McNamara bill would let terminally ill use experimental drugs

Posted 2/5/15

As someone who lost a brother to cancer, Rep. Joseph M. McNamara knows that the most devastating aspect of the illness – for the stricken individual and family members – is dealing with the …

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McNamara bill would let terminally ill use experimental drugs

Posted

As someone who lost a brother to cancer, Rep. Joseph M. McNamara knows that the most devastating aspect of the illness – for the stricken individual and family members – is dealing with the overwhelming despair.

“The one thing everyone tries to hold onto is hope – hope that the individual will get well, hope that some procedure will lead to a cure,” said Representative McNamara (D-Dist. 19, Warwick, Cranston). “I want Rhode Island to do all it can to give these people hope, and while other states have passed or are considering ‘right to die’ legislation,’ I want Rhode Island to give terminally ill patients the ‘right to try’ anything that might help them.”

McNamara, chairman of the House Committee on Health, Education and Welfare, has introduced legislation to allow these individuals to obtain experimental drugs that have not yet been federally approved but which may be in the final stages of FDA testing.

“Right to Try” laws have been approved in Colorado, Michigan, Missouri, Louisiana and Arizona, and some 17 other states are poised to consider such legislation this year.

The “Rhode Island Terminally Ill Patient’s Right to Try Act of 2015,” 2015-H 5093, is currently before the HEW Committee and expected to be heard on Wednesday, February 11. It would establish the conditions for the use of experimental treatments.

“Dying people should not be denied the right to try any means that could ease their pain or keep them alive or help them hold onto hope,” said McNamara.

Terminal patients who have exhausted their conventional treatment options have few, if any places, to turn. They can attempt to enroll in a clinical trial, but many of the sickest individuals do not qualify. The only other option for them is to obtain potentially life-saving drugs by requesting that the U.S. Food and Drug Administration grant them expanded access. But only a few hundred patients are granted such access each year because of the complicated, time-consuming and expensive process currently required by the FDA.

Under the McNamara bill, a terminally ill patient may make a request for an experimental drug and a manufacturer of an experimental drug, biological produce or device may make it available, but is not required to do so. The legislation provides protections for all parties (patients and medical professionals) and insurance companies are also protected because there is no requirement for them to cover the cost of any investigational drugs.

“Terminal patients do not have the time to wait for the kinds of delays associated with federal bureaucracy,” said Representative McNamara. “Terminal patients just want the chance to try something, anything, that might help. It is my desire, through this legislation, to give them hope and, perhaps, to extend or save some lives.”

Among the bill’s co-sponsors are Rep. K. Joseph Shekarchi (D-Dist. 23, Warwick), Rep. Patricia A. Serpa (D-Dist.27, West Warwick, Coventry, Warwick), Rep. David A. Bennett (D-Dist. 20, Warwick, Cranston) and Rep. Grace Diaz (D-Dist. 11, Providence).

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