Karin Gaines of Rockford, Ill., is battling breast cancer for the second time in her life. She's taking two different medications to treat her disease, which also has spread to her bones.
In addition to the physical and mental toll her disease takes on her, it's also very difficult for her financially. Though she says she's fortunate to have COBRA insurance, her out-of-pocket costs are steep.
"COBRA is really expensive, and I still have out-of-pocket costs at the beginning of the year. Plus, every time I go in for a test or to see the doctor, there's a $30 co-pay," said Gaines, who is 56. "Last year, my out-of-pocket cost was $10,000."
Gaines knows she isn't alone, that there are many other cancer patients who are uninsured and have to foot enormous bills on their own.
Those costs, according to a new study by the National Cancer Institute (NCI), are expected to soar to $158 billion by the year 2020.
Researchers led by Angela Mariotto, a statistician in the NCI's Division of Cancer Control and Population Sciences in Bethesda, Md., analyzed available data on the number of new cancer cases, survival rates after diagnosis and costs of care, and projected a staggering 27 percent increase in the cost of cancer care over the next decade.
"This number is a bit higher than we expected," said Mariotto.
She said the data are estimates that assume the number of new cancer cases remains the same over time, treatment-related costs remain the same and the population ages at the rate projected by the U.S. Census Bureau.
The NCI study also estimated that if costs in the early and late stages of cancer treatment rise by two percent a year, which is consistent with current trends, the projected cost of cancer could be as high as $173 billion a year.
Experts said the increase has a number of causes, including increased cancer survival, a growing number of older Americans, treatment advances and the desire to offer and receive the best and most care.
One of the main reasons for the skyrocketing cancer price tag is the growing number of Americans who are getting older.
"Cancer is a disease that affects more older people than younger, so the burden will be greater in 2020 than it is today," said Mariotto.
NCI estimated that 13.8 million cancer survivors were alive in 2010, and more than half were 65 or older. If the number of new cancer cases and survival rates stay the same, by 2020, there will be 18.1 million cancer survivors.
"The trend reflects the challenge, often discussed by economists, of balancing the realities of an aging population that is living longer due to improved medical care, with the costs of these people living longer, the costs of more of them acquiring diseases requiring treatment," said Jay Wolfson, professor of public health and medicine at the University of South Florida in Tampa.
Drugs and Other Treatments Very Expensive
Health policy experts also attributed the rising costs of cancer to new treatments, some of which may not be worth the hefty expense.
"The key reason is technology -- the relentless pursuit of new tools, drugs and devices that drive up utilization," said Dr. David Nash, dean of the Jefferson School of Population Health at Thomas Jefferson University in Philadelphia. "We are doing more things to more people at a greater intensity than any nation in the world."
"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.