Finally, hope in the near future for those... - Macular Society

Macular Society

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Finally, hope in the near future for those with WMD using stem cells treatment.

RandyM profile image
8 Replies

I'm not sure if anyone else saw this, but I just got it in my email this morning from medscape.

medscape.com/viewarticle/89...

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RandyM profile image
RandyM
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ironbrain profile image
ironbrain

A previous post on the subject:

healthunlocked.com/maculars...

I heard this on the BBC Radio 4 news about an hour ago. Bit worrying, I feel.

telegraph.co.uk/news/2018/1...

in reply toironbrain

I see what you mean, ironbrain. But I am asking myself: how advanced was their specific conditions? Was it a last chance for them anyway? Would they have resorted to that treatment if there had been other options?

ironbrain profile image
ironbrain in reply to

An implant is the only hope with known technology and science for my left eye and I really can't wish for greater and faster advances in the use of stem cells. This with the larynx just looks like a set back for the field of science, medicine and technology.

With the retina, we seem to be stuck at finding the best method of getting the cells in place and whether to use cells developed from human embryo (with a need to prevent rejection) or cells developed from the patient's own tissue. Plenty of scope to take the wrong route and if practitioners and researchers aren't going to be too honest ... There's already people blinded with clinics trying d methods that have failed and presumably there's a monetary incentive as well as one of prestige.

I simply can't follow developments closely enough.

StokeySue profile image
StokeySue in reply toironbrain

I think the Telegraph report is very different - the deaths seem more to do with transplant surgery and dodgy science than any intrinsic risk of stem cells, the laryngeal surgery was a far more radical and invasive treatment than the retinal treatment, and in patients already very ill. Not sure why it’s come to press attention now, the issue seems to have been around for a while

sciencemag.org/news/2018/03...

RandyM profile image
RandyM in reply toironbrain

Thanks ironbrain. That article is extremely disturbing! I don't think I will ever try out any clinical research programs until they prove 99% effective. Those poor girls! I spoke to my retinal doc and he said there was a small stem cell trial in FL in the USA and all 5 or 6 patients went totally blind! Using stem cells is an amazing discovery, but not perfected as yet.

StokeySue profile image
StokeySue in reply toRandyM

Unfortunately, the point of clinical research is that you don't do it if the result is 99% certain - that's not research! London Project are being very cautious. I spent 40 years in clinical research, and I wouldn't rule out a stem cell trial for myself, but I'm definitely not suitable for current studies. Stem cell therapies have been approved for a limited number of diseases, and are in use, notably for bone marrow replacement

I found a report of the Florida "trial" it seems it was not even a real trial (though listed on the clinical trials website, but a commercial producer of stem cells actually selling them as treatment for AMD, though not approved or tested for this use. That's very, very, different from a properly planned, regulated, and conducted clinical trial such as was done in London, preceded by years of non-clinical research, and a proper protocol reviewed and approved by both the hospital and the government authorities before any treatment was given.

As this report says, it is extraordinary that anyone using a treatment for the first time would inject both eyes on the same day - that is almost unbelievable, and definitely would get a protocol returned without approval if correctly submitted. Treating both eyes strikes me as gross negligence,

theguardian.com/science/201...

RandyM profile image
RandyM in reply toStokeySue

StokeySue, yes, I believe that was the one my doc was telling me about. It's a shame that it was not properly planned and regulated. Thanks for the link and extra info. It is shocking indeed! I am sure there is a great future in the stem cell

therapy but I feel it is way too early to hope for more "body parts" being repaired.

StokeySue profile image
StokeySue

This is a secondary report of the results from the London Project to Cure Blindness, which were reported earlier this year and indeed discussed on this forum. I heard Prof Da Cruz speak about it at the Macular Society Conference a few weeks ago. The research is promising, but it will be years before there is any hope of a routine treatment.

If you want to follow the research, which is supported by the Macular Society, then probably best to look at the London Project’s own site or in the Macular Society news

thelondonproject.org/?q=ins...

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