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Now comes the hard question, how will the US payer system afford it? "An August report from the nonprofit Institute for Clinical and Economic Review found that

Now comes the hard question, how will the US payer system afford it? "An August report from the nonprofit Institute for Clinical and Economic Review found that the treatment and similar gene-editing therapies for sickle cell disease would be cost-effective if priced between $1.35 million and $2.05 million. In the U.S., patients with the condition and their insurers pay on average between $1.6 million and $1.7 million for disease management over the course of a lifetime." Source: https://www.politico.com/news/2023/12/08/fda-gene-editing-therapy-approval-00130814?cid=politico_bsky https://www.politico.com/news/2023/12/08/fda-gene-editing-th...

codedokode 3y ago
[flagged]
- csdvrx 3y ago
  > decided not to have children Most people seem to have a preference for having children. > People must be more responsible. That's another preference, but unfortunately for you it's a minority preference while preferences are averaged (democracry) then encoded (law) at the society level. So what's happening is the opposite: people who prefer not having children will be made to subsidize the costs of these expansive treatments. What's interesting is that there's also a taboo of editing DNA, but this decision shows the societal preference for having children is greater than this taboo. So maybe this taboo is just a preference after all, or a path dependant result due to the precedent of eugenism?
- iandanforth 3y ago
  You're going to want to avoid using language straight out of GATTACA if you want to have a real conversation on this topic.
  - skullone 3y ago
    We voluntarily did DNA tests on both of us to rule out any parental defects, as well as tests in utero to see if there were issues. Luckily there were none, but we had some discussions on what we might do. It seems reasonable and responsible to perform these tests to be informed on your major life choices.
    - itishappy 3y ago
      It seems reasonable from an informed person choice perspective, but (imho) rather uncomfortable as a government mandated breeding incentives program. If you don't mind sharing, what was the (rough) cost to you for the testing?
      - skullone 3y ago
        I think insurance paid for the tests in fact. We had the doctors collect stem cells from the umbilical cord and they're stored at some place. That was like $1000 each kid, and $100 a year to keep. But after like 10 years you get some money back if you don't use them and they get "donated" to someone or to research.
- Omni5cience 3y ago
  This feels like the plot to a dystopian science fiction story. You’re effectively arguing in favor of eugenics…
  - ortusdux 3y ago
    For the ignorant, Wikipedia also says that Sickle Cell disproportionately affects Africans and people of African descent (75% of cases are in Africa).
- GoldenRacer 3y ago
  What genes do you think we should be testing for and which ones do you think are severe enough that you parents with those genes shouldn't have children? Almost everyone has some sort of gene that isn't great. They might have a family history of Alzheimer's, maybe a family history or some sort of cancer, or bipolar disorder, or any other of 100 different serious illnesses. Humans would go extinct if we only allowed those with perfect genes to reproduce. Oh, and with sickle cell, you're going to be in particularly hot water with suggestions like that given the fact it's mostly African Americans who have the gene.
  - codedokode 3y ago
    I doubt this. If majority of population had severe incurable diseases then humanity wouldn't survive, and healthcare would collapse. I think (sorry, no statistics) that majority of population are healthy enough to do hard physical work.
    - itishappy 3y ago
      Consider that traits can be recessive (like sickle cell anemia) so a healthy population can still produce children with severe incurable diseases.
    - GoldenRacer 3y ago
      I never said the majority of the population has severe incurable diseases. I said that have genes that aren't great (maybe they have a predisposition for certain diseases or they're a carrier but are healthy themselves). Also, many diseases don't effect you until after you're past reproductive age. Evolution doesn't care if you get Alzheimer's at 70 but it still has a fairly large burden on our modern day society. Sickle cell is particularly interesting because the gene that causes it makes the carriers less susceptible to malaria. So there actually was an evolutionary pressure for people in areas with high levels of malaria to have it (which is why it's so common among African Americans). Apparently it's better to die of sickle cell at 40 after you've had kids then die of malaria when your 10.
- pkaye 3y ago
  Newborns are already screened at birth for SCD in the US. https://www.cdc.gov/ncbddd/sicklecell/documents/factsheet_scicklecell_status.pdf https://www.cdc.gov/ncbddd/sicklecell/documents/factsheet_sc...
- dragonwriter 3y ago
  > According to Wikipedia, sickle cell disease is a genetic disease meaning that it is caused by mistakes in DNA. If parents did DNA testing and were warned that they are carriers of invalid DNA and decided not to have children, maybe there would be no need to do costly research and expensive treatment. The sickle cell allele is also a malaria resistance allele. Heterozygous = malaria resistance. Homozygous = sickle cell disease. Eugenics through breeding control in general is quite problematic, but deliberately breeding out disease resistance just seems like a particularly bad idea even beyond the general problems with eugenics.
  - codedokode 3y ago
    There are other DNA mutations that give no advantage. For example, a mutation that causes nerves to die gradually.
    - dragonwriter 3y ago
      > There are other DNA mutations that give no advantage Yes, but that's not relevant to this discussion.
trident5000 3y ago
Any new product is going to start out as expensive and this likely isnt a market realized price. This is the first of its kind. It probably still wont be cheap but its not going to be this absurdly priced in the future considering even the insurance companies likely wont pay for this.
huytersd 3y ago
You answered your own question. The taxpayer already pays the same amount for lifetime treatment. This is just going to be the same except the person can lead a completely normal life after this. Also over time this will probably be much, much cheaper than the current lifetime treatment. There’s no reason a lot of the process can’t be easily automated.
- elektor 3y ago
  No, I did not "answer my own question". These therapies are priced at $2.2 and $3.1 million, much greater than their calculated cost-effective price. And these are not small molecules that can be easily made generic, so not likely to get that much cheaper over time.
  - maxerickson 3y ago
    Plasmid production is pretty well industrialized. Lots of biotech drugs/treatments ferment plasmids as a step in their process (for example the Covid mRNA vaccines that cost $25). I imagine an expensive part of this process is incubating the treated stem cells to increase their numbers, and then just the cost of the hospital time while the new cells establish and the patients immune system recovers from the chemotherapy.

codedokode 3y ago

[flagged]

csdvrx 3y ago
> decided not to have children Most people seem to have a preference for having children. > People must be more responsible. That's another preference, but unfortunately for you it's a minority preference while preferences are averaged (democracry) then encoded (law) at the society level. So what's happening is the opposite: people who prefer not having children will be made to subsidize the costs of these expansive treatments. What's interesting is that there's also a taboo of editing DNA, but this decision shows the societal preference for having children is greater than this taboo. So maybe this taboo is just a preference after all, or a path dependant result due to the precedent of eugenism?
iandanforth 3y ago
You're going to want to avoid using language straight out of GATTACA if you want to have a real conversation on this topic.
- skullone 3y ago
  We voluntarily did DNA tests on both of us to rule out any parental defects, as well as tests in utero to see if there were issues. Luckily there were none, but we had some discussions on what we might do. It seems reasonable and responsible to perform these tests to be informed on your major life choices.
  - itishappy 3y ago
    It seems reasonable from an informed person choice perspective, but (imho) rather uncomfortable as a government mandated breeding incentives program. If you don't mind sharing, what was the (rough) cost to you for the testing?
    - skullone 3y ago
      I think insurance paid for the tests in fact. We had the doctors collect stem cells from the umbilical cord and they're stored at some place. That was like $1000 each kid, and $100 a year to keep. But after like 10 years you get some money back if you don't use them and they get "donated" to someone or to research.
Omni5cience 3y ago
This feels like the plot to a dystopian science fiction story. You’re effectively arguing in favor of eugenics…
- ortusdux 3y ago
  For the ignorant, Wikipedia also says that Sickle Cell disproportionately affects Africans and people of African descent (75% of cases are in Africa).
GoldenRacer 3y ago
What genes do you think we should be testing for and which ones do you think are severe enough that you parents with those genes shouldn't have children? Almost everyone has some sort of gene that isn't great. They might have a family history of Alzheimer's, maybe a family history or some sort of cancer, or bipolar disorder, or any other of 100 different serious illnesses. Humans would go extinct if we only allowed those with perfect genes to reproduce. Oh, and with sickle cell, you're going to be in particularly hot water with suggestions like that given the fact it's mostly African Americans who have the gene.
- codedokode 3y ago
  I doubt this. If majority of population had severe incurable diseases then humanity wouldn't survive, and healthcare would collapse. I think (sorry, no statistics) that majority of population are healthy enough to do hard physical work.
  - itishappy 3y ago
    Consider that traits can be recessive (like sickle cell anemia) so a healthy population can still produce children with severe incurable diseases.
  - GoldenRacer 3y ago
    I never said the majority of the population has severe incurable diseases. I said that have genes that aren't great (maybe they have a predisposition for certain diseases or they're a carrier but are healthy themselves). Also, many diseases don't effect you until after you're past reproductive age. Evolution doesn't care if you get Alzheimer's at 70 but it still has a fairly large burden on our modern day society. Sickle cell is particularly interesting because the gene that causes it makes the carriers less susceptible to malaria. So there actually was an evolutionary pressure for people in areas with high levels of malaria to have it (which is why it's so common among African Americans). Apparently it's better to die of sickle cell at 40 after you've had kids then die of malaria when your 10.
pkaye 3y ago
Newborns are already screened at birth for SCD in the US. https://www.cdc.gov/ncbddd/sicklecell/documents/factsheet_scicklecell_status.pdf https://www.cdc.gov/ncbddd/sicklecell/documents/factsheet_sc...
dragonwriter 3y ago
> According to Wikipedia, sickle cell disease is a genetic disease meaning that it is caused by mistakes in DNA. If parents did DNA testing and were warned that they are carriers of invalid DNA and decided not to have children, maybe there would be no need to do costly research and expensive treatment. The sickle cell allele is also a malaria resistance allele. Heterozygous = malaria resistance. Homozygous = sickle cell disease. Eugenics through breeding control in general is quite problematic, but deliberately breeding out disease resistance just seems like a particularly bad idea even beyond the general problems with eugenics.
- codedokode 3y ago
  There are other DNA mutations that give no advantage. For example, a mutation that causes nerves to die gradually.
  - dragonwriter 3y ago
    > There are other DNA mutations that give no advantage Yes, but that's not relevant to this discussion.

trident5000 3y ago

Any new product is going to start out as expensive and this likely isnt a market realized price. This is the first of its kind. It probably still wont be cheap but its not going to be this absurdly priced in the future considering even the insurance companies likely wont pay for this.

huytersd 3y ago

You answered your own question. The taxpayer already pays the same amount for lifetime treatment. This is just going to be the same except the person can lead a completely normal life after this. Also over time this will probably be much, much cheaper than the current lifetime treatment. There’s no reason a lot of the process can’t be easily automated.

elektor 3y ago
No, I did not "answer my own question". These therapies are priced at $2.2 and $3.1 million, much greater than their calculated cost-effective price. And these are not small molecules that can be easily made generic, so not likely to get that much cheaper over time.
- maxerickson 3y ago
  Plasmid production is pretty well industrialized. Lots of biotech drugs/treatments ferment plasmids as a step in their process (for example the Covid mRNA vaccines that cost $25). I imagine an expensive part of this process is incubating the treated stem cells to increase their numbers, and then just the cost of the hospital time while the new cells establish and the patients immune system recovers from the chemotherapy.