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Thursday, January 5, 2017

21st Century CURES Act

In The Politics of Autism, I write about medical and scientific research.

Last month, President Obama signed the 21st Century CURES Act.  My friend Mike Johnson writes at New GOP Forum:
The legislation was the result of old-fashioned, down-in-the-trenches, sausage-making compromises and trade-offs. Sausage is good once it gets to the dinner table.
CURES Act is law because of the dogged work of its two chief sponsors Republican Energy and Commerce Committee Chairman Fred Upton of Michigan and Democrat Committee member Diana DeGette of Colorado. Health Subcommittee ranking Democrat Gene Green of Texas and a Subcommittee member, Republican Tim Murphy of PA, played key roles, as did Chairman of the Senate Health, Education, Labor and Pensions Committee, Republican Senator Lamar Alexander and the Committee’s highest ranking Democrat, Senator Patty Murray of Washington. The White House was seldom engaged.
Those at both ends of the political spectrum who believe the word “no” is the sum and substance of good policy making, were simply outmaneuvered, right up to the end when an innovative application of procedural rules was used to get the legislation across the finish line in the Senate, just days before the 114th Congress ended.
The legislation was also far more expansive than Alexander reported, providing for quicker approval of drugs, funding for the states to fight opioid crises, and more aid for research into the causes of Alzheimer’s, one of the most debilitating and expensive diseases in America.
Some media did cover the passage and signing of the Cures Act. Very few even mentioned Upton or DeGette, not even the once venerable Associated Press. The two legislators and their colleagues, however, accomplished a small public policy miracle in an atmosphere of partisan gridlock, ideological extremism, and a virtual breakdown in the relationship between the Legislative and Executive branches of government. They saw a need, created an opportunity and got it done. Thomas Edison once said that: “Opportunity is missed by most people because it is dressed in overalls and looks like work.”
Public policy is like that. It is work, oftentimes tedious and boring. Chances of success are slim, and you seldom get anywhere when your chief concern is who will get the credit.
Autism Speaks worked closely with grassroots advocates and champions in Congress to include provisions that would potentially accelerate biomedical innovations for people with autism and improve patient input in the drug approval process.
“There is no doubt that more funding is needed to advance research into causes and better interventions for autism,” said Angela Geiger, Autism Speaks president and CEO. “This legislation provides funding for research programs that will help better inform our understanding of autism.”
To date, Autism Speaks’ MSSNG project has sequenced more than 7,000 whole genomes from families affected by autism – making it the world’s largest genomic database on autism. More than 90 leading investigators have already received approval for accessing the database and its cutting-edge analytic tools to advance their work, deepening understanding of autism and paving the way for personalized treatments. Through the data and new knowledge provided by MSSNG, Autism Speaks is powering the translation of basic research into improved diagnostics, therapies and life supports.
Precision medicine is a game-changing opportunity for autism,” said Mat Pletcher, Autism Speaks interim chief science officer. “We are learning much about the potential to segment it into many disorders through our MSSNG genome project. This legislation will not only fuel inquiry in this area, but brings the patient in to inform the regulatory process to better understand treatment need.”