Guest MINDSETTER™ Fachon: A Law for Law-Makers
Sunday, September 24, 2017
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.
Related Slideshow: The Power List - Health and Education, 2016
Russell Carey - A name few outside of Brown’s campus know, but Carey is the power source at the Providence Ivy League institution.
Today, his title is Executive Vice President and he has had almost every title at Brown short of President. Carey is a 1991 graduate of Brown and has never left College Hill.
While Brown’s President Christine Paxson — who is functionally invisible in Rhode Island — is managing alumni affairs and fundraising, Carey is influencing almost everything in Rhode Island.
Top Raimondo Appointment
Nicole Alexander-Scott - MD, MPH, and rock star in the making. As Director of the Rhode Island Department of Health, she is fast developing a reputation as someone in the Raimondo Administration who can get things done. Her counsel and leadership on developing a strategy on opioid addiction has been widely been lauded.
In addition, she has handled the mundane - from beach closings to food recalls - with competency. An expert in infectious disease, it may be time for her to become a strong leader on Zika.
Ronald Machtley - Bryant University's President rightfully deserves to be on a lot of lists, but what few understand is that Machtley’s influence extends far beyond Bryant’s campus in Smithfield. Machtley could make this list as a business leader or as a political force as much as for education.
Machtley is recognized for transforming Bryant University from a financially struggling regional college to a university with a national reputation for business.
Machtley serves on Amica’s Board and the Rhode Island Foundation, and also serves on the Board of Fantex Brands.
Larry Purtill - While Bob Walsh gets the face time as the Executive Director in the media for the NEA of Rhode Island, NEARI President Purtill tends to be the inside man who gets things done.
The teachers' largest union is formidable, but is still reeling from the beat down it took when Gina Raimondo’s pension reform cut the benefits of teachers disproportionately over other employee groups.
Make no mistake about it - not much happens in education in Rhode Island without Purtill's sign-off.
Mim Runey - While Rhode Islanders wait, and wait some more, for development on the 195 land, Johnson and Wale's University's Runey is watching it come to fruition, as JWU is set to open the first completed building on the former Interstate on September 1, when it will host a ribbon cutting for its John J. Bowen Center for Science and Innovation.
Under Runey, JWU continues to establish its foothold as one of the country's top schools for culinary training. Now Runey will oversee the addition of the new building on the old 195 which will house the university's School of Engineering and Design and its biology program.
In 2015, students from the School of Engineering & Design participated in the construction of the Holocaust Memorial on South Main Street, a collaboration between the Jewish Alliance of Greater Rhode Island and the Holocaust Education Resource Center of Rhode Island.
A true community partner in every sense, JWU under Runey's watchful eye is expanding to an even greater presence in Providence.
Chairman of the Board
Edwin J. Santos - The former banker is Chairman of the Board of CharterCare, after having been a top executive at Citizens Bank. He has been a board leader for Crossroads, Washington Trust, Rocky Hill School -- you name it and Santos has helped to lead it.
His best work to date just might be at CharterCare, where he has helped the once fledgling hospital (Roger Williams Medical Center) into a growing hospital system.
Weber Shill - He serves as the Chief Executive Officer of University Orthopedics, or in other words, dozens and dozens of oh-so-confident docs.
Shill has a background in Engineering and a Masters in Business Administration from the Whitemore School at the University of New Hampshire. Experienced in managing medical groups, but this group is big and influential.
Timothy Babineau - President and CEO of Lifespan, Rhode Island's biggest healthcare organization, where financial challenges make the job that much more complicated.
Now, the critics (GoLocalProv included) are raising concerns about the multi- billion dollar organization's refusal to make any contribution to the City of Providence. Lifespan is like General Motors, big and hard to innovate the organization.
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- East Greenwich’s Fachon, Who Fought the FDA for Experimental Treatment, Has Died
- Fachons Lead “Right to Try” Legislative Fight at RI State House