In recent days, we have stopped to remember those who left us in 2016 whose lives profoundly changed the world around them — people such as John Glenn, Nancy Reagan, Muhammad Ali and Elie Wiesel.
Allow me to add a name to that distinguished list that you probably never heard before: Ted Harada. Because Ted did something that no one else in recorded medical history ever did: He beat ALS.
Amyotrophic lateral sclerosis, or Lou Gehrig’s disease, is a cruel illness that causes the motor neurons inside your spinal cord to die. 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.
When Ted was diagnosed in 2010 by Jonathan Glass, a doctor at the Emory ALS Center, he was deteriorating quickly. He could walk only short distances with the help of a cane. Simple tasks, such as getting the mail or walking up the stairs to put his kids to bed, had become impossible for him.
But two years later, on Oct. 20, 2012, Ted completed Atlanta’s two-and-a-half-mile Walk to Defeat ALS with no difficulty. In fact, Ted completed the ALS walk four years in a row. He ditched his cane and was able once again to play with his kids in the pool and walk up the stairs to tuck them in for bed.
What saved Ted was an experimental ALS treatment pioneered by doctors at the Emory ALS Center, in which doctors opened his spinal cord and injected neural stem cells directly into diseased areas, where the pools of motor neurons affected by ALS are found. The hope was that the surgically implanted cells would fix or replace the damaged ones and that this would slow or stop the degeneration of the motor neurons.
Before surgery, Ted was told the treatment would not help him. He was part of a Phase I safety trial, whose sole purpose was to prove the procedure would not kill him. But to his doctors’ surprise, not only did the procedure not kill him, it also reversed his ALS symptoms.
The results were so shocking, so unprecedented, that Glass actually went back to reconfirm that Ted even had ALS. He did. Ted recalled for me the moment when Glass sat him down and said: “You’re the first ALS patient I ever told this to, but right now you are not dying from ALS; you are living with it.”
And live he did. 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.
I got to know Ted while working with Goldwater president Darcy Olsen on a book about the Right to Try, and we remained close. He explained to me why he was fighting for the Right to Try. “I am one of just 32 Americans who have been allowed to try this experimental therapy,” he said. “But since my clinical trial began, 24,000 people in the United States have died from ALS. So why should only 32 Americans with ALS have a chance to try to save their lives while all the others are doomed to die? And what about the millions of Americans with other terminal illnesses?”
Good questions. Millions of Americans are dying of terminal illnesses, while treatments for many of those illnesses exist and are being safely used in clinical trials. 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.
In 2014, Ted wrote an op-ed for the Atlanta Journal-Constitution sharing his story and making the case for the Georgia General Assembly to pass legislation giving terminal patients like him the right to try to save their lives. His piece caught the eye of state Rep. Mike Dudgeon, who contacted Ted and offered to sponsor a bill. For two years, they lobbied state legislators relentlessly, and in May 2016 those efforts paid off when Gov. Nathan Deal signed the Georgia Right to Try Act into law — making Georgia the 28th state to enact Right to Try legislation.
But Ted’s victory came in the shadow of tragic news. A few months before the bill was signed, he was diagnosed with brain cancer. This time there would be no miracle cure. He passed away on Oct. 17, 2016.
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.
“I don’t know why I was picked or why I was chosen,” he once told me, “but if I’ve been given this gift, how selfish [would it be] to keep that gift to myself and not do something good with it?”
Ted Harada did something good with his gift. He made medical history and brought hope to others who have been diagnosed with a terminal illness.
Rest in peace, my friend.