I am re-releasing an older video I did with a new somewhat tighter look and some upgraded language (words I never liked when I originally released it). Essentially, nothing has changed in 6 years since 2011 to 2017. Radicava was approved for use in the USA, but it only works in very recently diagnosed patients and only for about a year. I classify it with Rilutek as a medication with a rather modest effectiveness. No truly effective and approved treatment exists yet for ALS.
And PALS are still being forced to make the terrifying and grisly choice between bankrupting their families merely for the privilege of living or just accepting a rapidly accelerated death where one morning their children or spouses would find them cold, pale, and never to wake again. Everything is covered by Medicare except the people required for being close by for the inevitable situation of something happening with the ventilator – normal moisture or mucus buildup, the air hose popping off, or something drastic going wrong with the machine – any of which mean death in minutes. Immediate family CANNOT be caregivers because the stress is just too great already. The health consequences would splinter a family at a time when being close together is the most important.
It is despicable that even when new treatment options which promise significant extension of life for PALS that they may be unable to enjoy that gift with their families.
Hello and welcome back to the ericvalor.org Blogcast Podcast.
My name is Eric Valor and I will be your host for this episode. Please make yourselves comfortable and feel free to order something from the bar.
As my longtime readers know, this is not a political blogcast. The scope of this blogcast is limited to the subject of ALS, living with the disease, research into treatments for ALS, experiences of Person(s) with ALS (PALS), and my personal reflections. I routinely deny requests to “guest blog” general health subjects (also because they are just attempts to spread spam links). But I have to address a subject which affects 17% of our entire economy and the daily lives of 99% of our citizens, and has devastating implications for PALS and others similarly affected by severe conditions. That subject is the long-awaited Republican response to the Patient Affordable Healthcare Act, also known as the Affordable Care Act or more colloquially Obamacare.
On Thursday, June 23rd, 2017, the Republican Senate Majority Leader released a “discussion draft” of their supposedly “better” healthcare plan which was promised to lower medical costs and improve medical care for American citizens, and “rescue” us all from the “disaster” of Obamacare. Just like the ridiculous House bill (which Paul Ryan apparently hurriedly cobbled together over a long weekend), the Senate Better Care Reconciliation Act snatches access to healthcare from, and makes it much more expensive for, tens of millions of Americans. We waited 7 years for this? I call it the anti-healthcare bill.
Republicans incessantly whined for 7 years about how terrible Obamacare was, how they had “a much better plan”, how the ACA was “passed in secret with no hearings, input from Republicans or the public, and was written behind closed doors. Actually it was available online for a year for public comment, had over 100 hearings, and included over 100 Republican amendments. After all that time this embarrassment on paper is the best they can come up with? This naked frontal assault on the poor and middle-class WILL LITERALLY KILL ME and others with ALS and other deadly conditions – all to give around $1 TRILLION to the already-hyper-wealthy. Moreover, it was literally written in complete secrecy behind closed doors (in such secrecy that one of the supposed authors of the bill never saw it until today) and will have no hearings with less than 10 hours of debate and amendments before a vote is called about a week from now. Undoubtedly Senator Tortoise McGee wants to rush this vote before senators go on recess and get an earful from constituents.
Obamacare is NOT “failing” (as Republicans ludicrously tried to proclaim even before ACA went into effect). The reality of the situation is that tens of millions more Americans have access to affordable healthcare. Medical bills are the number 1 cause of bankruptcy in America. And that comes from a lack of insurance.
The ACA is only “failing” in those states which intentionally refused to cooperate with the Medicaid expansion where the federal government paid 100% of the costs for 3 years and thereafter covered 90%. These same states also refused to set up state exchanges, forcing residents onto the federal one. No wonder they have problems – and all just so Republican governors and legislatures wanted to score political points at the expense of their citizens. People may try to say this is just partisan finger-pointing but unfortunately for their view it’s also true. In the states which cooperated and implemented the provisions of the ACA it’s working out wonderfully.
The ACA in its final form was not designed to lower medical costs because that was negotiated out of the bill by Republicans and Pharma lobbyists. But it did, in fact, reduce the rate at which America’s healthcare expenditures increased, and it created significant affordable relief for tens of millions who would otherwise continue without care until forced to show up in the ER with a catastrophic condition. An ounce of prevention is worth a pound of cure.
“First, the BCRA will cut hundreds of billions of dollars of Federal funding from the Medicaid program by instituting per capita caps and optional block grants. Medicaid is a critical lifeline to millions of individuals with rare diseases across the United States. … State programs for Medicaid home and community-based services (HCBS) waivers (1915 waivers) may also be jeopardized due to financial constraints.
Second, the BCRA … would phase out Medicaid expansion starting in 2020 and concluding in 2024, likely leaving many individuals with rare diseases without health insurance.
Third, the BCRA does not adhere to several of our principles relating to prohibiting discrimination against individuals with pre-existing conditions. … [The BCRA] would still bring back annual and lifetime limits and limitless out-of-pocket costs by allowing states to amend the Essential Health Benefits (EHB) through section 1332 waivers. These vital protections … would therefore be removed if a state opts out via a 1332 waiver.
Finally, the BCRA does nothing to incentivize healthy individuals to enter the individual market and help stabilize premiums by offsetting the cost of more expensive individuals.”
I would also like to quote Judith Stein, the Executive Director for the Center for Medicare Advocacy (CMA):
“Never in 40 years of Medicare & Health care advocacy have I witnessed the kind of secrecy, and determination to take away health coverage we are witnessing today. A health care bill would strengthen coverage and delivery programs. This bill gratuitously weakens Medicare, decimates Medicaid, and guts insurance for over 20 million people.”
According to CMA, the BCRA includes:
The end of Medicaid expansion: Millions will lose coverage.
Medicaid per capita caps: Cuts would actually deepen over time.
Repeal of Medicare tax increase: Undermines Medicare’s finances.
This is a statement I added to a change.org petition calling for a “Medicare for All” program:
“I am currently living only because of Medicare and Medicaid. I have Lou Gehrig’s Disease, and used to be a top-10% wage earner. The disease forced me into bankruptcy slightly before I was even middle-aged. The United States is the wealthiest country in global history, and we have much more than enough taxation right now to pay for guaranteed healthcare. Medicare functions at a much higher efficiency than any other private for-profit insurance, because it doesn’t have a powerful incentive to maximize profit by denying me the services I paid for. Even with “Medicare for all” as a basic level of healthcare, there is still plenty of market left-over for private insurance for things like elective procedures.
It’s time for our public tax dollars to be applied toward services for the public, not for the enrichment of some private corporation. The last year has seen a massive awakening in public attention toward healthcare. If you are not aware of this by now, it’s because you are not paying attention to the voices of your constituents. But we are, and are very much aware of your actions (or lack thereof).”
Please consider signing the petition. It’s not likely to be successful by itself but it will show Congress that there is significant resistance to the GOP plan and that the right move is to actually expand Medicare in order to ensure the right of healthcare for all citizens.
The BCRA is a hideous piece of legislation that severely jeopardizes the poor, the elderly, and the handicapped like me. It’s basically a tax cut for the hyper-wealthy that is paid for by the suffering and death, yes death, of people coping with ALS and other deadly conditions that were stricken through no fault of their own. It’s a serious threat to my life and the lives of many of my friends. That required me to make this political statement.
Thank you for watching and please vote carefully and diligently in 2018. It can change lives in a major way. In the meantime, please contact your senators immediately and urge them to vote “No” on the BCRA. Until next time, keep breathing easy.
Hello to my readers, and now listeners. Welcome to my new blog format where I will post the same text and web hyperlinks as always, but now there will be an audio podcast version on my Youtube channel in the new Podcast List. My electronic avatar, which I specifically created to look like me, will “read” the podcast and a link to it will precede the corresponding post. My channel also has various videos related to ALS and a few personal videos from my past. I will also have a lower-bitrate sound file available as a download link on each blog post. My hope is that this format will make my blog easier for people to enjoy. Everyone now can listen to my posts and then later check out the text version and follow the embedded links to learn more.
This post is to announce my latest interview with a new lifestyle magazine called “Folks”. It’s a publication by PillPack, a full-service pharmacy which separates medication into individual doses. This is pretty handy for people who regularly take medication and may have difficulty with prescription adherence, and institutions like nursing homes and hospitals. The publication was launched about 9 months ago and features people living with various medical conditions, refusing to be defined by that condition. I guess that would include me.
I had the good fortune to be contacted by Josh Andrew. He is one of the writers for Folks and he had heard my recent interview by Reply All, a podcast by Gimlet Media. Our interview was conducted over email. Unlike the podcast, I did not need to also send sound files. The link to the Folks article is in the text version of this blog post. Josh was kind enough to assist me with this podcast by answering a few questions about Folks and how they found me, and how the interview was done. The questions I asked were:
Please describe what Folks Magazine is and what it’s all about.
Please describe how you found me and why my story was interesting to Folks Magazine.
What was the interview by email like?
Have you ever done this before?
His answers are in the podcast.
Thanks for listening and/or viewing. Please leave a comment on this blog post and let me know what you think of the new format.
I am the world’s first fully-functional cyborg! Need proof? My part in this Reply All podcast starts at 16:35.
This interview took place over about 3 weeks including one live telephone call and approximately 40 questions over email to which I replied both with text and individual MP3 files of the audio of my computer speaking each answer. It was a rather interesting experience and one that would certainly come in handy for any future interviews. Sruthi Pinnamaneni and Rick Kwan did a great job of stitching all of the questions and answers together to make a single coherent interview.
My desire was to demonstrate that life goes on after diagnosis and that there is still PLENTY that someone can still do despite full paralysis and being dependent on a ventilator. Hopefully other more newly-diagnosed PALS listening to the podcast can take a little inspiration to keep living and contributing your individual wonderful gifts to the world. Together, our voices are amplified and we can create the change we want to happen in the world.
As many of you may know, Dr. Richard Bedlack has been investigating a very rare phenomenon known as “ALS Reversal” where the normally inevitably fatal disease can stop progressing and even where the patient recovers slightly or nearly fully. Over the past few months Dr. Bedlack has been interviewed for a podcast called “Reply All” (I know the timing because I was also being interviewed for supporting material). The podcast is worth a listen, and you can get read the transcript at the Reply All website.
This is more good exposure for ALS awareness. Thanks to Dr. Bedlack and to Reply All for a great story.
I just received an email today notifying me that I have been named a Quora Top Writer Of 2017! My contributions are tightly focused in the topic of Amyotrophic Lateral Sclerosis (which I created on Quora) with some attention in the broader topic of Neurodegenerative Diseases, along with a few answers in the topics Science, Physicists, and Stephen Hawking (to give a long-term patient’s perspective on some questions asked about the Professor, including one asking how he fathered children where my answer has 1.4 million views and over 20,000 up-votes – the Quora equivalent of a Like). I have to thank my friend Laura Copeland for introducing me to and getting me involved at Quora. Laura and I met in 2011 when she interviewed me for a story in my local newspaper. She and I remained friends ever since.
Quora is probably the best place to go for answers to questions about anything from science to global social issues and politics to personal hobby interest (maybe I should start a Surfing topic..?). It’s a highly erudite place, especially for a social media site and has astonishingly remained so for many years. Quora is a place where trolls are not tolerated and from which is almost totally free.
I am quite flattered to receive this distinction and am happy that my contributions have been deemed useful for the many people who have read my answers and those who have engaged in enlightening discussions after. It’s been a wonderful experience so far, where I have been able to definitely expand global public awareness of ALS/MND is a positive and engaging way. I am thankful for the opportunity and for the response. I look forward to many more years of engagement and enlightenment.
It was my first time ever doing this and it was exhilarating. For two hours, Jef and I were furiously typing away trying to keep up with the deluge of questions. In fact, I am still going back and answering late questions right now. At first I was a little nervous about facing a bunch of trolls and kooks, as the Internet appears full of these days. But the questions were all quality and reflected a desire to actually learn something about the subject.
I am grateful to Jef for writing the book, telling the story of patients driven to find their own solutions to untreatable diseases. And I am extremely grateful to Reddit for giving us this opportunity to share a taste of the experience with others who may have never previously heard of ALS before today. And thank you again, Jef, for inviting me to help her tell the story.
Watch These Straight-Talk Videos from ALS Finding a Cure
I’ve invited my friend Dr. Merit Cudkowicz at ALS Finding a Cure to share some important news about what they are doing to help ALS patients and their families learn all they can about the disease. Please read and share.
Every 90 minutes or so, someone new is diagnosed with ALS.
A new patient and his or her loved ones are overwhelmed by a whirlwind of emotions. They are shocked, confused and desperate for information.
So many questions … What exactly is happening to me? What’s next? How long will I live? Will I be able to drive? Or shower? Or go to the bathroom by myself? What happens when I can’t do these things anymore?
At this critical time, patients and caregivers need plain, simple, factual information from experts who care.
That’s why ALS Finding a Cure has created a series of videos to help ALS patients and their loved ones better understand the disease and the resources and support that will be needed as it progresses.
You get facts and insights from the people who know best — individuals living with ALS, their spouses, healthcare providers and professionals. Each of the eight videos brings an honest and straightforward perspective on the impact this disease has on the lives of those touched by it.
We have strived to cover the topics that a patient, caregiver or loved is most concerned or curious about:
Overview describes, in layman’s terms, exactly what ALS is and what it will do
Resources explains the information, equipment and support networks available to help manage the disease
Lean In encourages individuals to realistically prepare for, embrace and take ownership of ALS
Relationships provides guidance on maneuvering through the disease and the importance of a journey-long support system
And four other videos – Nutrition, Mobility, Hygiene and Breathing & Communication – offer straight talk and on each of those vitally important topics
The video series is an extension of the primary purpose of ALS Finding a Cure, which is to find and fill in the critical gaps in ALS science so that researchers can – one day soon, we hope — develop treatments for and a cure to this disease.
But we are also committed to empowering patients and their loved ones, right now, to be proactive about understanding and managing ALS. These videos are intended to be a resource so that patients and others can make informed decisions throughout their journey.
“Lean in” is more than just the topic of one of the videos; it is the overarching theme for this series. As Eric Valor’s inspiring life makes evident, being proactive is central to understanding, coping with and owning ALS.
We hope you will find these videos to be an effective resource for anyone impacted by ALS.
Dr. Merit Cudkowicz Chief of the Neurology Department at Mass General Chief Medical Officer, ALS Finding a Cure
Do NOT accept any Facebook friend requests from a “Rodney Frisard”. I did, and he immediately started a conversation asking if I had “heard the good news”. I said that I had “been there done that with the whole Jesus thing” (note to others: Please don’t evangelise to me as I really have already been there and done that and am not interested in religion outside of sociopolitical discussions). He responded by telling me some story about how the UN was giving “us” money to combat poverty, and he “noticed my name on the list” when he was supposedly signing his documents for $150,000. Obviously this is a total scam along the lines of a 419 or lottery email scam. When I said I would not be giving my social security or bank information, he deleted the conversation.
Do not give out any personal information to this or any other new “friend”. I don’t know if this is limited to Facebook, but remain vigilant. Beware.
“Conversation started Saturday Rodney Frisard: 10/1, 8:57pm hello,how are you doing?
Eric Valor: 10/1, 8:58pm all things considered, quite well.
Rodney Frisard: 10/1, 8:59pm glad to hear from you,hope you heard the good news?
Eric Valor: 10/1, 9:00pm not to be rude but been there done that with the jesus thing.
Rodney Frisard: 10/1, 9:01pm About the money grant offer?
Eric Valor: 10/1, 9:04pm how much to whom from who for what
Rodney Frisard: 10/1, 9:05pm the united nations are helping us with some grant money this days,they said the money is to help eradicate poverty and maintain a good standard of living, i got $150,000 from them and i also saw your name on their winning list when i was signing my document with them,hope they have contacted you as well?
Rodney Frisard: 10/1, 9:06pm ?
Eric Valor: 10/1, 9:10pm and a nigerian prince wants to share $40m with me…
Rodney Frisard: 10/1, 9:10pm who?
Eric Valor: 10/1, 9:12pm I have been around the internet since before it was the internet. I have seen all these scams before.
Rodney Frisard: 10/1, 9:14pm scam?
Eric Valor: 10/1, 9:18pm all you need is my social security and bank account information not gonna happen. anything more before I block you, report your profile, and make a very public blog post with international distribution?
**You cannot reply to this conversation.**
[at this point the person deleted the conversation and ran away]
On Thursday, September 22, 2016, Neuraltus Pharmaceuticals announced the commencement of their long-anticipated Phase 2B for their lead candidate NP001. NP001 is a molecule that reverts macrophages (white blood cells) from an activated state where they hunt down and destroy pathogens and injured tissue to a calmer state where they nurture and protect other cells. I have blogged about NP001 extensively in the past. This trial follows up their Phase 2A trial which completed a few years ago. Unfortunately many of the participants in that trial are no longer with us, including my friends Rob Tison and Ben Harris with whom I launched the concurrent Oral Sodium Chlorite Project.
I encourage all PALS to use the Clinical Trials tool on my website, provided by our friends at Antidote. It is very important that this trial is fully enrolled as soon as possible so that it is quickly completed and NP001 gets a shot at getting on the market. That is the best chance for it to get to ALL the PALS whose lives could be extended. We did it for the Phase 2A and can do it again for the Phase 2B.
This is a very exciting moment in the history of ALS.