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Guest MINDSETTER™ Fachon: A Law for Law-Makers

Sunday, September 24, 2017

 

Eugene "Neil" Fachon

No committee-chairman or committee should have the power to kill a bill that received overwhelming support from the other side of the General Assembly. Here's an example of why:

Subsequent to Eugene "Neil" Fachon's death after a prolonged struggle with a rare and "incurable" form of brain cancer, we worked with House Representatives McNamara and Giarrusso to help draft a "Right to Try and Right to Continue" bill for Rhode Island – HR H5676. Had such a bill been in place when Neil needed to be hospitalized, he would have been able to continue taking the experimental treatment which held his tumor at bay for several months (well beyond the prognosis he received from DANA Farber and Mass General). As it was, Rhode Island Hospital refused to allow Neil's continued experimental treatment while hospitalized there. "Against policy." It was then Neil's tumor resumed growing aggressively.

We cannot know if Neil would have lived any longer had he been allowed to continue his treatment, but the hospital's decision will leave us with that nagging question for the rest of our lives. Under the circumstances, is it any wonder we hoped to see Right to Try legislation passed in Rhode Island? Such a bill would enable anyone caught in Neil's predicament to continue his or her experimental treatment – barring unmanageable complications – while hospitalized. Though small consolation for the loss of a son, this would have made a legacy Neil would have been proud of.

The House side of the General Assembly passed HR5676 on April 13, 2016. They voted for it unanimously! We were delighted of course, but we knew the bill would also require the Senate's approval, which meant it would first have to pass through the Senate Committee on Health and Human Services. We sent several communications to that committee, and on June 15, 2016 my wife and I testified on behalf of Right to Try. One person stood against it. She effectively said, "We should trust the FDA." (This would be the same FDA we had to fight in Federal Court just win back Neil's right to continue the clinical trial they wanted to halt retroactively.) The committee chairman seemed predisposed to the FDAbacker's testimony, and as committees tend to defer to their chairman, HR5676 was held for further discussion. Killed.

What happened to HR H5676 – being extinguished by the opinion of one person or committee – should never happen to any bill which enjoyed such overwhelming support from the opposite side of the General Assembly. "Right to Try" should have received full debate in the Senate. Given that we live in a State where a "Woman's Right to Choose" is held paramount, what are the odds the Senate would have found a terminally-ill patient's right to choose any less imperative? On the strength of that argument and the bill's unanimous approval by the House, Right to Try would probably be law today – and doubly so given that 37 other states have already passed similar legislation, providing ample precedent!

Some might say the Senate committee's decision to "hold" the bill was just exercising their prerogative as the "deliberative" body, but common sense suggests it more closely resembled an almost callous disregard for the will of the House. This leads me to propose new legislation, or an amendment to Rhode Island's Constitution if needs be:

Any bill receiving 75% or more support from either side of the General Assembly must automatically be sent to the opposite side for debate and a vote by the full body within 30 days or before the close of the session. The associated committee may make recommendations, but it may not hold the bill.

Some might argue this measure would tamper with "separation of powers." No. It would not limit either branch's ultimate authority to determine the fate of any proposed legislation. What it would do is preclude any one person or committee from unilaterally thwarting the overwhelming sentiment of the General Assembly's opposite branch. Please ask your Representatives and Senators to support this proposal.

 

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