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A McDonough, Georgia man who was the first to fight of a debilitating and deadly disease points out the reasons why “right to try” legislation that is being considered in North Carolina needs to succeed, according to a Washington Post op-ed piece.
“Millions of Americans are dying of terminal illnesses, while treatments for many of those illnesses exist and are being safely used in clinical trials,” the Washington Post editorial published in January 2017 said. “But most patients cannot get them because the FDA has not yet determined them to be effective and approved them for general use. And bureaucratic obstacles limit the number who can get access on a 'compassionate use' basis. While there is no guarantee such experimental treatments will work, most dying Americans are not looking for a guarantee — they just want a chance.”
The op-ed piece was about Ted Harada, a former manager at FedEx who was about 40 when he first noticed while playing Marco Polo with his kids in the family swimming pool symptoms that would later be diagnosed as a horrifying and debilitating disease.
“Amyotrophic lateral sclerosis, or Lou Gehrig’s disease, is a cruel illness that causes the motor neurons inside your spinal cord to die,” the Washington Post editorial said. “Over time, your muscles degenerate and you become a prisoner in your own body — progressively losing the ability to move, speak, swallow and, eventually, breathe. There is no cure. No one has ever gotten better after a diagnosis of ALS.
“No one, that is, except Ted.”
Harada's outcome was not typical of other patients with ALS because in March 2011 he received an injection of 500,000 stem cells from a woman's donated fetal spinal-cord tissue.
The treatment had not been FDA approved when Harada received his first injection but his symptoms dramatically improved and soon resumed a normal life.
“And live he did,” the Washington Post editorial said. “He used the time he had been given to the fullest — not only to enjoy his beautiful wife, Michelle, and their children, but also to fight for others facing terminal illnesses. Ted became a champion of the Right to Try movement — a campaign led by the Goldwater Institute to pass laws in state legislatures across the country to allow patients with terminal illnesses such as Ted to get access to investigational drugs and treatments that completed basic safety testing and are showing great promise in clinical trials but are still not approved by the Food and Drug Administration.”
Right to Try legislation that unanimously passed the North Carolina state House last week and now is in the Senate would allow terminally ill patients in the state to access stem cell treatments not yet approved by the FDA.
Similar “right to try” laws already are in place in 41 states, including Harada's home state of Georgia.
Harada died Oct. 17, 2016 after being diagnosed with a brain tumor but that should not detract from the life restored to him by "right to try" treatments, the Washington Post editorial said.
“We will never know how long Ted’s ALS symptoms would have remained in remission, but we know this much for certain: Ted did not die from ALS,” the editorial said.
