Kraig Moore is one of the patients helping test experimental cancer treatments through a clinical trials program operated by the Wichita-based Cancer Center of Kansas. The 47-year-old psychologist, who also operates a bed-and-breakfast near Mulvane, Kan., was diagnosed last January with stage 3b metastatic malignant melanoma.
That’s the deadliest form of skin cancer, with a five-year survival rate of only 10 to 20 percent. Until just a few years ago, there was no effective treatment. But last month, Moore got his first treatment with a new drug called Yervoy. He knows it’s experimental, but believes it could at least give him a fighting chance.
“This particular drug seems to be very well-suited with other people who’ve had this type of diagnosis,” he says. “Instead of using a chemical process to fight melanoma that already exists, it has my immune system becoming aware of melanoma as it occurs and attacks it before it becomes tumor-sized. It makes the survival rate at five years much more encouraging.”
The experimental drug, given once every three weeks, carries a staggering price tag — $30,000 a shot. But Moore has access to the drug at no cost, through a clinical trial funded by the National Cancer Institute. It’s one of many being conducted by the Cancer Center of Kansas under the NCI’s community-based clinical trials program.
Approximately 60 cancer treatment centers across the country participate in the program, which is for providers who are not affiliated with university medical centers. Wichita oncologist Shaker Dakhil runs the Kansas program, which operates in 16 locations statewide.
“I think the program started in the mid-1980s, and we do around 800 patients on clinical trials per year, which is one of the biggest in the country,” he says.
Dakhil says that’s about four times as many patients as The University of Kansas Cancer Center enrolls in NCI trials every year. But that could soon change.
Budget pressures are forcing NCI to reduce the number of participating treatment centers from 60 to 40. Dakhil hopes that his center will continue to be part of the program but there are no guarantees.
“The application is being discussed,” Dakhil says. “We don’t know who are the 40 who’s going to be awarded those awards, and we don’t know the amount. They promise that instead of being $2,000 per case it’s going to be $4,000 per case, but they’re going to ask us to do half the amount.”
That would mean only 400 Kansas patients would get access to clinical trials through the program, instead of the current 800 a year. But Dakhil says the new funding formula will cover more of the treatment, administrative and data collection costs than the current program.
“When I put a patient in Dodge City on a clinical trial, is there a clinical trial nurse in Dodge City?” Dakhil asks. “No. Whose nurse is taking care of the data? My nurse. So who pays for that nurse in Dodge City? Me. And I do it with a smile on my face. That’s part of the contribution to science.”
Dr. Richard Schilsky of the American Society of Clinical Oncologists also has concerns about the clinical trials program. But his are more focused on patients than participating providers. He says without increased funding from Congress, the coming changes will mean that fewer Americans will get the fighting chance that patients like Moore are getting.
“The National Cancer Institute is capping the total number of adult patients who can be enrolled in the program nationally at only about 12,000 people, which is roughly half of the number of patients who’ve been enrolled historically in this program,” Schilsky says. “So what that’s going to do is to really limit the opportunities for cancer patients to participate in NCI-funded clinical trials.”
Those concerns aside, Dakhil remains committed to the research. And he’s keeping his fingers crossed that the Cancer Center of Kansas will still be part of the clinical trials program when the NCI reduces the number of participating providers.
A decision is expected in August.