WASHINGTON, DC – Congressman Mo Brooks (AL-05) today delivered a House floor speech
Steve Mayfield
calling for a vote on Senate Bill S. 204, the Right to Try Act. S. 204 gives terminally ill patients the right to try experimental treatments that have not yet completed the Food and Drug Administration’s lengthy and complex full approval process that can take decades.
Congressman Brooks was inspired to address the House by the story of Steve Mayfield, a respected high school football coach at Central High School in Lauderdale County, Alabama, who, in March 2017, died after a lengthy fight with both Lou Gehrig’s disease (a.k.a ALS) and a federal bureaucracy that denied him the right to try potentially life-saving experimental treatments.
Full text of the speech follows:
Mr. Speaker, roughly four years ago Steve Mayfield was a respected high school football coach at Central High School in Lauderdale County, Alabama, who, in October 2014, was diagnosed with ALS.
Steve Mayfield bravely fought his terminal disease and kept a smile on his face throughout his lengthy three-year battle and ordeal.
In a land of freedom and liberty, Steve Mayfield would have had two choices. On the one hand, he could abide by Food and Drug Administration regulations and recommendations . . . and die. On the other hand, Steve Mayfield could try experimental treatments that gave some hope of beating ALS and extending Steve Mayfield’s life.
Unfortunately, when it comes to terminal illnesses in America, there is no freedom or liberty.
Steve Mayfield not only had to fight ALS, he also had to fight the Food and Drug Administration before he could try experimental but potentially life-saving treatments.
Sadly, Steve Mayfield lost both fights. Steve Mayfield was barred by the federal government from trying possibly life-saving treatments and, not long ago, passed away.
Steve Mayfield’s son, Brooks Mayfield, of Florence, Alabama, was with his father when he passed away.
It is in that vein, Mr. Speaker, that I call on the House to have a floor vote on Senate Bill S. 204, the Right to Try Act, which passed the Senate last year, that restores the right of terminally ill patients to try experimental treatments that may save their lives.
Brooks Mayfield’s father might be alive today if the Right to Try Act had been the law of the land.
Mr. Speaker, we must remember who we are as Americans. Our ancestors fought the Revolutionary War over liberty and freedom, yet, today in America, patients who are 100% certain to die are denied the freedom, the liberty, the right to decide for themselves whether to try experimental treatments that may save their lives.
Every day in America, terminally ill patients and their families are told there are no options but death.
By way of background, fewer than 3 percent of terminally ill patients in America have access to investigational treatments through clinical trials.[1] While the Food and Drug Administration grants compassionate use waivers, meant to allow terminal patients access to experimental drugs, only about 1,500 waivers were granted in 2016.[2]
What are other terminally ill Americans to do? Nothing? Just waste away and die without a fight?
Patients shouldn’t have to give up their liberty, their freedom, their fight against terminal illness merely because the FDA says so.
And terminally ill patients shouldn’t have to beg the FDA for a waiver, forcing patients to fight the federal bureaucracy, when they are already fighting for their lives.
The Right to Try Act gives terminally ill patients access to treatments that have successfully completed the FDA’s Phase 1 approval requirement but not yet completed the FDA’s lengthy and complex full approval process that can take decades.
Sadly, sometimes when treatments and drugs reach final approval, it is too late for too many patients and their families because the terminally ill patient has already died.
Mr. Speaker, given the stark contrasts between life and death, between freedom and federal dictates, between hope and hopelessness, the House should take up and pass the Right to Try Act, thereby giving a chance for life to terminally ill patients and their families.
The United States Senate overwhelmingly passed Right to Try legislation last year. It is time for the House to do the same, thereby restoring freedom, liberty and hope, and giving terminally ill patients across America a better chance to live.
Mr. Speaker, I yield back the balance of my time.
[1] “An estimated 97 percent of the sickest patients are ineligible for or otherwise lack access to clinical trials.” Policy Report, Goldwater Institute, No. 266, February 11, 2014. Page 7. https://goldwaterinstitute.org/wp-content/uploads/cms_page_media/2015/1/28/Right%20To%20Try.pdf
[2] U.S. Food & Drug Administration, “Expanded Access INDs and Protocols 2009-2016”. https://www.fda.gov/NewsEvents/PublicHealthFocus/ExpandedAccessCompassionateUse/ucm443572.htm
Media Release/Congressman Mo Brooks/Clay Mills
