7 ms·

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 trea

by kobeya 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. 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 ago
  First 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 ago
    We 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 ago
They 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 ago
  In 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 ago
    There are further treatments such as complex lens focal point changes to achieve a similar result.
    - rb2k_ 10y ago
      Oh, 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 ago
Yes, 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 ago
  Yes, 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 ago
    I 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 ago
    Yes, let's just let these ladies go blind and die infirm That's very likely what these "doctors" were thinking.
  - scott_s 10y ago
    I 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 ago
I 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 ago
  Are 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 ago
In 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.

by kobeya 10y ago

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 ago
First 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 ago
  We 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 ago

They 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 ago
In 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 ago
  There are further treatments such as complex lens focal point changes to achieve a similar result.
  - rb2k_ 10y ago
    Oh, 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 ago

Yes, 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 ago
Yes, 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 ago
  I 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 ago
  Yes, let's just let these ladies go blind and die infirm That's very likely what these "doctors" were thinking.
- scott_s 10y ago
  I 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 ago

I 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 ago
Are 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 ago

In 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.