It’s that time again! Time for the next installment of Howard’s Divine Comedy, wherein Howard continues his journey toward death with his hero companion.
Howard: Hey Jerry, you and the Grateful Dead weren’t very active in the anti-Vietnam War movement, were you?
Jerry Garcia: Well, that depends on how you look at it, man.
H: How do you mean?
J: Ok, so, we were certainly around that activity, you know, had lots of friends in the Bay Area who were very serious activists, we played at a demonstration at Columbia University in May 1968, but we kinda came at it differently. We were very serious too, but about music and cultivating a peaceful scene rather than about marching. [sings] Woah-oh, what I want to know is are you kind?* Ya dig?
(*–Robert Hunter, from Uncle John’s Band)
H: Right on!
J: Yeah, I mean, Abbie Hoffman and Jerry Rubin and SDS had the protesting thing pretty well covered, so we kinda added by subtraction, you know? By gathering together to celebrate peace, love, music and psychedelia, man!
H: Totally! There’s that great tape of your amazing 2-24-1974 show at Winterland Arena, and Bill Graham introduces the band saying…
H & J in unison: “Whatever’s going on in the rest of the world, whether its wars, or kidnappings, or crimes, this is a peaceful Sunday night with the Grateful Dead!”
Ever since I was diagnosed, in July 2018, with Amyotrophic Lateral Sclerosis, aka ALS, aka Lou Gehrig’s Disease, aka Motor Neuron Disease, aka MND, aka Charcot’s Disease — (SIDE NOTE: You know you’re in trouble when the medical condition you’ve contracted has more aliases than a mobster on the FBI’s Most Wanted list.) — well, besides eventually learning to spell amyotrophic without having to look it up, and, as if dying slowly and painfully and relatively young wasn’t difficult enough, it turns out I’d also been conscripted to fight in a war.
No, really, this is how we actually talk about illness. It’s a violent struggle against a menacing enemy. We battle everything from the common cold to cancer to covid-19. As metaphors go, if it was merely a matter of keeping our spirits up, a kind of pep talk to our immune systems and to the family and friends who would be sad if the illness won, perhaps it’d be ok.
For instance, I wrote in my memoir, I, Too, Heard The Owl, specifically in Chapter 15, how, shortly after I was diagnosed, I saw a naturopathic doctor who told me he’d had three ALS patients in the past, they’d all sadly passed, but of the three, two of them quickly succumbed to hopelessness and despair and their disease progressed rapidly. The third, however, was determined to fight, he spent the majority of his time researching potential alternative treatments and clinical trials, he traveled to a clinic in Thailand and had a stem cell treatment only available there, he developed his own protocol of dietary supplements, he was driven to stay positive, and he lived two years longer than the other two.
I went on to half-jokingly describe how my choice to fight or not to fight ALS was complicated slightly by the fact that I’ve been a lifelong pacifist, only to then conclude that I indeed had a very good reason for figuratively going to war: to win as much quality time with my wife and son as possible before I died.
And so, as I explained in Chapter 24 of my memoir, after learning that the only two ALS treatments approved by the U.S. Food & Drug Administration offer no more than three additional months of life expectancy, after hours and hours of research, after consulting my cousin who has a PhD in biochemistry and works for the FDA, I volunteered to participate in a Phase 3 clinical trial for a promising stem cell treatment: NurOwn.
It was a double-blind, placebo-controlled study: bone marrow is extracted from the patient’s hip, stem cells are cultivated from the marrow in a lab via a proprietary process, there were to be 200 participants, 100 would get three infusions of stems cells, eight weeks apart, and the other 100 would get the placebo.
It was a 50-50 chance, I’d have to travel 1,200 miles to and from Los Angeles, California 14 times over the course of 12 months, I’d have to pay for all of my own travel expenses, endure the rigors of the frequent trips, navigate all of the logistics, all for a 50-50 chance, and it was absolutely the only option that showed any promise whatsoever.
Sadly, as I subsequently wrote in Chapter 38, and as luck would have it, I ultimately deduced that I’d been randomly placed in the placebo group.
Every Single Conversation, After I’ve Told My Clinical Trial Story, Goes Like This
Me: Yeah, so, the trial just ended in October 2020, and now it’s up to the FDA to approve the treatment, or not; if approved, the company that developed the treatment needs to scale-up to be able to deliver it widely to patients; insurance companies need to decide how much of the cost, estimated at $300,000.00 per treatment, they will cover; and given the rate of progression of my ALS, it doesn’t look likely that I’ll be around long enough.
Family/Friends: WTF?! You mean that after you invested all that time, energy, and thousands of your own dollars out of pocket for travel expenses to help get a treatment to market that will earn the company that developed it millions of dollars in profits you still won’t be given access to the treatment, not even via the U.S. federal Right To Try Act?
Me: That’s correct.
Family/Friends: That is seriously fucked up!
Welcome to the moral abomination that is for-profit healthcare.
Fighting The Medical Industrial Complex
Like I said, I was conscripted, but as it turned out, not just into a war against an illness.
Besides having to fight an evil, disembodied, microscopic, and still not fully understood foe like ALS, we are also up against a systemic capitalist system wherein healthcare is considered a commodity to be bought and sold, rather than an inalienable human right. Even in countries that offer free socialized healthcare to their citizens, people still die everyday from diseases that might be cured by now if treatment research and development wasn’t partly conducted by pharmaceutical and biotech companies that legally tie up their work as intellectual property and only move projects forward that show profit potential.
Additionally, here in the U.S., we have a massive for-profit health insurance industry, consisting of companies that employ people called Actuaries, who analyze health data and statistics, assess risks the companies may face, and calculate how much people should pay to protect their lives.
It’s a war, alright.
Truth is, I’ve been trying to write about this for a long time, since long before I was diagnosed with ALS. And yet, every time I try to tackle the topic I become completely overwhelmed with anger, and that anger leads quickly to hopelessness, then resignation.
Now, with just a few months left to live, this is basically my last chance to speak out about it.
So, rather than an exhaustive journalistic exploration, armed to the teeth with citations for my sources, and aimed at educating and persuading — for which I have neither the stamina nor the expertise — the following is simply a collection of bits and pieces that, taken in together, paint a fairly stark and undeniable picture.
What’s Insurance For?
Click on the blue Twitter bird logo to read Elizabeth’s whole thread, just one example of an all-too-common experience.
Isn’t A Government Supposed To Take Care Of Its Citizens?
ALS is called Motor Neurone Disease (MND) in the United Kingdom.
Note the NASDAQ info included in the headline of this article.
The thought of people reading through medical journals looking to make money on the stock market sickens and angers me.
Back to NurOwn, briefly:
Here we have a tweet from Brainstorm, the company that developed the NurOwn stem cell treatment, with a link to an announcement that seems at first to be encouraging news: a partnership has been formed with another company, Catalent, for the buildout of NurOwn production facilities.
However, as with Ionis Pharmaceuticals above, included in the announcement is the NASDAQ info for Brainstorm and Catalent, as well as this Safe Harbor Statement, the language of which drives home the fact that getting NurOwn to the people who need it — while someone currently dies of ALS/MND every 90 minutes — is dependent on these companies making profit:
Statements in this announcement other than historical data and information, including statements regarding future clinical trial enrollment and data, constitute “forward-looking statements” and involve risks and uncertainties that could cause BrainStorm Cell Therapeutics Inc.’s actual results to differ materially from those stated or implied by such forward-looking statements. Terms and phrases such as “may”, “should”, “would”, “could”, “will”, “expect”, “likely”, “believe”, “plan”, “estimate”, “predict”, “potential”, and similar terms and phrases are intended to identify these forward-looking statements. The potential risks and uncertainties include, without limitation, BrainStorm’s need to raise additional capital, BrainStorm’s ability to continue as a going concern, regulatory approval of BrainStorm’s NurOwn® treatment candidate, the success of BrainStorm’s product development programs and research, regulatory and personnel issues, development of a global market for our services, the ability to secure and maintain research institutions to conduct our clinical trials, the ability to generate significant revenue, the ability of BrainStorm’s NurOwn® treatment candidate to achieve broad acceptance as a treatment option for ALS or other neurodegenerative diseases, BrainStorm’s ability to manufacture and commercialize the NurOwn® treatment candidate, obtaining patents that provide meaningful protection, competition and market developments, BrainStorm’s ability to protect our intellectual property from infringement by third parties, heath reform legislation, demand for our services, currency exchange rates and product liability claims and litigation,; and other factors detailed in BrainStorm’s annual report on Form 10-K and quarterly reports on Form 10-Q available at http://www.sec.gov. These factors should be considered carefully, and readers should not place undue reliance on BrainStorm’s forward-looking statements. The forward-looking statements contained in this press release are based on the beliefs, expectations and opinions of management as of the date of this press release. We do not assume any obligation to update forward-looking statements to reflect actual results or assumptions if circumstances or management’s beliefs, expectations or opinions should change, unless otherwise required by law. Although we believe that the expectations reflected in the forward-looking statements are reasonable, we cannot guarantee future results, levels of activity, performance or achievements.
Glaciers Are Moving Faster These Days
This research news would have been exciting for me, if not for:
- Two months ago I was told I have six months left to live.
- The time it will take to develop this cell therapy, from mouse models where it’s at, through human trials, approval, and finally out to patients far, far exceeds that.
False Hope Is Brutal
When news of AMX0035 circulated a few weeks ago, I heard from many friends/family asking about it with measured excitement.
It was described in news articles, using glowing terms, as being very promising.
Sorry, but by what standard is “survival benefit of several months” anywhere near promising?
AMX0035 Safe, Effective in Slowing ALS Functional Decline, Trial Data Shows
“This development is a breakthrough for the ALS community…” said Josh Cohen, co-founder, co-CEO, and chairman of Amylyx.
So, what could possibly motivate the ALS Association, ALSNewsToday, other outlets, and AmylyxPharma, the company developing AMX0035, to justify the characterization of this ALS “treatment” as a “breakthrough”?
How dare they so grossly stir up false hope for ALS patients and their families?
Shame on them.
So, that’s it.
I’m throwing in the towel, laying down my weapons, deserting, going AWOL. I’m no longer willing and/or able to fight this war. I’ve got more to share here on the blog, as I complete the remainder of this journey, this divine comedy, but I’d prefer to do so as peacefully as possible.
I’ve stated my piece, but, should you be moved to take up the battle flag, I’d be honored, dear reader, if you’d do so by:
- Reading up more on the issues if you feel you need to understand them better.
- Helping spread the word far and wide, perhaps starting with sharing this post out on those social media thingies.