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First UK child to receive gene therapy for fatal genetic disorder is now healthy

livescience.com

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Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#191

Post by mckravchyk »

gambiting wrote: post #187
mckravchyk wrote: post #185

Earlier quoted context omitted.

Poland. This is a recent change introduced in 2022. It used to be some $100/mo

So I disagree with this statement where you said >>you have to fund the super expensive good for nothing public one anyway. My father had battled cancer in Polish oncology hospitals and has received nothing but top tier treatment wherever he went. What's more, NFZ completely funded the treatment with then-experimental Glivec for him, which was billed at around 200k zł/year(in US, a year of Glivec treatment is around…

I'm sorry, I have been lucky to only have limited experience with the system to date and it did not make a good impression. I take it back but I still think that 5 - 9 % of income before tax for healthcare is outrageous.

> but that's universally true pretty much everywhere in Europe right now, the waiting times in countries with public healthcare systems have inflated into infinity due to a combination of factor

I have heard that's not the case in Germany and the private appointments are almost not a thing. I could be wrong though.

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#192

Post by raffraffraff »

flir wrote: post #141
raffraffraff wrote: post #138

Earlier quoted context omitted.

Vim or Emacs. But vim is better.

Yeah, if you want DNA littered with ESC, CTRL+c, CTRL+z, CMD+q, CMD+w, ALT+F4... Don't take the chance, people. Edit your DNA with notepad.

Noooo! Then you'll have ^M on each line!

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#194

Post by [deleted] »

bglazer wrote: post #21
SamBam wrote: post #4

The article was skimpy on the details. Can someone explain how this part works? > The new gene therapy [...] works by inserting into the body working copies of the genes that are faulty in MLD, thus restoring the ability to break down sulfatides. How does the new copy of the gene get into every existing cell that needs it? A virus?

Yes, it's a virus, specifically a lentivirus, which inserts its own genome into the cells DNA, including the therapeutic gene. Looks like they first extract bone marrow from a patient, apply the virus which adds the gene, then they put the "fixed" bone marrow cells back into the patient (probably after killing most existing bone marrow through some really unpleasant procedures). The re-inserted, treated cells then ex…

[deleted]

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#195

Post by [deleted] »

bglazer wrote: post #21
SamBam wrote: post #4

The article was skimpy on the details. Can someone explain how this part works? > The new gene therapy [...] works by inserting into the body working copies of the genes that are faulty in MLD, thus restoring the ability to break down sulfatides. How does the new copy of the gene get into every existing cell that needs it? A virus?

Yes, it's a virus, specifically a lentivirus, which inserts its own genome into the cells DNA, including the therapeutic gene. Looks like they first extract bone marrow from a patient, apply the virus which adds the gene, then they put the "fixed" bone marrow cells back into the patient (probably after killing most existing bone marrow through some really unpleasant procedures). The re-inserted, treated cells then ex…

[deleted]

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#196

Post by [deleted] »

bglazer wrote: post #21
SamBam wrote: post #4

The article was skimpy on the details. Can someone explain how this part works? > The new gene therapy [...] works by inserting into the body working copies of the genes that are faulty in MLD, thus restoring the ability to break down sulfatides. How does the new copy of the gene get into every existing cell that needs it? A virus?

Yes, it's a virus, specifically a lentivirus, which inserts its own genome into the cells DNA, including the therapeutic gene. Looks like they first extract bone marrow from a patient, apply the virus which adds the gene, then they put the "fixed" bone marrow cells back into the patient (probably after killing most existing bone marrow through some really unpleasant procedures). The re-inserted, treated cells then ex…

[deleted]

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#197

Post by [deleted] »

bglazer wrote: post #21
SamBam wrote: post #4

The article was skimpy on the details. Can someone explain how this part works? > The new gene therapy [...] works by inserting into the body working copies of the genes that are faulty in MLD, thus restoring the ability to break down sulfatides. How does the new copy of the gene get into every existing cell that needs it? A virus?

Yes, it's a virus, specifically a lentivirus, which inserts its own genome into the cells DNA, including the therapeutic gene. Looks like they first extract bone marrow from a patient, apply the virus which adds the gene, then they put the "fixed" bone marrow cells back into the patient (probably after killing most existing bone marrow through some really unpleasant procedures). The re-inserted, treated cells then ex…

[deleted]

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#198

Post by ta1243 »

mckravchyk wrote: post #191
gambiting wrote: post #187

Earlier quoted context omitted.

So I disagree with this statement where you said >>you have to fund the super expensive good for nothing public one anyway. My father had battled cancer in Polish oncology hospitals and has received nothing but top tier treatment wherever he went. What's more, NFZ completely funded the treatment with then-experimental Glivec for him, which was billed at around 200k zł/year(in US, a year of Glivec treatment is around…

I'm sorry, I have been lucky to only have limited experience with the system to date and it did not make a good impression. I take it back but I still think that 5 - 9 % of income before tax for healthcare is outrageous. > but that's universally true pretty much everywhere in Europe right now, the waiting times in countries with public healthcare systems have inflated into infinity due to a combination of factor I ha…

Is it really that high?

https://www.icalculator.info/poland.html

Says that people pay 1.25% in health insurance.

Poland in general pays 6% of its GDP on health care. The US spends 3 times that.

Re: First UK child to receive gene therapy for fatal genetic disorder is now healthy

#199

Post by HlessClaudesman »

gambiting wrote: post #188
HlessClaudesman wrote: post #143

Earlier quoted context omitted.

Yeah I can see there are many sides, as a society we an interest in keeping elections fair, with one person one vote being a good maxim. But consider the case of a parent of a child with profound disabilities, that child is now an adult of voting age. Wouldn't a person with disabilities have an interest win voting out a candidate / party who constantly rails against providing funding for disabled services? Why should…

>>Wouldn't a person with disabilities have an interest win voting out a candidate / party who constantly rails against providing funding for disabled services? Sure, but the point is, you don't know this - you can only reasonably guess. And to make a vote on behalf of another person, by effectively guessing what they might want, does not sit right with me.

That's fine, we can agree to disagree. The fact that someone can't express their interests doesn't mean they don't have any interests.
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