Indiana’s only comprehensive cancer center could lose its National Cancer Institute designation if the state doesn’t invest in cancer research. A new state law establishes a cancer research fund — but Indiana hasn’t dedicated any money to it.
NCI reevaluates the designation for cancer centers every five years. The designation can play a role in patient access and funding. One factor the organization considers is state financial support.
Dr. Kelvin Lee, director of the Simon Comprehensive Cancer Center at Indiana University, said while half of states have a budget line for cancer research, Indiana hasn’t dedicated state funding to the center or to cancer research in general. Lee said HEA 1453 establishes a fund, but that’s just the first step.
“We've established the bucket,” Lee said. “But now we have to actually get the funding to go into that bucket.”
Lee said state lawmakers couldn’t put money into the fund due to the “bleak” budget forecast. He said the center has until 2029 to show the state’s investing in research or patients could lose access to vital services.
“If you're a cancer patient and you don't have access to clinical trials and cutting edge clinical medicine in cancer, you're getting second-rate medicine,” Lee said.
The NCI designation comes with more than just prestige that can give an institution credibility. NCI-designated cancer centers not only give patients access to new treatments, they can also help make those treatments affordable.
“There is a law that if you are an NCI-designated cancer center and you do clinical trials, Medicare is obligated to pay for those clinic patients on those clinical trials,” Lee said. “They can't be denied access or reimbursement for a patient on a cancer center clinical trial. If you lose that NCI designation, that goes away. So all of a sudden, you have a large number of patients that now will get billed for these things.”
Lee said, even without direct funding from Indiana, the cancer research fund accomplishes the most important piece: demonstrating Indiana believes cancer research is important.
The fund is focused on breast and pediatric cancer and is the result of two pieces of legislation combined toward the end of session. Lee said while cancer researchers at IU supported the effort, patients were the driving force behind getting the legislation through.
“We really believe that that's what's going to drive the effort forward,” Lee said. “It's going to be the patients and their families and their stories that are really going to have the biggest impact on the state government.”
Lee said the future of state cancer research funding is looking up as a result of work done by advocates and families this year.
“I am on the more optimistic than cautiously optimistic side,” Lee said. “I think that the thing that has been very, very encouraging is really the groundswell of support that we have gotten from the Indiana legislature.”
Lee said he was expecting more resistance from lawmakers, but he found most were surprised to learn Indiana didn’t support cancer research.
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He said the cancer center not only wants to show investment from the state by 2029, but also show that the investment has a positive effect on Hoosiers. While the comprehensive cancer center at IU has had this designation without state cancer research funding since the 1990s, Lee said the role of cancer centers has grown and changed over time.
“When cancer centers were originally envisioned, it was a mechanism to bring people that were doing cancer research, that maybe be scattered all over a university, bring them all into one community,” Lee said. “The idea that our responsibility is all Hoosiers is a relatively more recent development.”
With that responsibility, Lee said state investment in cancer research became a bigger consideration for NCI because it could indicate state support for successful research.
He said funding could be used in a variety of ways to support Hoosiers.
“It can be, for example, our ability to train up and coming cancer researchers or develop their careers,” Lee said. “It could be new therapies.”
Lee also said the funding could go toward research into cancer detection, epidemiology or research into how treatment affects different people.
He said that while he’s optimistic about the future of state funding, the future of federal funding is a bigger question.
“Now there is, for lack of a better word, chaos in the medical research arena,” Lee said.
Lee said he and other cancer researchers are concerned about how federal changes and cuts will hurt the research space.
While this has an immediate effect on research projects and clinical studies, Lee said the federal cuts will likely also affect training grants or programs designed to bring people into the field.
“A long-term concern is that we would lose a whole generation of scientists,” Lee said. “They would not go into science or do something else or whatever, and we would lose a generation of scientists. And when you lose a generation you can't just buy that back.”
Lee said there is a lot of uncertainty caused by other changes with NCI and the National Institutes of Health.
“We were fortunate to have our designation renewed before all this happened,” Lee said. “There are a number of cancer centers are caught up in this turmoil that really don't know what's going to happen to them.”
Lee said IU’s cancer center has time to see how things play out on the national scale, but this is already a concern the center is considering for its next renewal.
Abigail is our health reporter. Contact them at aruhman@wfyi.org or on Signal at IPBHealthRuhman.65.