NurOwn Petition Expired!

[Tess]

Possibly a bit of a rant here, but never know what words I will type out when I have some fire in me..

So I noticed the petition for NurOwn UK (the only drug that seemingly has reversed ALS/MND symptoms of those suffering in the U.S- those who were wheelchair bound have been seen to walk again) has expired on 19th September. The petition only had approx 65,000 signatures when it needed 100,000 to be discussed in parliament. These petitions last for 6 months. I'm gobsmacked that this never got the 100,000 required!!

So then I go onto social media today to see a new petition, although completely unrelated (as you can petition anything by the looks of it)....a petition to allow more than 15 to attend a wedding due to the newly imposed lockdown restrictions. Now I always have to take a step back and a deep breath. I understand that grief is relevant to what you have experienced in your lifetime and the cancellation of a wedding that has been in the planning for some may be the biggest grief they've experienced, the expense, the business for caterers/florists/venues, the emotion etc. But at some point you just think....hmmm if that petition can get to 100,000 (not yet but I just know it will somehow considering it's at 45,000 in its first week) and it's a petition not involving life or death, then how the heck can't a treatment to try to save and prolong lives not get the interest!

Sweeping statement here, but is this due the general demographics of those who are affected by MND? Computer literacy? (yet I still see so many individuals of all ages on this forum) Is this due to the lack of knowledge/leap of faith in the NurOwn trial? Is there not enough publicity around MND in general? I'm so confused.

One day I sit and think realistically, that we know there won't be a cure in our lifetime so no point wasting energy on it and the next day I think why should I sit and let that be the case, I should be more proactive about this for my partner.

What are peoples thought on the petition expiring? Should we start the petition up again? Is it worth it? Am I on to plums?


Tess

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[Barry52]

Hi Tess,

I don’t disagree with your point on petitions and I question why some are raised in the first place but as you say people have different priorities. Regarding NurOwn the clinical evidence does not stack up and even if it got to review by parliament it would be ruled out on the basis of cost. Stem cell treatment for other diseases may prove beneficial but for MND it is likely to be gene editing that shows promise. There are drug trials going on which may help arrest the rate of progression and we should focus on these. The life of everyone living with MND is important and we know that 5000 more every year will succumb but we have to recognise that many life limiting diseases have a potential treatment but cost is a factor.

I am hopeful for a treatment, not necessarily a cure soon as 30 years with nothing but riluzole is a poor show. You asked the question and I will be honest and admit that I didn’t sign the petition for the reasons I have outlined.

Barry

[matthew55]

There is a song about this: Michael Jackson's They don't care about us. Truth. ☹️x

[denise]

Hi Tess
I agree with what Barry says. I also think even though a lot of people have been impacted by mnd still a lot of people don't know about it. Just reading about so many complaining of how difficult it is to even get a diagnosis.
I didn't know about the petition and haven't signed it. No one seems to have discussed it here other than you bringing it up.
this disease has been around for a long time but I think at the moment, no matter what, the covid virus is going to take priority. Everything else is going to take a step back with regard to medical treatment as we all well know.

[Doug Carpenter]

This presentation gives a good overview of MND research related to stem cells, including mention of Brainstorm's research:

https://www.youtube.com/watch?v=40oSnT8escs&t

Doug

[Onein300]

Barry is 100% spot on.

Let me start with the indesputable facts but then give an upbeat view on MND research and candidate treatments.

Brainstorm Nurown has NOT been proven to have any effect as yet. The phase 2 did not show ANY difference between placebo and treatment. If you read the phase 2 results it says this precise statement.

It was only after a post analysis of an arbitrary group of so called rapid progressors within the Phase 2 trial that a treatment hint was seen. This is why the phase 3 had to go ahead. However, that hint in post analysis, could mathematically be by sheer luck (I won’t go into the detailed maths)! So any post analysis hypothesis always has to be proven/disproven by a larger phase 3.

The phase 3 has yet to end (in the next month or so) and until that date we have no idea whether it works or not.

One thing is for sure, because of the phase 2 results, the effect is more likely to be marginal, and possibly won’t help everyone. It doesn’t look like a miracle treatment.

But we just have to wait for the results. It could work!

Re the petition, it was never going to be debated in Parliament for the exact reasons I state, ie not proven, so no discussion yet to be had. And also the government had already responded with what it could truly say.

Right, the upbeat part of my response?

If it is shown to be effective, or any other treatment comes along, the MND Association and the community would get behind it like never before, and we will see action quite unlike anything to get access to the drug.

But also, there are some major advances being made and I truly believe we will see a group of our community have successful treatment options in the 2 or 3 years.

[Tess]

Thanks for the responses. Interesting to get people's take on it.

I think it's when you feel helpless, you want to be doing something more proactive and the idea that if an individual is dying anyhow then what's the harm in trying a new treatment with even the slightest possible effectivensess?...almost wish I was decent at science in school and then could have carried on down that route, however realistically I never knew life was going to end up like this. Just a shame for those past and present that some don't have 2 or 3 years to wait.

Thanks for the link Doug, I'll have a look.

Tess
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[Onein300]

Yes it always appears that the “if dying anyway, why not try anything” overrides all other concerns.

However, it doesn’t take long to realise that is a recipe for disaster regarding

1) who pays? - These treatments are not cheap,
2) the safety for the many is vital. Although the individual may see the logic, if a drug is made available, then all may take and the harm then starts to be more relevant.
3) There are worse things than death. Imagine a patient, who yes is progressing, but then is blinded or left in extreme pain from a treatment? And they may not be progressing as fast as it appeared. Phase 1 and 2 safety tests are never the end of the game. They only test for safety over 6/12 months. A lot of hyper dangerous issues arise beyond that.metc etc

Without regulation we are in the game of anarchy.

I have seen numerous prospective treatments come and go. It’s hard for us living now, but that will always the case.

We absolutely must not risk eventual effective treatments by taking short cuts now. Gene therapy was put on hold for 10 years after an irresponsible experiment. The regulators locked down etc.

If we cry wolf too early.......

But as I say, things are moving,,,

[matthew55]

Without hope what is there? 🤔

[Olivia H]

I've lived with this for almost 9 years now, and I do get frustrated that many neurological conditions continue to evade much real progress in terms of therapies, let alone cures or research into prevention. Most people I talk to still assume MS is much more common than MND, which it isn't. For my part, I will never accept my fate is just a few years, I intend to live well and long, with some adaptations and having to adjust expectations...but, doing things I can enjoy. Still very much my life. Matthew 100% true hope, and a sense of purpose, are absolutely essential.
Olivia.

[GaryM]

I've no real knowledge on this topic, but I assumed that the lack of progress was because most research was funded by drug companies who want to make profits. So they are mainly interested in illnesses that are common and last for many years. If only a small percentage of the population are going to benefit it becomes uneconomic to develop potential treatments. Compare with the effort being put into Covid-19.

[matthew55]

You Might die of Corona You Will Die of MND. 😠

[Shaun]

GaryM you’ve hit the nail on the head, there’s not enough of us to make a significant impact on the public, or make a viable profit for the drug companies. It’s also my opinion that’s how all governments past, present and future treat it, most of us are not around long enough, and those us left with slower progression are not taken seriously. It’s all about value for money
Everybody knows someone who has had some form of cancer, but before diagnosis I didn’t know anyone with MND. We are the forgotten few.
rant over , on with life, I’m off to the pub whist I can still can
shaun