The UC-Davis Ethics Conference, Part 7: The Mystery Man Revealed!

At the end of Part Six, we were finally about to learn the identity of the mystery man who’d spoken up at Tim Caulfield’s lecture the night before… and in Part Seven, we finally do…
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The man adjusted the microphone and began speaking into it.

“I’m Ted Harata, and I’m a patient advocate,” he said. “I was Patient Eleven in the Neuralstem ALS trial.”

I think I’d known deep down all along who this man was. I knew that there would be patients’ representatives and advocates here; I’d even seen his name on the program. But somehow, I hadn’t connected the name with him. I think the reason was that it seemed impossible for this manic bundle of energy to ever been an ALS patient. ALS meant a rapid physical decline and then dying within two years, or at best ending up a crumpled heap in a wheelchair, like Stephen Hawking. There could be no third option. There had literally never been a documented case of ALS going into full remission. Real remissions just didn’t happen in ALS. People only went from bad to worse to the bitter end, which usually came quickly.

Until now. Maybe.

I listened, trying to grab and hold onto every word that he said.

Ted had first noticed problems in 2010, when he’d had more physical problems after starting to try to get into shape. This might happen to anybody. But when he couldn’t keep up with throwing a ball to his kids in the pool, he knew that something was very wrong. Diagnosing ALS is an agonizing process of elimination; I understood that process all too well, you got to the point where you would rather accept any kind of horrible news than continue to go through the frustration and suspense and lack of answers. His doctor had told him about the Emory stem cell trial that was being run by Neuralstem, and he fit the requirements.

The trial had gone through two parts out of the three generally needed for FDA approval, and he had been in both. Phase 1 had involved 18 patients; Phase II, 20 patients. The drug was put into the gray matter of spinal cord—another moment when I was glad there wasn’t a slide—and he then spent a week in the Emory hospital. The second time, the procedure had been done on his neck, and there was apparently a third surgery for comparison of some kind, although I wasn’t exactly sure what that had meant.

The improvement, for him, had begun in three weeks. He maintained those gains for over 10 weeks, and the deterioration of the disease had officially slowed.

“I was using a cane, right?” he said, looking around the room as if daring anyone to challenge him. “I couldn’t go up a flight of stairs. And you can see me now.”

We could indeed.

He was telling the truth. He had to know how easy it would be to check out lies or exaggerations; his original condition had been thoroughly documented in the study. And I could see for myself how energetic he was now. He looked ready to run a marathon, with plenty of energy left to bounce off every wall in the building.

Ted had a lot of specific ideas about what needed to be done—and what wasn’t being done. “Everyone involved needs to focus their research,” he said. “We’ve got to work on finding the actual cause of ALS, including genetic testing. We need a world governments’ ban on the patenting of anything developed through government funding.”

I definitely got the feeling that he wasn’t the biggest fan of the FDA and their drug approval process.

“Phase 1-4 trials need to be concurrent,” he said. “Extended access needs to be expanded, and we need to have people doing phase 1 and 2 at the same time. The FDA and companies need to cooperate now.” He paused. “I see the FDA as a hindrance.”

While I could see why he thought that way, I also thought that the judgement really didn’t seem fair. The FDA hadn’t been the ones who had decided to ban stem cell funding four separate times in the past forty-one years. No regulatory body had done that on their own.

He was a strong advocate of Right to Try, which I had mixed feelings about, but it wasn’t too hard to see where he was coming from on that front either.

“Patients desire something to try,” he said aggressively, and again, there was no argument from me on that point. “But how are they supposed to get access? Especially people who don’t qualify for trials. Doctors are trying the best they can to provide care, but drugs that could save people are not being made available. Look up GM604 if you want to see what I mean. They have a Facebook site; they’re all over the internet.”

“You can’t put this thing back in the bag,” he said. “The status quo is not acceptable. And people are doing it anyway. If you want to stop patients from going to illegal stem cell clinics, then support other options.” He paused and looked around the room. “We need to take a leap of faith for patients and for cures.”

A chill tingled down my spine. He’d actually used the words. Leap of faith. The very words that had kept echoing through my head on the desperate night before the miracle happened three and a half years before. Well, the almost-miracle. My condition had responded to treatment when nobody thought it would, but a real cure for me, as for so many other millions of people, would come only from stem cells.

I led the applause, knowing that whether his words had been coincidence or something more, I would never forget them.

Maybe in Ted Harata, I was seeing the future of medicine.
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Coming soon in Part Eight: Ted wasn’t the only patient advocate that day, as I learn over a turkey sandwich. ..

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Cathy Danielson
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Cathy Danielson

In 2011, my life was shattered when I was diagnosed with a mysterious, incurable disease that always ends in blindness. The only hope on the horizon was a drug that broke all barriers in early testing. This drug, which replaces damaged cells in the eye, comes from the new class of stem cell based treatments that could cure the incurable, providing hope for patients with cancer, heart failure, ALS, cerebral palsy, and many more fatal and disabling diseases.

I survived the disease, and I now have the only remission on record. But a remission is not a cure. The stem cell drug I need for a real cure is now rapidly moving towards approval in the rest of the world, but in the USA, it—and all other cellular therapies-- are still stuck behind prejudice, ignorance, and lack of funding. Hundreds of millions of desperate patients with incurable diseases need these drugs.

That’s why I’ve gone on to fight for greater public education on stem cell drugs, knowing that our laws must be changed so that all of us can get access to the best treatments instead of our health and our lives being held hostage by special interests.

I’m now a patient advocate whose work on stem cells and patients’ rights has been published in outlets such as the Oregonian. I am a manager at popular science and financial blog www.stemcellinvestor.com and a frequent speaker at many venues across the spectrum, including churches, scientific conferences, and atheist groups, and everything in between. I’m also an advocate for Right to Try laws that would allow access to experimental medication for terminal patients at the state level. Read the entire story in my upcoming book, And the Blind Shall See: A Skeptic Patient Surprised by Faith, Science, Family, and Miracle Cures.
Cathy Danielson
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