Hello and welcome back to the Cripple Command Center podcast. My name is Eric Valor and I will be your host for this episode. The Cripple Command Center, or C-to-the-3 (C^3), is where I live, also called The Blue Room. It’s where I make and produce this podcast. It has been a while since I published a podcast. I have had some personal and health issues including one that landed me in the hospital. Afterward I was quite exhausted and needed time to rest and recover. Turns out staying in the hospital is not good for you.
So, now to the news. First, I am pleased to announce that I have self-published a book of my own poetry titled “Hamachi Eyes”,written over the past few decades. It’s on my website under the About Me tab. I also have a bunch of my original food recipes under the same tab so have a look if you’re into the culinary arts. Ironic that I really got into cooking after I could no longer eat. Anyway, the book is about 89 pages of a journey through my interpretations of various experiences.
I think the first poem I ever wrote was when I was around 9 or 10 and I remember it being well received. That’s when I first felt I had a little talent in writing. Unfortunately I don’t have a copy so it’s not included in the book. You can freely download a copy in either PDF, Amazon Kindle, or generic e-book reader format. I hope you download a copy and enjoy it. Since publication I have had selections published in the New England Review of Books. You can also listen to an audio version of the interview I did in support or read it on the NEROB website.
Next, many of you have heard that Brainstorm will not be releasing its proposed therapy for ALS under the recently enacted Right To Try law also called RTT. I have been against RTT since it was first proposed because I knew that it would be ineffective in anything except reducing the ability of the Food and Drug Administration to properly oversee the safety of the drugs produced for sale by pharmaceutical companies. In fact, RTT is no different from the long-existing Expanded Access Program that the FDA created at the turn of the 1990s in response to the HIV/AIDS crisis.
The only difference between RTT and EAP is that the FDA now has a little less authority to halt experimental drugs and therapies that show issues in patients who obtain them outside of official clinical trials. Pharmaceutical companies have no compulsion to provide their products outside of trial and if they do, the patients obtaining them will be subject to large personal cost. And, according to the history of drugs and therapies in trial for life-threatening diseases for which no truly effective treatment options exist, the treatment probably won’t be effective.
What has happened is that patients, specifically Person(s) with ALS or PALS, have been used by the GOP to advance its decades-long deregulation agenda. I warned of this when it was being presented by PALS and we are seeing now that RTT won’t be effective. The Brainstorm product, Nurown, was the original target of RTT and it will not be provided.
Last, a bit of advice. If you tell a PALS that you love him or her, you better damn well mean it. We already have enough trauma to deal with than to have a mate vacillate and/or suddenly vanish. Nothing can deal a worse blow to the already fragile grasp on hope most PALS have. If you don’t mean it or aren’t fully committed then stay silent. False hope is worse than no hope.
Thanks for tuning in to the C-to-the-3 (C^3) podcast on ericvalor.org. Sorry it was such a short one. I am and ever will be Eric N. Valor, and until next time, breathe easy.