Whip Ackerman bill would aid RI cancer researchers, patients

 

STATE HOUSE – Deputy Majority Whip Mia A. Ackerman has introduced legislation allowing patients and medical researchers access to vital national data and research.

“Rhode Island patients deserve world class cancer treatments and our researchers need access to national data to provide it to them. This bill won’t just bring us up to speed with national medical research, it will allow us to be at the forefront,” said Representative Ackerman (D-Dist. 45, Cumberland, Lincoln). “I am proud to ensure that the scientists developing treatments for cancer patients in Rhode Island have access to every tool available in their fight.”

Modern medical research, particularly cancer research, relies on researchers sharing large data sets of anonymized patient information to compare treatment effectiveness across different population groups. Federal law allows this data sharing, provided the data cannot be traced back to any individual, but Rhode Island law prevents this sharing, which locks out Rhode Island researchers from participating in this national data-sharing.

“The strict requirements in Rhode Island are disadvantaging the people of Rhode Island by stifling research activities,” said Dr. Wafik El-Deiry, director of the Legorreta Cancer Center at Brown University. “We have been falling years behind other states in doing needed research to provide better care for the people of Rhode Island. This is hurting our scientists and our patients.”

The bill (2024-H 7301) would amend Rhode Island law to allow the sharing of anonymized medical research data in the same manner allowed under federal law and most other states. In nearly all cases, patient consent would still be required, but certain research that poses minimal risk would be allowed to proceed under a waiver of consent approved by the internal review board, consistent with federal law.

Rhode Island has unusually high rates for many types of cancer. Researchers like El-Deiry believe access to national data may help them understand why these high rates are occurring, in addition to helping them develop more effective treatments.

A longtime advocate for cancer patients, Representative Ackerman received the 2023 Public Service Award from the American Cancer Society’s Cancer Action Network and Brown University’s Legoretta Cancer Center for her work combating cancer. She has championed many pieces of legislation including a 2018 bill (2018-H 7136) that prohibits minors from using tanning beds, a 2021 bill (2021-H 5432A) to cover preventative colorectal cancer screenings, and a 2022 bill (2022-H 7587A) requiring private health insurers to cover biomarker testing.

“I am thankful to Representative Ackerman for introducing this legislation to make it easier to conduct medical research that involves data sharing,” said Dr. El-Deiry. “This is a minor edit of the existing law that ensures patient privacy while allowing important research to proceed.”

 

 

 

 

A key report shows wholesale inflation slowed last month. The July Producer Price Index shows a rise of zero-point-one percent. The PPI measures prices that businesses receive for goods and services. Economists had been expecting a slightly higher increase, according to a survey by the Wall Street Journal.        Over one-point-three million people tuned into Elon Musk's conversation with former President Trump on X last night. Some technical issues delayed the conversation, but the pair still spoke for over two hours. They discussed the attempted assassination of Trump in Pennsylvania, immigration, Russian President Vladimir Putin, the threat of global warming, and more.        Voters are heading to the polls for primary elections in Connecticut, Minnesota, Vermont, and Wisconsin today. In Minnesota, progressive Congresswoman Ilhan Omar will defend her seat against former Minneapolis City Council member Don Samuels. The contest comes after two other members of the so-called progressive "Squad," Jamaal Bowman and Cori Bush, lost their Democratic primaries this cycle.        Tropical Storm Ernesto isn't expected to hit the U.S. mainland as it heads up the Atlantic Ocean. Current forecasts show the storm will bring heavy rain and flooding to Puerto Rico and Virgin Islands today. The National Hurricane Center says Ernesto will then head northward and into the Atlantic.        A former Colorado clerk is facing up to 22 years in prison for election tampering. Tina Peters was convicted yesterday and will be sentenced in October. Prosecutors argued she let an unauthorized person access Mesa County's voting equipment in 2021 and make a copy of hard drives, as well as pictures of passwords, and then tried to cover it up.        U.S. gymnast Jordan Chiles will not have her appeal heard by the Court of Arbitration for Sport. On Sunday, the International Olympic Committee said it would take away her bronze medal because of a scoring error. Monday, USA Gymnastics said in a statement that it was notified that CAS rules don't allow for an arbitral award to be reconsidered.