By Rachel Dornhelm
More than a million Californians are living with cancer, and a new report from the California HealthCare Foundation (CHCF) takes a look at how the disease has affected the population over time.
Stephanie Teleki, senior program officer at CHCF, says some of the most welcome news is about childhood cancers. While the likelihood of a child developing cancer has crept up, the rate of children in the state who die from cancer each year has decreased 21% over the last two decades.
Overall — looking at kids and adults — cancer mortality rates have fallen 22 percent since 1989 and rates of new cancer diagnoses have dropped 9 percent.
On the more sobering side, the report found persistent disparities across race. For instance the mortality rates in California for African Americans were 30 percent to 90 percent higher than in other groups for all cancers. And despite the fact that whites are more likely to be diagnosed with breast cancer, African Americans’ death rate from the disease is 40 percent higher. The inequity holds for prostate cancer, too: black men are two times more likely to die from that disease than whites.
The survey also looked at end of life care and cancer. CHCF took up the general issue of end-of-life care earlier in the year with a survey. The report showed that while 70 percent of Californians want to die at home, only 32 percent actually do so. Most Californians die in a hospital or nursing home.
Teleki says that has disturbing implications for cancer care in the state.
“Obviously the fact that California is 44th in the nation in the use of hospice care for cancer patients is very concerning,” she says. “We’re underutilizing end-of-life care — and especially hospice care — for cancer patients.”
Yet despite all the numbers in the new report, Teleki says it was very hard to find data for the report about cost and quality of cancer care in California.
“The California Cancer Registry is one of the most highly regarded state registries … so it is doing a great job doing what it was designed to do, which is be a public health surveillance tool,” says Teleki. “When it was created we were living in a different era. Now fast forward 20, 30, 40 years, we’re now very focused on quality measurement, transparency those kinds of things and that database wasn’t designed to do that.”
Teleki says an all-payer claims database (APCD) is one tool that the state could implement to start collecting information on cost and treatments. These so-called “rich datasets” would include information from people who have employer-based health insurance, Medicaid, Medicare or are uninsured. On the treatment side, it would include everything from inpatient care to outpatient care; medical and dental treatments.
States that have all-payer claims databases include Utah, Tennessee, Minnesota and Maine. Colorado is launching one this fall.
This post has been changed to reflect an update in the CHCF’s numbers regarding childhood cancer mortality.