogen molecule to a leukemia drug never ended up helping breast cancer. But for the next 40 years the drug, estramustine, turned out to be the only effective drug for treating non-hormone responsive metastatic prostate cancer.

Brawley said the examples continue from prostate cancer research helping excessive menstrual bleeding or a leukemia drug helping breast cancer. But that's not to say marketing is the only part of it.

In Brawley's former career as an assistant director at the NCI, he noticed how certain efforts in cancer research promotion have paid off -- from a politician who gets the disease funding to the well-organized advocacy groups that get people into clinical trials.

On the government side, Brawley said politicians can use what's called the Gramm-Rudman-Hollings bill to get money for disease research through the Department of Defense. Unlike the NCI, politicians choose to allocate money for a pet cause.

How Some Cancers Get More Research Funding

"Senator Tom Harkin of Iowa wanted to increase breast cancer funding by $200 million in 1990 and Ted Stevens from had prostate cancer, and so he decided to get some money for it," said Brawley.

In addition to having a member of Congress concerned about a disease, Brawley said the activism within certain cancer organizations can attract more federal money by default.

"The National Breast Cancer Coalition under Fran Visco started doing this early. They organized themselves, and their advocates actually go take classes where they learn the science," said Brawley.

Brawley said the initiatives got women into more clinical trials, helped the coalition lobby for funds and ultimately led to a thriving research field that attracted ambitious doctors.

"As a whole, the prostate cancer groups had not been as committed and loyal to understanding the science as the breast cancer groups have," said Brawley. "I heard 'to hell with the science' so many times in prostate cancer groups."

Brawley said prostate cancer clinical trials failed while numerous clinical trials in breast cancer treatment were revolutionizing the standard of care from an extreme mastectomy, into less extreme mastectomies, into lumpectomies, where women keep most of their breast tissues. But the difference was a problem with finding male volunteers.

"Three times we had to shut trials down because men won't go into the studies," he said.

Doctors advocating for more bladder cancer research dollars are well aware of these social and logistical hurdles. But they're still fighting.

"It's not something that Ryan Seacrest is going to get," said Dr. Gary Steinberg, chairperson on the Scientific Advisory Board of the Bladder Cancer Advocacy Network. Steinberg said about 80 percent of his bladder cancer patients are blue-collar workers in industrial fields.

That lack of publicity, Steinberg said, ultimately leads to later diagnoses.

"Patients will have blood in their urine, and they'll be treated with an antibiotic. Their physician might say, 'Oh, it's a urinary tract infection,' and they'll give more antibiotics without examining them," he said.

"All too often by the time patients have been diagnosed with bladder cancer, there's been a 12-13 month delay after the symptoms."