"If we, as a country, are going to spend $158 billion on cancer care, we should make sure we are getting the most medical value in return. We should not throw money at treatments that don't work," said Robert Field, professor of Health Management and Policy at the Drexel University School of Public Health in Philadelphia.
One of the biggest challenges to policy makers looking to cut costs is in assessing whether a treatment is ineffective or inappropriate. Part of the culture of medicine, experts said, is for patients to expect and subsequently ask for all the care they can, even if that care is extremely expensive and not likely to work.
"Reigning in costs will likely involve changes in the expectations of consumers/patients with respect to receipt of care and changing deployment tactics for providers to reduce unnecessary, inappropriate or wasteful service," said Wolfson. "This is easy to say from a distance, but when a family is notified that a member has a cancer, their first goal is to get the best and most care possible -- and our system tends to oblige."
"As an example, between 15 and 20 percent of cancer patients are getting chemo within two weeks of death, which is unlikely to be very helpful," said Dr. Thomas Smith, a professor of medicine and palliative care at Virginia Commonwealth University's Massey Cancer Center in Richmond, Va.
Smith, who is also an oncologist, said his fellow cancer specialists need to learn more about how to help patients transition from cancer care to end-of-life care as a way to reduce unnecessary costs during a patient's final days.
"Recognizing that point and recognizing it earlier would not only honor people's wishes, it would also save money and reserve that money for all the new expensive drugs that people are going to want," Smith said.
The expensive drugs, he said, are the ones that are effective in fighting cancer and could be available to more people if other costs were lower.
Another cancer specialist said costs can be saved when patients transition back to their general practitioner after treatment.
"If the patient lacks faith in the doctor effectively monitoring her for recurrence, then patients tell me that they will demand a CAT scan, PET CT scan, bone scan, tumor markers and a chest x-ray. That could be $6K and it all is unnecessary and not standard of care," said Lillian Shockney, an associate professor at the Johns Hopkins University School of Medicine in Baltimore, Md.
Karin Gaines definitely hopes cancer costs somehow can be brought under control. Her COBRA runs out soon, and there will be a gap before she is able to get other insurance.
"If I didn't have insurance, I can't even imagine what it would cost," she said.