When Dr. Wafik El-Deiry, one of the nation’s top physician-scientists and oncologists, came to Rhode Island in 2019, he was eager to help the Ocean State realize its untapped potential to become a leader in cancer care and research.
Rhode Island has some of the highest cancer rates in the country, but with an Ivy League university and top-tier physicians at its hospitals, the state also has valuable resources at its disposal to treat and research cancer, according to El-Deiry.
“I came here because it’s a very unique place,” said El-Deiry, who arrived to lead the effort to establish a regional cancer center at Brown University. “Rhode Island is not part of anybody’s catchment area, nobody’s going to come in and solve these problems. But we have a world-class university and amazing clinicians.”
In the spring of 2020, a major milestone came when the Legorreta Cancer Center was launched at Brown. The cancer center builds upon the joint program in cancer biology at Brown and Lifespan Corp. and was boosted by a $25 million gift from life sciences entrepreneur and investor Pablo Legorreta and his wife, Almundena.
El-Deiry, director of the Legorreta Cancer Center, says there has been a history of cancer-focused collaboration among Brown and the state’s leading health systems – Lifespan and Care New England Health System – but the cancer center has brought these efforts to another level.
While the center’s endeavors and successes in its first five years are certainly worth celebrating, El-Deiry believes more can be done.
“Rhode Island is behind on investments in cancer research and behind on data sharing and these things are hurting the progress that’s needed,” said El-Deiry, who is also an attending physician in hematology-oncology at Lifespan.
It’s possible for researchers to compare data within health systems and different communities in Rhode Island. But if researchers want to expand their research scope, they must be able to share data, he says.
Federal law allows researchers to share “de-identified” patient information retroactively without patient consent, meaning data that was collected previously and that cannot be traced back to a particular person.
But this kind of data sharing is prohibited under Rhode Island’s law and El-Deiry is working with state lawmakers, including House Deputy Whip Mia Ackerman, D-Cumberland, to change it.
Ackerman says she first introduced a bill in 2023 that would change what she deemed “hyper-HIPAA” laws – in reference to the Health Insurance Portability and Accountability Act – and put Rhode Island in line with federal law to allow data sharing while maintaining patient privacy and confidentiality.
The bill passed the House last year but died in the Senate. Ackerman says the senators didn’t seem to think that “de-identified” patient data meant it wasn’t possible to trace back to a single person. But Ackerman, who has successfully championed cancer-related legislation such as requiring health insurers to cover preventative colorectal cancer screenings, is hopeful the legislation will be approved this session.
“To me, it was a no-brainer,” Ackerman said. “I’ll keep working on cancer bills because it’s necessary – if you don’t have your health, then nothing else matters.”
Along with data sharing, El-Deiry says more state funding is crucial to treat and understand cancer in Rhode Island, which ranks among the top 10 states for cancer incidences.
“We need to be doing things here in Rhode Island,” El-Deiry said. “We need to bring the technologies, bring the experts and get going on things without losing a lot of time because it can take years to get these answers.”
A key initiative El-Deiry has hoped can garner state funding is pursuing a cancer center designation from the National Cancer Institute, which is the highest federal rating a cancer center can receive.
Achieving the designation is a multiyear process that is expected to cost more than $1 billion, including investments that have already been made, as well as philanthropy, state support and federal grants, El-Deiry said in a letter sent to Gov. Daniel J. McKee and other state leaders outlining requests for cancer funding in the next fiscal year’s budget.
Though it seems like a large investment, El-Deiry says he is confident it is something well within Rhode Island’s reach and that could open new doors for the state’s cancer innovation efforts. Not only does the designation mean access to certain funds from the NCI, but it also comes with a level of credibility that draws patients and researchers, and boosts the ability to run clinical trials. Not to mention, reducing cancer rates means healthier people and more research and marketable discoveries add jobs, he says.
McKee has recommended amending the fiscal 2024 state budget to add $135,000 to support the state’s cancer registry and maintaining the additional funding in fiscal 2025. His proposal also would change a part-time position to a full-time job at the state-funded Women’s Cancer Screening Program in fiscal 2024. Still, the additional money comes up short of what El-Deiry was hoping for, and he plans on continuing his advocacy.
“We’re really well on our way,” El-Deiry said. “But at the same time, we want new discoveries and we want them to have an impact on patients and the community to reduce the burden of cancer in the state.”