4 ms·

My son as diagnosed with B-ALL (Leukemia) last year, and one of the drugs on this list was on the table. His genetic screening came back as it not being require

My son as diagnosed with B-ALL (Leukemia) last year, and one of the drugs on this list was on the table. His genetic screening came back as it not being required/appropriate, but it really opened my eyes. I have health coverage that means I wouldn't have paid a cent, but I didn't know that at first, and the feeling that price tag left me with was something I won't forget. A cancer diagnosis is hard. The fact that not only may you lose a loved one, but then to confront the cost of treatment during the phase when you are just trying to accept that diagnosis is something else. Even without that drug I would be bankrupt if I had chosen a different career that afforded my family less coverage.

grecy 5y ago
> Even without that drug I would be bankrupt if I had chosen a different career that afforded my family less coverage The knowledge that hundreds of millions of people in the richest country that has ever existed live like that sickens me. My Mum was diagnosed with stage four lung cancer. She had radiation, chemo, 4 different trail drugs and more pills and doctor visits than I ever want to remember over two and half years. Multiple multi-day stays in hospital and of course all the at-home care towards the end. It was horrible, and I wouldn't wish it on the worst person in the world. None of it cost a cent out of pocket, and my parents are both retired teachers (average middle class) with just normal public healthcare. Australia can figure this out but the USA can't? Feels more like doesn't want to.
- mnouquet 5y ago
  > Australia can figure this out but the USA can't? Feels more like doesn't want to. I went through the cost/revenue data from public Big Pharma companies a few years ago, long story short, the US prices are subsidizing the rest of the world's (ie. really only first world countries) "free" healthcare.
  - grecy 5y ago
    > the US prices are subsidizing the rest of the world's (ie. really only first world countries) "free" healthcare. I hear that touted so often, and I've never seen a shred of evidence to support it. Also, if it's true - why aren't US citizens rioting in the streets about it? Surely they don't want their tax dollars paying for other countries to have more affordable healthcare than they do themselves! Just take away the profits of big pharma and health insurance companies in the US and let me know how much cheaper the entire thing would be.
    - mnouquet 5y ago
      > Just take away the profits of big pharma and health insurance companies in the US and let me know how much cheaper the entire thing would be. It would certainly be infinitely cheaper, yet, all that money would be diverted to funeral directors.
      - grecy 5y ago
        > It would certainly be infinitely cheaper, yet, all that money would be diverted to funeral directors Strangely enough in plenty of countries that money goes towards actually providing care for people, or in fact, the people just get to keep it for themselves because it's all so much cheaper. Your argument is like saying tons of people will be without internet if everyone uses much cheaper municipal broadband, despite the evidence proving otherwise.
        mnouquet 5y ago
        The complexity of providing online connectivity is many several order of magnitude lower than solving complex multi-factorial health related problems, often with each case being unique, or affecting only a handful of people on earth. A better analogy would be to expect wired internet connectivity at the top of the Everest summit for $19.99/month with free installation fees. Even this would be orders of magnitude below the complexity of the rare disease treatments.
        grecy 5y ago
- willcipriano 5y ago
  > The knowledge that hundreds of millions of people in the richest country that has ever existed live like that sickens me. This should make you feel better. Poor kids with leukemia would get CHIP in the US[0]. Similarly depending on your mother's age she may qualify for Medicare[1] or if so sick that she had little to no income Medicaid[2], but since shes a retired teacher she likely would have a pension with a state provided healthcare plan. What is a problem is being lower middle class and having a chronic condition that is not disabling, too poor to afford insurance yet not poor enough for assistance. [0]https://en.m.wikipedia.org/wiki/Children%27s_Health_Insurance_Program https://en.m.wikipedia.org/wiki/Children%27s_Health_Insuranc... [1]https://en.m.wikipedia.org/wiki/Medicare_(United_States) https://en.m.wikipedia.org/wiki/Medicare_(United_States) [2]https://en.m.wikipedia.org/wiki/Medicaid https://en.m.wikipedia.org/wiki/Medicaid
  - SQueeeeeL 5y ago
    I'm glad that the poor can get healthcare as long as they know enough trivia and minutiae of govt programs and can wade through bureaucracy. Clearly it's a working system and much better than universal healthcare
    - willcipriano 5y ago
      That's not my claim, just correcting a common misconception that apparently caused the OP emotional distress.
      - SQueeeeeL 5y ago
        Listing these programs in such a way essentially blames these people for not having healthcare. In reality, these programs barely accomplish their goals, because the mental overload of 1) being aware of their existence 2) knowing you're eligible and 3) fulfilling all the bureaucratic requirements makes the utility of these programs by the old, poor or young incredibly difficult.
        willcipriano 5y ago

grecy 5y ago

> Even without that drug I would be bankrupt if I had chosen a different career that afforded my family less coverage The knowledge that hundreds of millions of people in the richest country that has ever existed live like that sickens me. My Mum was diagnosed with stage four lung cancer. She had radiation, chemo, 4 different trail drugs and more pills and doctor visits than I ever want to remember over two and half years. Multiple multi-day stays in hospital and of course all the at-home care towards the end. It was horrible, and I wouldn't wish it on the worst person in the world. None of it cost a cent out of pocket, and my parents are both retired teachers (average middle class) with just normal public healthcare. Australia can figure this out but the USA can't? Feels more like doesn't want to.

mnouquet 5y ago
> Australia can figure this out but the USA can't? Feels more like doesn't want to. I went through the cost/revenue data from public Big Pharma companies a few years ago, long story short, the US prices are subsidizing the rest of the world's (ie. really only first world countries) "free" healthcare.
- grecy 5y ago
  > the US prices are subsidizing the rest of the world's (ie. really only first world countries) "free" healthcare. I hear that touted so often, and I've never seen a shred of evidence to support it. Also, if it's true - why aren't US citizens rioting in the streets about it? Surely they don't want their tax dollars paying for other countries to have more affordable healthcare than they do themselves! Just take away the profits of big pharma and health insurance companies in the US and let me know how much cheaper the entire thing would be.
  - mnouquet 5y ago
    > Just take away the profits of big pharma and health insurance companies in the US and let me know how much cheaper the entire thing would be. It would certainly be infinitely cheaper, yet, all that money would be diverted to funeral directors.
    - grecy 5y ago
      > It would certainly be infinitely cheaper, yet, all that money would be diverted to funeral directors Strangely enough in plenty of countries that money goes towards actually providing care for people, or in fact, the people just get to keep it for themselves because it's all so much cheaper. Your argument is like saying tons of people will be without internet if everyone uses much cheaper municipal broadband, despite the evidence proving otherwise.
      - mnouquet 5y ago
        The complexity of providing online connectivity is many several order of magnitude lower than solving complex multi-factorial health related problems, often with each case being unique, or affecting only a handful of people on earth. A better analogy would be to expect wired internet connectivity at the top of the Everest summit for $19.99/month with free installation fees. Even this would be orders of magnitude below the complexity of the rare disease treatments.
        grecy 5y ago
willcipriano 5y ago
> The knowledge that hundreds of millions of people in the richest country that has ever existed live like that sickens me. This should make you feel better. Poor kids with leukemia would get CHIP in the US[0]. Similarly depending on your mother's age she may qualify for Medicare[1] or if so sick that she had little to no income Medicaid[2], but since shes a retired teacher she likely would have a pension with a state provided healthcare plan. What is a problem is being lower middle class and having a chronic condition that is not disabling, too poor to afford insurance yet not poor enough for assistance. [0]https://en.m.wikipedia.org/wiki/Children%27s_Health_Insurance_Program https://en.m.wikipedia.org/wiki/Children%27s_Health_Insuranc... [1]https://en.m.wikipedia.org/wiki/Medicare_(United_States) https://en.m.wikipedia.org/wiki/Medicare_(United_States) [2]https://en.m.wikipedia.org/wiki/Medicaid https://en.m.wikipedia.org/wiki/Medicaid
- SQueeeeeL 5y ago
  I'm glad that the poor can get healthcare as long as they know enough trivia and minutiae of govt programs and can wade through bureaucracy. Clearly it's a working system and much better than universal healthcare
  - willcipriano 5y ago
    That's not my claim, just correcting a common misconception that apparently caused the OP emotional distress.
    - SQueeeeeL 5y ago
      Listing these programs in such a way essentially blames these people for not having healthcare. In reality, these programs barely accomplish their goals, because the mental overload of 1) being aware of their existence 2) knowing you're eligible and 3) fulfilling all the bureaucratic requirements makes the utility of these programs by the old, poor or young incredibly difficult.
      - willcipriano 5y ago