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Three Women Blinded by Unproven Stem Cell Treatments
- bobbles 10y agoI know its not good news, but it is worth mentioning that the treatment was for an illness which causes blindness, and was injected into their eyes. It's not like some unrelated treatment was used and caused them to go blind.
- senectus1 10y agoSkim read it and it looks like it was a terribly incompetent attempt. They used STEM cells derived from a different source as to the original claims source, it was to treat a different condition and to top that off the original claim that they based their therapy on was very dubious... These women need to sue for a quackery and shut them down.
- kobeya 10y agoSomebody has to be first to get a treatment. You don't really know whether it will work until you try it. Also mentioned in the article are the cases where treatments worked as they were supposed to or better. The headline is a bit misleading because the 3 ladies in question were already going blind. The treatment was supposed to reverse the disease but failed. You could write the same headline about other treatments that are considered safe enough to try: "3 patients killed by chemotherapy treatments that failed to eliminate their cancer."
- tbrake 10y ago> Somebody has to be first to get a treatment. You don't really know whether it will work until you try it. Also mentioned in the article are the cases where treatments worked as they were supposed to or better. Other treatment mentioned != the "treatment" these 3 ladies got. Those clinics are, for want of a better phrase, peddling stem cell snake oil.
- kobeya 10y agoFirst point doesn't contradict what I said. Your second point is unsubstantiated. Nothing in medical science is absolutely certain beforehand. Sometimes we have good reason to think a treatment might work, but it fails upon trial. That is learning from a negative result, not peddling snake oil.
- lawless123 10y ago>Nothing in medical science is absolutely certain beforehand. >In one report, researchers document the cases of three elderly women who were blinded after getting stem cells derived from fat tissue at a for-profit clinic in Florida. The treatment was marketed as a treatment for macular degeneration, the most common cause of blindness among the elderly. Each woman got cells injected into both eyes. This doesn't sound like an experiment however, it sounds like they told these women it was a valid tested treatment. Why else would they get both eyes done simultaneously?
- Retric 10y agoWe don't do procedures in both eyes at the same time for many very good reasons.
- tbrake 10y ago> Your second point is unsubstantiated They're touting the use of adult stem cells [edit: from a separate source in the body] which have never been shown to provide the kind of results that embryonic stem cells have. That is snake oil. At best it wouldn't have made anything worse but also not made anything better. When your best case scenario is "you won't be any worse off than you started" you lose the right to call that a treatment. Of course I somehow doubt it was explained to those women that way. > Sometimes we have good reason to think a treatment might work, but it fails upon trial. Given the nature of the source of the stem cells, no one would have had good reason to expect this to work.
- chroem- 10y ago>They're touting the use of adult stem cells which have never been shown to provide the kind of results that embryonic stem cells have Actually that is false. As someone who is currently losing their eyesight due to retinal degeneration (and in their 20's no less), I've done quite a bit of reading on this subject. Most of the stem cell treatments and gene therapy that I've seen rely on the patient's own cell cultures in order to prevent autoimmune rejection. Normally the retina has immune privilege, but as it breaks down it becomes vulnerable to attack by the immune system, which adds an extra level of complication. Honestly, this whole thread has me pretty worried that I might be cut off from access to experimental treatments just because they're not guaranteed. I know you all mean well, but going blind with your whole life ahead of you and no treatment whatsoever is a really scary thing. These women made a fair trade, and honestly I would accept the same risks that they did. Having a chance at not being blind is better than for sure going blind.
- rb2k_ 10y agoThey had macular degeneration which usually can be slowed down or stopped while there's a bit of vision left. Now they're at "no light perception". Considerably worse.
- bsder 10y agoIn addition you can get operations where doctors do things like rotate your eye 90 degrees so that the main focal point no longer sits in the spot with macular degeneration. Sure, it only lasts a couple of years. But, when you are 80+ years old, that may be all you need.
- AstralStorm 10y agoThere are further treatments such as complex lens focal point changes to achieve a similar result.
- rb2k_ 10y agoOh, super interesting. My mother has macular degeneration and the only thing they even said was possible so far is injections with Eylea, Lucentis or Macugen. I guess she manages currently, but it's interesting to see that there are other options
- sushid 10y agoYes, but as the article mentions, there was no need for the treatment in BOTH eyes when time was not of the essence. Also, these higher risk "treatments" can be reserved for those who are medically worse off (e.g. already have loss of vision).
- cup 10y ago"Somebody has to be first to get a treatment. " True. But not before scientific due diligence is performed. Animal studies, toxicology studies, efficacy studies, safety studies etc etc etc. Not just injecting stem cells into old ladies eyes to see what happens and make some cash while doing so.
- kobeya 10y agoYes, let's just let these ladies go blind and die infirm because the treatment hadn't passed stage 3 trials yet. There is such a thing as medical experimentation under informed consent.
- fuzzy2 10y agoI very much doubt they received an adequate explanation of the risks involved. Not that any proper risk assessment existed in the first place.
- tremon 10y agoYes, let's just let these ladies go blind and die infirm That's very likely what these "doctors" were thinking.
- scott_s 10y agoI think you're thinking this is more likely to be an honest attempt at a medical treatment, with the goal of furthering scientific and medical knowledge. I think that is extraordinarily unlikely. I think it is more likely that this is a scam. My reasons are that (as others have pointed out), one does not start medical trials on humans; I am unaware of any plausible reason for why this would help in the first place (stem cells are not magic); they apparently did not follow proper protocols for eye treatments (start with one eye instead of both); the women were clearly not informed of the risks; and finally, this was a paid treatment. For more, see these two blog posts I pointed out in another comment: http://theness.com/neurologicablog/index.php/alzheimers-and-stem-cells/ http://theness.com/neurologicablog/index.php/alzheimers-and-... and http://theness.com/neurologicablog/index.php/more-stem-cell-quackery/ http://theness.com/neurologicablog/index.php/more-stem-cell-...
- simonh 10y agoI don't trust a journalist to evaluate whether this treatment was valid or not. I have more trust in the several stem cell therapy experts who wrote detailed technical takedowns of the failed treatment and contrasted it with a much better one.
- JumpCrisscross 10y ago> detailed technical takedowns of the failed treatment Any a layman could make it through?
- csydas 10y agoAre you referring to another instance where this happened or to something in the article where you felt that the journalist reporting was making an assertion? I cannot identify any statement or section within the article where the journalist themselves makes a claim or assertion as to the validity of the treatment, but instead just numerous citations and reports from other agencies and persons who are qualified to comment on it. Can you please clarify what you are discussing?
- lawless123 10y ago>I don't trust a journalist to evaluate whether this treatment was valid or not. It's safe to say a child could evaluate that blinding someone is an invalid outcome.
- erroneousfunk 10y agoIn the Japanese study, they used these cells: https://en.wikipedia.org/wiki/Induced_pluripotent_stem_cell https://en.wikipedia.org/wiki/Induced_pluripotent_stem_cell Which are very expensive and complicated to produce. They injected the cells into one eye, monitored the patient carefully, and decided to halt the experiment and research further based on some genetic findings in the injected cells. THAT'S how you do "you don't really know whether it will work until you try it" on humans. The clinic in Florida used a different type of cell: https://en.wikipedia.org/wiki/Mesenchymal_stem_cell https://en.wikipedia.org/wiki/Mesenchymal_stem_cell These are far easier to obtain (centrifuge and wash liposuctioned fat -- voila!), but have more limited uses. They can become muscle, fat, bone, cartilage, and blood cells, among a few other things, and they help repair injury -- awesome stuff! They CANNOT become eye cells. We already know that. Do not inject them into your eyes. You will go blind. Those stem cells do not belong in eyes. What the clinic did was tremendously irresponsible. This is not a matter of "someone has to be the first" There's just no evidence at all that this would work.
- aresant 10y agoThe word "treatment" in the headline made me think that this was some kind of formal study. But in reality this is literally some Florida crank lab selling a shitty third-party procedure that takes adult stem sells derived from fat tissue, and despite the fact that the "safety and effectiveness of this procedure is unknown, all three patients received injections in both eyes."!!! To be clear: this was not a test, this was not a study, this was literally three old ladies being sold on a completely unproven "stem cell" procedure by a Florida for-profit clinic. And apparently there are 100s of these clinics being run all over America with essentially no evidence / clinical trials / etc behind their treatments: http://www.npr.org/sections/health-shots/2016/09/05/491372940/researchers-question-safety-value-of-untested-stem-cell-treatments http://www.npr.org/sections/health-shots/2016/09/05/49137294... I remain stunned at the things that are heavily regulated in America vs not.
- kartan 10y ago> I remain stunned at the things that are heavily regulated in America vs not. Yes. This looks like a clear example where a regulation in place, and enforced, can save lives. > "The inaction by the FDA not only puts many patients at serious risk from unproven stem cell offerings, but also it undermines the agency's credibility," Knoepfler wrote in an email. This is part of the goal, I guess. To cripple regulatory agencies and then close them because they aren't effective is a widely used tactic. I hope there is a bright future for stem cell medicine, but regulations should be included in that future so it serves citizens and not just for-profit organisations.
- kybernetyk 10y ago> but regulations should be included in that future so it serves citizens Regulations rarely serve citizens. They usually serve special interest groups.
- cloudwalking 10y agoCitation needed. I can think of quite a few food, consumer, financial, medical, and environmental regulations that directly serve me and my fellow citizens.
- jacquesm 10y agoI read about this earlier today in some regular news publication. It seems the word 'treatment' is not applicable here. The bad thing is that news items like this will likely cause some damage to the field of stem cell treatments and related research.
- ipsum2 10y agoThis was also covered by BBC, and had a few more details. http://www.bbc.co.uk/programmes/p04w86gz http://www.bbc.co.uk/programmes/p04w86gz Off the top of my head: - One of the researchers had his medical license revoked - Some patients paid up to $20,000 for the treatment. - Very few, if any, patients had any improvement. Many had decreased eyesight after the treatment.
- BrailleHunting 10y agoThis is what happens with a perverse, for-profit medical-industrial complex: snake oil. Also worth mentioning is the fake "emergency rooms" and "urgent care" fly-by-night shops which have sprung up on the side of roads in much of the Southern US. People will inevitably die because of the confusion and misrepresentation caused by these shoddy scammers.
- lawless123 10y ago> "emergency rooms" and "urgent care" fly-by-night shops which have sprung up on the side of roads in much of the Southern US. What are these?
- djsumdog 10y agoI too am curious about this. I can't find anything on "fake emergency rooms." I wonder if he's talking about those homeless health clinics on wheels. I always thought that they were staffed by volunteer or non-profit funded Doctors, Nurse Practitioners, etc.
- shiftpgdn 10y agoThere are probably 2-3 of them in any major affluent suburb in the south. They are typically built into a strip center or on a pad site near one (because of the cheap land.) Most of them are emergency rooms by the letter of the law only meaning they don't have an operating theater, mri/ct machines, huge amounts of trained staff. They typically have a few stabilization tools and a nurse practitioner on staff. Anecdotally I was sent to one by my primary care doctor because she thought I was having a heart attack as a result of month long strep/sinus infection. They gave me a bag of saline and charged me $1000 (insurance ER rate) for the privilege. I think these places exist only to bilk parents with crying children in the middle of the night and people who don't know any better.
- RangerScience 10y agoIs there any indication that their resulting blindess was the result of the stem cells, and not as a result of the delivery mechanism?
- amelius 10y agoI just hope the public will not interpret this news as "stem cells = snake oil".
- scott_s 10y agoI have the opposite fear. Because there is enormous potential in treatments from stem cells, I fear more quacks will exploit this potential in pushing scam, for-pay treatments using the thin veneer of stem cells to lure people in. For more, see http://theness.com/neurologicablog/index.php/alzheimers-and-stem-cells/ http://theness.com/neurologicablog/index.php/alzheimers-and-... and http://theness.com/neurologicablog/index.php/more-stem-cell-quackery/ http://theness.com/neurologicablog/index.php/more-stem-cell-...
- mrfusion 10y agoI actually see this as a case of over regulation. I think if it were easier to get legitimate experimental treatments (with some sensible regulation) these kind of shops wouldn't exist and these women wouldn't have resorted to this. It's the same concept as the argument for safe and legal abortions.
- maxxxxx 10y agoHow would this sensible regulation look like?
- timthelion 10y agoAnyone else notice that they were injected in BOTH EYES at once. That is totally non-standard for non-proven eye therapies. Even many run of the mill treatments treat one eye first to make sure there isn't some kind of bad reaction.
- phkahler 10y ago>> Each woman got cells injected into both eyes. Gross incompetence. Why would you ever do both at the same time? Had they done one first, these people would at least have sight in one eye and know not to mess with it.
- Pica_soO 10y agoWhat happened to the woman who tried those experimental telomere prolonging treatment?
- thedailymail 10y agoBBC Worldwide radio has a 30-minute investigation into a different clinic, which has also been damaging peoples' vision by injecting "stem cells" into their eyes as part of a "clinical study" which they have to pay $20K to join. No malpractice insurance and one of the two founders had previously surrendered his medical license. For me, this is where the arguments based on the idea that everyone should be free to decide for themselves and take responsibility for their own decisions really falls apart. A market that is unregulated w.r.t adventurism is a market that is unprotected against fraud. http://www.bbc.co.uk/programmes/p04w86gz http://www.bbc.co.uk/programmes/p04w86gz