Tag Archives: off-topic

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BCRA: The Anti-Healthcare Bill

Audio Podcast (192kbps MP3 download)
(video at bottom of text)

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.

Article on the BCRA from The Guardian

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.

All major medical organizations have released statements in complete opposition to BRCA. I would like to quote from the statement from NORD (National Organization for Rare Disorders):

“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.”

NORD Statement

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.

CMA Statement

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.

Change.org Petition Link

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.

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Quora Top Writer Of 2017!

WOW! – Quora Top Writer Of 2017!


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.

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Top 10 Quora Writer

Top 10 Most Viewed Writer On Quora


Wow! I just stumbled across my full Writer Rankings on Quora (http://www.quora.com). Based on number of views in the last 30 days, I am a “Top 10 Most Viewed Writer” in the following Categories:

  1. Stephen Hawking – #1 with 96,450, #2 has 4,764;
  2. Amyotrophic Lateral Sclerosis – #1 with 86,333, #2 has 194;
  3. Scientists – #2 with 83,523, #1 has 104,262;
  4. Physicists – #2 with 83,290, #1 has 359,824;
  5. Neurological Diseases and Disorders – #3 with 444, #1 has 1,222;
  6. Science – #10 with 83,114, #1 has 234,073.


  • Neurodegenerative Diseases – #23;
  • Neurology – #31;
  • Charities – #39.

This is very humbling. It’s also quite gratifying to find out that my attempts to share what little knowledge I have gained over the years are deemed useful by others. That’s all I want to do by providing answers on Quora.

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Wow.. I spent two days working to get a favicon to appear in the browser and use the same image (the original source for the 16×16 .ico file) for the Facebook image override (it normally pulls a random image from the website). No WordPress plugin worked at all so I had to discover what Facebook wanted (Open Graph meta tags in the <head> section) using Facebook Debugger (https://developers.facebook.com/tools/debug/og/object/) and insert my own tags in the child-theme’s header.php file:

<meta property=”og:url” content=”http://www.ericvalor.org/” />
<meta property=”og:image” content=”http://www.ericvalor.org/…/blogpic300x300…” />
<meta property=”og:site_name” content=”EricValor.org” />
<meta property=”og:title” content=”EricValor.org” />
<meta property=”og:description” content=”The Web Home of Eric N. Valor” />
<link rel=”shortcut icon” href=”<?php echo get_stylesheet_directory_uri(); ?>/favicon.ico” />

That was a very frustrating experience but I did learn a lot more about manipulating WordPress than I wanted at the moment…

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This is my last blog post at Friends4Eric.

I have decided to change my home domain to EricValor.org and in the process consolidate the blog directly into the website. The new website allows me to bring a much better website experience to you. Over the year, I expect to add more information content, including a calendar of events such as a calendar of select events and other information of high interest.

Thew new website address is www.ericvalor.org and the direct address to the blog is www.ericvalor.org/erics-blog. I believe I was able to bring all the subscribers over automatically but please excuse any errors and/or hiccups. Although my old domain will redirect to the new, this blog address won’t, so please update your bookmarks!

If you are reading this on www.ericvalor.org you are all good…

Thank you all for your and I look forward to a few more years of service to you all – until we finally have a cure!


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Open Book – Pt. 2

(sorry for the long delay between parts but I was engaged in other projects, and I had to find the top of my head)

As I said in Part 1, Elsevier, a multibillion-dollar scientific publishing company, is trying to present itself as a friend of Open Access.

Is this a joke?

Elsevier was behind a recent lobbying effort to bottle taxpayer-funded scientific research behind their paywalls. The very lifeblood of this company is its ability to keep research papers behind its subscription system. This is like Microsoft touting an Open Source initiative. This is like a lion touting a vegan diet. 

The key behind Elsevier’s business model is in the traditional name for scientific publications: papers. Believe it or not, there was a world before The Internet, when companies would disseminate information on bound collections of flat pressed dead trees. This required large installations of printing presses and binderies, and a network of distribution to deliver these papers to your door. Now there is electronic distribution which significantly lowers costs. However, Elsevier continues to charge excruciating prices for access to the very many journals it controls. Not content with that, it actually tried to buy a law that taxpayer-funded research would also be hidden behind their subscription system, even though taxpayers funded the research and funded creation of the distribution system it now uses!

The scientific process was built on collaboration and free exchange of ideas. Science was originally done by citizens enraptured by the pure pursuit of knowledge (think Benjamin Franklin). It later became a creature held captive by institutions, and its dissemination captive to those with physical distribution channels. However, now with The Internet and the access to learning and communication it provides, citizens are again becoming more involved with science. The return from discovery was never in the information of how you got there, but from the end product itself (don’t get me started about the perversion of patent law and how much that stifles innovation…).

Distribution is now extremely cheap, and business models must adjust to this new reality or get out of the way. In fact, the reality is that distribution can be done by the authors themselves and more each day are turning to free and open publication. This is the new wave that Elsevier is trying to ape. Don’t be fooled. Elsevier is not Open Access – they are Open Wallet.

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I was recently alerted to a blog called Science-Based Medicine which had a post that was rather critical of me. The post was written by David Gorski, a managing editor of Science-Based Medicine. If you read the post, you can probably understand why I took a little umbrage to Dr. Gorski’s characterization of my efforts. Below is my response to him, shared here for my readers’ convenience.

“I find your attempts to discredit me by dissembling most curious for a chap claiming to champion honest science. First of all, the multiple conflations between NP001, my personal project, and MMS are deliberately misleading. The only relationship between the three is that they contain some amount of sodium chlorite. MMS is a rather high concentration that is broken down to chlorine dioxide by the citric acid with which it is mixed. NP001 is a very low concentration of sodium chlorite delivered intravenously. My oral delivery is the same concentration as NP001, with at best about 30% delivery of NaClO2 to the blood after gut passage (according to FDA publications on animal exposure). My project (https://sites.google.com/site/alschlorite/) was intended more as an open-label experiment for people who didn’t qualify for the Phase 2 trial and in the absence of an Expanded Access Program (which some of us are working on for during the Phase 3).
NP001 and its cousin WF10 have excellent safety and tolerability in multiple studies and the case for sodium chlorite having the desired immune modulation is extensively covered in PubMed despite your claims to the contrary (please see http://www.ericvalor.org/?p=86 for an easy guide through a few of the publications by Dr. Michael McGrath, the inventor). And despite your casting doubt as to the integrity of Neuraltus by pointing at a lack of publication in PubMed, the record on clinicaltrials.gov clearly shows that Neuraltus has satisfied thus far all FDA requirements to move forward in the regulatory process for NP001 and another candidate drug (http://www.clinicaltrials.gov/ct2/results?term=neuraltus). Further, I trust the results published on Patients Like Me done by my friend known online as Persevering (http://www.ericvalor.org/?p=42). We have good reason to believe that our correlation between side-effects and live drug is accurate. I won’t reveal that right now because NP001 still has trials to go and I don’t want to pollute the subject pool.
I didn’t just guess about NP001 and run to buy a bottle of MMS like you insinuate here. I did a careful review of literature by Dr. McGrath, including email with Dr. McGrath himself. I had other sources of information which explicitly stated that sodium chlorite indeed was the active ingredient in NP001. I then worked with a chemist with years of experience using sodium chlorite in the water purification industry to examine feasability and safety. Congratulations on your own discovery, but you could have emailed me for documentation (I am quite easy to Google).
The lithium project (in which I participated) was not a collection of anecdotes but rather a self-reported trial using the standard measuring tool of the time – the ALS Functional Rating Scale or ALSFSR. This is the same questionnaire used in neurological clinics. Karen Felzer did a fantastic job analyzing the data. Unfortunately the data showed futility, like the official trials that followed ours.
The lithium project (http://alslithium.atspace.com) was organized because all other ALS organizations expressed no interest in testing the fantastic report making headlines. We patients therefore took it upon ourselves to make an initial, admittedly unofficial, trial to test the report. We knew that the results would not be as reliable as a real clinical trial, but our results would be enough to carry on further to a real clinical trial if the findings in the study paper were real. Shamed by our effort, other organizations hastily constructed trials which proved our findings. Even years later, organizations were burning precious money doing real trials when they could have looked at our results and not wasted precious time which could have been spent on other studies.
My reports are not a figment of my imagination as you suggest. Go to my site listed above and look at the video evidence I have posted. My doctors have also physically seen the improvements, much to their surprise. Although I don’t make ANY claim of definitive evidence, I do take my effort quite seriously and soberly.
The real story here, which you ignore or dismiss, is patient empowerment. For too long have we been isolated and told to just wait to die. We can use technology now to organize and, more importantly, mobilize. We now can and will take action to promote OUR agenda, not the feeble selfish agenda of certain advocacy organizations which do very little beside provide employment for their directors.
We are trained in highly-skilled technology trades. We might not be doctors, but we are engineers trained to research and resolve highly complex problems. We are capable of learning and comprehending complicated concepts. We understand the limits of our abilities and, further, that without our efforts the pace of the fight against disease is much too slow for people living today. And we have no delusion that anything we are doing is intended to replace clinical trials. Rather we intend to augment and push forward the actual science.
I will let Jamie Heywood respond further on behalf of PLM.
– Eric N. Valor”

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The Fix-Up

To communicate (and do other things like write this blog) I use a computer set up with a special infrared camera and software which allows me to control the computer with my eye. The hardware platform this system runs on is a very nice little tablet PC from TabletKiosk. I chose the ERICA system from ERT specifically because it was based on this tablet which, even 4 years later, is way more powerful than all other competitors I know save one (and the new i500T easily matches that). Being an Information Technology professional I knew that I would be doing quite a bit more than just typing and talking, and would require the computing power and features of the Sahara Slate PC.

After years of heavy, daily, use, the system started having trouble with the sliding power switch. Sometimes the power light would come on but the system would make no noise and the screen would remain blank (it would fail to POST, for my fellow geeks). My assistant would have to hold the power switch for 5 seconds to turn the machine off and then try again. This frequently resulted in a total hang which required pulling the power cable and battery. Because the machine was mounted and had a docking cradle attached, this required some disassembly to get at the battery. Needless to say, as this problem became more frequent I became more worried that each procedure would result in a fried computer.

I looked up support on the TabletKiosk site and saw that they had a nice little online Forum for questions and user support. I posted a message and also emailed tech support in the hope they would answer (mind you this system is over 3 years old). After some anonymous queries back to me for more information I was contacted by the Director of CorpComm who helped me set up a process by which they shipped me a loaner identical to my system, I popped my hard disk in the loaner, shipped my system back to them for evaluation and repair, and then the reverse. This way I was able to keep my heavily-customized work environment during the couple of weeks required to complete the process.

The problem was with the motherboard, which was replaced. I have my system back and it’s as good as new. These TabletKiosk PCs are nice and solid with a great list of features. I would recommend these to all my friends who want a reliable and powerful tablet computer that is Linux-ready (hint hint). TabletKiosk was extremely courteous and supportive and got me through what could have been a total disaster in my life.

I would like to thank by name John Kwan for his patient support and Lisa Herbert for getting the ball rolling and overseeing the process. It’s not often that CorpComm meddles with TechSupport without tactical nukes being deployed… I would also like to thank the entire TabletKiosk team for making this able to happen. I very much appreciate their products and support

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Nerd Factor Five

As an Information Technology professional I tend to accumulate equipment. I have a couple of old laptops lying around (some dating back to 1998). One of the slightly newer ones I connected to my TV via the external SVGA port (with an associated stereo sound cable connected to the headphone jack). Now I can stream Netflix and other online content to my big flatscreen TV while not using up the resources on my communication system. For independence I installed VNC which gives me full control over the remote machine. All I need is someone to power on the laptop and I am up and running.

Currently I am watching live surfing being streamed from Bells Beach, Australia. Think I’ll crack a Foster’s and enjoy!