Here it is, and you don’t want to miss this one! The ending just might be my favorite bit so far.
In the brief break between speakers, I quickly looked over my notes about ALS. 8 out of 100,000 people were affected. There were many different phenotypes, some sporadic; some genetic; some caused by God only knew what. Even when ALS was familial, the specific genes involved were very difficult to pin down. Abnormal ones could occasionally be successfully targeted with success, but that was rare. There had been 160 treatment trials in the past 5 years, and out of those, only one effective drug had emerged, which was Riluzole.. And “effective” was a relative word in that case, to say the least.
As Wikipedia notes, “It delays the onset of ventilator-dependence ortracheostomy in selected patients and may increase survival by approximately two to three months.”
Now, the value of an extra two or three months of life shouldn’t be underestimated, because a lot of living can be packed into that time. But really– “may” increase? “Delays the onset in selected patients?” And this was best that modern medicine could do? In 2013, 63 companies had trials for ALS medications, but was there really any indication that any of them would get a better result?
And then, sitting a couple of yards from me, there was Patient Eleven in the Neuralstem trials. Ted Harada, who’d been bouncing around the room for the past two days.
There was that drug GM604, though, the one he’d recommended researching. I made a mental note to look it up over break.
Another patient spoke next, the last speaker before lunch. I recognized him instantly as the man I’d seen before, the one who’d been leaning against the pillar. He was a real contrast to Ted, a white-haired man in late middle age, perhaps sixty-five years old. He was tall and fit, as if he’d been engaged in physical activity for his entire lifetime and the results had stuck, but he moved slowly and leaned on the podium when he spoke. I looked at the program.
Michael Sowards, ALS patient.
He had complex ALS, one of the many subtypes. Nobody knew what had caused it. He’d apparently started on statins after a heart attack, and he felt that they contributed to getting ALS. I thought that theory was just about as likely as any other, since nobody knows exactly what causes the disease.
He’d searched for treatment everywhere he could think of, but he hadn’t qualified for any clinical trials. He gave Ted Harada a wistful look after saying that. He’d then gone on to do constant research on the net, hours and hours, every single day. I winced in sympathy there. I knew what it was like to spend entire days tracing snipe hunts and red herrings on Google, chasing down clue after clue to treatment that led nowhere.
He’d been a firefighter during his entire working life, and he talked about how firefighters use a coordinated system to do their lifesaving work. “We need the same thing for stem cell research,” he said. “That needs to start happening. Right now, it’s too slow, and people aren’t working with each other and sharing their discoveries.”
I couldn’t disagree with that.
I wasn’t sure of exactly what to think about the Neuralstem trials. Of the fifteen patients who had been treated, seven had responded. This meant that they’d stayed at baseline rather than getting worse. The remaining eight, on the other hand, had continued to go downhill. The responders hadn’t had wildly impressive medical results—or at least, when the results were all averaged together. But I knew how deceptive averages could be. 100 and 0 may average out to 50, but try telling that to people on either end of the spectrum. Ted Harada was sitting about three chairs away from me, if I needed a living reminder of that fact. I remembered a rather snarky article outlining some very recent questionsabout how effective the drug under study was, and I pulled it up on my phone.
“Responders benefited more than non-responders. Thanks, Neuralstem, but this analysis is not very helpful because the company can’t identify patients who will respond to NSI-566 before they undergo the extensive surgical surgery required to transplant the stem cells into the spine.”
I wasn’t sure of exactly what the author thought he was trying to say here. There was clearly a huge gap between patients who responded and patients who didn’t, and nobody knew how to pre- identify the people who fit into that first category. But this seemed to be because ALS was such a heterogeneous disease, with many causes and many factors. There was no way to predict exactly who would have the combination of traits that would enable them to benefit from this particular therapy; not yet, anyway. Still, some patients undoubtedly had benefited from the treatment in those ALS trials. What was the alternative—to do nothing and to help nobody?
I closed the browser and put down the phone, still thinking. Neuralstem’s results were more promising than they were being painted by articles like that one, and they more than justified continued studies. But they could not be compared to Ocata’s. Half of the patients in the ALS trial had stopped most of the progression in their original disease; 100% of the patients had stopped 100% of that progression in the RPE trial. In addition, half of the people in the Ocata trial had seen major improvements. There was no comparison at all. I had yet to see any other stem cell study that really could live up to that standard. I was struck by this thought, and it was far from the first time.
Then, of course, there was the fact that AMD was vastly more common than ALS. Eight people of 100,000 couldn’t begin to compare with 180 million out of seven billion. As terrible as ALS is, it’s also incredibly rare compared to AMD—or, for that matter, a lot of the other conditions that stem cell therapies could treat, from COPD to different types of cancer to autoimmune disorders.
We all took a break for lunch. I looked through the boxes of turkey and cheese sandwiches with sides of potato chips and bananas and picked one from the side table. Lunch wasn’t very inspired but it was free. There wasn’t really much of anywhere to go to eat, either, so I picked a seat in the waiting room of the emergency unit of the hospital and started opening the box.
“Is this seat open?” asked a calm voice. I looked up to see Michael Sowards.
“It’s waiting for you,” I said. I was burning with curiosity about him, and I wanted to know more than he’d said.
He talked about his family, his children and grandchildren, growing up in Sacramento, giving a thumbnail sketch of his life.
“I remember we used to go into a burning building without any kind of lung protection,” he said. “Who knows what kind of effect that had?”
I nodded. I certainly didn’t know. “Nobody really knows what causes ALS. But I would never take statins; there’ve been studies for thirty years about negative effects.”
“Wish I’d known that before I started taking them,” he sighed.
I knew that feeling, all right. The realization that if you’d only known the right thing to do, if you’d understood the wrong thing to avoid, then you could have averted disaster. Learning the right and wrong choices when it was too late to correct them was truly insult piled on top of injury. I couldn’t help wondering if it might be better to never find out what you could have done. If Stacy hadn’t decided to pass an eighteen-wheeler on a January night when I was eighteen years old, then the juggernaut of devastation that followed never would have been set in motion. I never would have had that first set of conditions that would forever haunt me, the orthopedic and neural injuries that had no current cure anyone could foresee. But then, I never would have been driven to learn about regenerative medicine and stem cells, either.
“I’m still looking,” he said with a sad smile. “Every day, I’m searching for answers. I’ll never give up.”
Michael Sowards’ fight against ALS took more courage than all the firefighting he had ever done. In an immediate life or death situation, trauma blasting from all sides, there was no time to really think. I knew all too well that over time, there even came to be something comforting about that fact. You simply acted without thinking, or at least it wasn’t the kind of thinking where your cerebral cortex pushed its way to the front. The day-to-day grind of survival was so much harder.
“Well—that’s about it for me.” He got up with a wince. “I’m used to lying in my recliner when I want, and I think I need to go home.”
I watched him as he got up and walked away, wondering how much determination and strength it took for him to walk without a cane, without a limp, without showing his inner struggle to the outside world.
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.
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