Cancer groups raise alarm about losing funds to track California cases

Cancer researchers fear that shrinking funding for a program that tracks cancer cases across California could threaten its future.

The California Cancer Registry gathers information about cancer cases diagnosed in the state, providing crucial information for researchers. The data have helped detect rising cases of breast cancer among Japanese women who moved to the United States; linked pesticides to brain tumors in children; and pinpointed racial disparities in cancer diagnosis and outcomes.

“Without it, we’re just going to be blindfolded in our ability to push back against this disease,” said Matthew Marsom, senior vice president for program and public policy at Public Health Institute, which operates one of the regional registries in the state program.

The program has relied in part on state tax revenue from cigarette sales under Proposition 99, a 1988 ballot measure that boosted taxes by 25 cents per pack. As that revenue has fallen, the cancer registry program is expected to see a budget decrease of $1.6 million, driven largely by the decline in tobacco sales, according to figures provided by the California Department of Finance.

State officials say the budgeted money that flows through the state for the program — including state funds and some federal money — is slated to decrease from roughly $12.2 million to $10.7 million.

Program representatives say that a portion of that funding goes to the three regional registries for their operations.

They argue that the loss in state funding could be magnified dramatically if it jeopardizes federal money from the National Cancer Institute, which is not included in the state budget figures: Marsom said the institute is providing roughly $13 million this budget year to the California registries through contracts spanning a decade, which require the programs to match a specific portion of those federal dollars through other funds.

“The risk is that if we’re not able to meet those requirements … we will lose those federal funds,” Marsom said.

And if the California programs cannot provide timely and complete data, “ultimately we will be at risk of losing our federal funding because we can’t deliver what’s required,” said Lihua Liu, director and principal investigator with the Los Angeles Cancer Surveillance Program. The L.A. registry is run out of USC in collaboration with the California Department of Public Health.

As of Tuesday evening, Marsom said that program representatives had met with California Department of Public Health staff and were told that “they believe they will be able to find enough money to keep the regional cancer registries flat funded for the coming year,” although “there was not an absolute commitment.”

CDPH did not immediately respond to questions late Tuesday about whether the registries would remain funded at current levels.

If state funding falls, Liu said her program might have to slash hours for its staff. Those employees identify cancer cases that need to be reported to the registry for some medical facilities that contract with the L.A. program; they also make sure that when one cancer patient visits more than one hospital, the registry doesn’t end up with duplicate reports for their case, Liu said.

Dennis Deapen, former director of the Los Angeles Cancer Surveillance Program, said that the L.A. program has also had analysts who examine cancer risks and diagnoses to “gain the knowledge and share the knowledge of those patterns, not just perform the operation of collecting the data.”

Faulty or incomplete data could also compromise research that relies on the registry. Its data has been crucial in identifying racial and ethnic gaps in cancer occurrence and outcomes, as well as helping researchers reach out to patients and survivors to participate in studies on those disparities, said Anshu Shrestha, senior epidemiologist at the Cancer Registry of Greater California.

For instance, “African American men are almost twice as likely to get prostate cancer, and the prostate cancer in this population tends to be of more aggressive form,” but the reasons are “not well known,” Shrestha said during a May presentation.

To better understand why, researchers have been gathering information from Black men affected by the cancer about possible factors in their lives, as well as collecting samples of saliva and tumor tissue.

The American Cancer Society Cancer Action Network has asked for state legislators to instead increase the funding allocation. So has Assemblymember Wendy Carrillo (D-Los Angeles), who warned in a March letter that if the federal funding was lost, “cancer surveillance in California would not exist.”

Carrillo instead called for the state to bolster funding for the program through its general fund, saying that cancer surveillance had already been strained by “flat funding” as costs rose and the programs faced new responsibilities to carry out mandated changes in how cancer cases are reported.

“It would be one thing if the state said, ‘We can’t afford it, we’re broke,’” Deapen said, but he and others stressed that California’s budget is projected to have a multibillion-dollar surplus through next summer.

The timeline for budget changes is short, as lawmakers must send a completed spending plan to Gov. Gavin Newsom by June 15. Even if the state manages to keep funding flat for the program, Marsom argued that a longer-term solution is needed as tax revenue tied to cigarettes is expected to keep falling.

Times staff writer John Myers contributed to this report.