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Bill Would Prevent Delays in Reporting Research

by Patti Singer
Wed, Apr 8th 2015 11:00 am
Democrat & Chronicle  [ View Original Article ]

Two Rochester-area representatives have reintroduced federal legislation that would have cancer researchers making timely reports on results — good or bad — of clinical trials.

Rep. Tom Reed, R-Corning, and Rep. Louise Slaughter, D-Fairport, again threw their support behind the Clinical Trial Cancer Mission 2020 Act.

Reed first introduced the bill in June 2013 with Slaughter as a co-sponsor.

The announcement came at a news conference Wednesday.

Clinical trials are the key to turning cancer from a fatal disease to a chronic condition, said Gary Mervis, chairman and founder of Camp Good Days and Special Times, who also started Cancer Mission 2020.

"Trying to make cancer a chronic illness by the end of the decade will come from more clinical trials, getting more prospects for clinical trials, getting more doctors educated about clinical trials," he said.

Reed, who wrote the bill, said that cancer touches everyone and recounted that his mother died of lymphoma. Slaughter said that Congress needs to demand accountability and to make sure that funding is helping as many people as possible.

Mervis said clinical trials have led to advances in treating childhood cancer, and the same progress could come with adult cancers. But results have to be available.

"We're wasting time and causing unnecessary duplication because sometimes we can learn as much from research that fails as from research that is a success," he said. "But we need to know what has been tried and what happened so you can go back and tweak things and change hypothesis and come up with a different result."

The idea for legislation came from a cancer summit that Mervis held with legislative leaders nearly four years ago, shortly after he started Cancer Mission 2020.

He said there is a bill to require the results of cancer research to be published. Failure to do so can result in a fine. But he said some have interpreted it to mean only successful research, and it's unenforced.

Like its predecessor, H.R. 617 would be aimed at researchers who receive federal money. The bill would amend the Public Health Service Act to enhance the reporting requirement and enforcement for the clinical trial registry data bank. Failure to comply could result in loss of future funding and the requirement to repay what the government provided.

The bill is not restricted to cancer research.

Mervis said the bill has bipartisan support in the House and proponents are looking for Republican and Democrat backing in the Senate. "We hope to move the legislation as best we can."

PSINGER@DemocratandChronicle.com

H.R.617 - Clinical Trial Cancer Mission 2020 Act

To amend the Public Health Service Act to enhance the clinical trial registry data

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Petition to Support Cancer Mission 2020, the movement to build awareness,

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