The failure of breast cancer patients to enroll in clinical trials is hampering the effort to bring new treatments for the disease, the most common cancer among women, South Carolina advocates said.
This October, 26 years after the first Breast Cancer Awareness Month, local advocates are calling on patients to strongly consider participating in clinical trials when recommended by doctors to treat their disease.
Breast cancer incidence and mortality rates have not shifted significantly since the early 1990s. In 1991, 119 American women died of breast cancer each day. That figure was
estimated to be 110 last year, according to the National Breast Cancer Coalition, an advocacy and lobbying group that calls the decrease an accomplishment but "far from success."
The lack of progress can be attributed in part to a lack of new information about the causes of the deadly and difficult-to-treat metastatic types of breast cancer that spread to other parts of the body, according to the National Breast Cancer Coalition, which wants a sharper focus on research and vaccines for cancer and has started an initiative to eradicate the disease by 2020.
A breast cancer specialist at the Medical University of South Carolina said, however, that new developments in research won't have the impact advocates demand without help from patients. New treatments must be tested to determine their effectiveness, but clinical trial participation historically has been low, Dr. Megan Baker said.
"All the research in the world and all the money thrown at it doesn't matter worth a lick if there's no people to try it on," Baker said.
MUSC's Hollings Cancer Center, which arranges participation in its clinical trials at other medical facilities around the state, has a 12 percent rate of participation in its trials. That's higher than the 5 percent national average, but far below the expectations of Baker and her colleagues.
A clinical trial at MUSC for a breast cancer vaccine -- a therapy similar to the one sought by the National Breast Cancer Coalition -- closed down earlier this year because no patients agreed to try it, Baker said. The trial had been open for three years.
The barriers? Perception, cost and distrust, she said.
"People don't see it as an advantage and they're put off by them," Baker said.
In the South, Baker said, doctors have the added obstacle of overcoming the legacy of Tuskegee, the U.S. government's 40-year study of untreated syphilis in poor, rural black men in Alabama who thought they were receiving free health care. The study, which ended in 1972, might have contributed to black patients' resistance to participating in biomedical research, some researchers say.
Encouraging participation among all patients has been challenging, Baker said.
"The vast majority are very low-risk, but most patients don't understand that," she said.
Many clinical trials involve the so-called "standard-of-care" treatment and one additional variable.
That's where the cost issue factors into the decision for some patients. Some insurers traditionally have not covered the standard-of-care treatment for patients participating in clinical trials -- even though they would cover such treatment without the trial treatment. The state's biggest insurers signed a voluntary agreement last year committing to pay for the baseline therapy among clinical trial patients. Still, some smaller insurers have not signed on to the agreement, said Hollings spokeswoman Vicky Agnew.
S.C. Sen. Robert W. Hayes, a York Republican who was involved in discussions that led to the insurers' agreement, summed it up this way:
"People doing these things are on the cutting edge," said Hayes, whose son had cancer. "It's how progress is made, and it could be a good thing for you, too."
Some of the scheduled events for Breast Cancer Awareness Month:
--There will be a benefit concert for breast cancer awareness at 7 in the Visitor Center Bus Shed, 375 Meeting St., Charleston. Several bands will perform to benefit the Susan G. Komen for the Cure Foundation. Cost is $15. There will be beer and wine, along with barbecue plates for sale.
--Wet Willie's will host a breast cancer awareness party at 8 p.m. at 209 East Bay St. The event, which features live music, is free. Pink embroidered ribbons will be handed out for every $2 donation to the Susan G. Komen for the Cure Foundation. Pink beads will be provided for every $1 donation to the organization. Pink koozies also will available, with $3 being donated for each sale.
Annual Lowcountry Race for the Cure, Family Circle Cup Stadium, Daniel Island. Call 556-8011 or go to komenlowcountry.org
Free screenings during the annual Roper St. Francis Healthcare Ladies Night Out. Men are welcome too. From 5:30 to 7:30 p.m. at Roper Hospital, 316 Calhoun St., Charleston. 402-CARE (2273).