4 ms·

It's not a cure and I think the idea is more like "It's an extremely expensive disease and a tiny number of people get it and if it weren't a predominantly Cauc

It's not a cure and I think the idea is more like "It's an extremely expensive disease and a tiny number of people get it and if it weren't a predominantly Caucasian disorder, no one would be okay with spending this kind of money on it."

JumpCrisscross 3y ago
> if it weren't a predominantly Caucasian disorder, no one would be okay with spending this kind of money on it It has nothing to do with race and everything with money. When ebola came to America, we didn’t find a vaccine because it was infecting white people. We funded it because it was impacting Americans.
- DoreenMichele 3y ago
  That's not going to stop some people from saying "The white people are throwing money at this because it's a Caucasian condition." Historically, male diseases got studied more than female diseases, probably having nothing to do with sexism per se. Most physicians and researchers were male, so they were interested in things relevant to their lives. But that doesn't stop people from crying "Sexism!" about it.
  - JumpCrisscross 3y ago
    > not going to stop some people from saying "The white people are throwing money at this because it's a Caucasian condition." Some people will always say wrong things. I’ve found it helpful to focus on those who are speaking truthfully, and seeing if I can amplify or even help them.
    - DoreenMichele 3y ago
      It's not necessarily entirely wrong. Celine Dion is an advocate for the condition because one or more of her relatives had the condition (and died young from it). "Coincidentally," she's white. Celebrities somewhat often advocate for a condition they or a relative have. If it has a genetic component associated with a particular ethnicity, well, you are going to find people of that ethnicity advocating for it. So it's not outright crazy talk to say the condition gets the amount of funding it gets because it's a Caucasian disorder. It's unfortunate that it can potentially be spun as some form of racism. I long ago concluded that as someone with a form of CF, my "white privilege" includes a lifetime of suffering that most people will happily discount when hating on white people for historic racism. We fight over an offence we did not give against those who were not alive to be offended. -- Kingdom of Heaven And in Take the Lead the main character says something like "Even if you can find someone to blame, it doesn't fix the problem." Hating on whites doesn't fix the problem. Maybe someday we can find some other reaction to history and our unhappiness with it and our desire to have a future unlike our often ugly past.
      - Gibbon1 3y ago
        One could point out that while funding often depends on social-political factors including age, sex, gender, and race. It's not necessarily a zero sum game either. Not to mention knowlege and technology used to defeat one disease often has applications to other. Just the fact that Trikafta works probably will spur efforts to do something similar to sickle cell.
  - Gibbon1 3y ago
    I did a quick search. Sickle cell disease, effects 1 in 365, 90,000 suffers. Federal Funding $812. Foundations $102 Cystic Fibrosis, effects 1 in 2500, 30,000 suffers. Federal Funding $2807. Foundations $7690 https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2763606 https://jamanetwork.com/journals/jamanetworkopen/fullarticle...

JumpCrisscross 3y ago

> if it weren't a predominantly Caucasian disorder, no one would be okay with spending this kind of money on it It has nothing to do with race and everything with money. When ebola came to America, we didn’t find a vaccine because it was infecting white people. We funded it because it was impacting Americans.

DoreenMichele 3y ago
That's not going to stop some people from saying "The white people are throwing money at this because it's a Caucasian condition." Historically, male diseases got studied more than female diseases, probably having nothing to do with sexism per se. Most physicians and researchers were male, so they were interested in things relevant to their lives. But that doesn't stop people from crying "Sexism!" about it.
- JumpCrisscross 3y ago
  > not going to stop some people from saying "The white people are throwing money at this because it's a Caucasian condition." Some people will always say wrong things. I’ve found it helpful to focus on those who are speaking truthfully, and seeing if I can amplify or even help them.
  - DoreenMichele 3y ago
    It's not necessarily entirely wrong. Celine Dion is an advocate for the condition because one or more of her relatives had the condition (and died young from it). "Coincidentally," she's white. Celebrities somewhat often advocate for a condition they or a relative have. If it has a genetic component associated with a particular ethnicity, well, you are going to find people of that ethnicity advocating for it. So it's not outright crazy talk to say the condition gets the amount of funding it gets because it's a Caucasian disorder. It's unfortunate that it can potentially be spun as some form of racism. I long ago concluded that as someone with a form of CF, my "white privilege" includes a lifetime of suffering that most people will happily discount when hating on white people for historic racism. We fight over an offence we did not give against those who were not alive to be offended. -- Kingdom of Heaven And in Take the Lead the main character says something like "Even if you can find someone to blame, it doesn't fix the problem." Hating on whites doesn't fix the problem. Maybe someday we can find some other reaction to history and our unhappiness with it and our desire to have a future unlike our often ugly past.
    - Gibbon1 3y ago
      One could point out that while funding often depends on social-political factors including age, sex, gender, and race. It's not necessarily a zero sum game either. Not to mention knowlege and technology used to defeat one disease often has applications to other. Just the fact that Trikafta works probably will spur efforts to do something similar to sickle cell.
- Gibbon1 3y ago
  I did a quick search. Sickle cell disease, effects 1 in 365, 90,000 suffers. Federal Funding $812. Foundations $102 Cystic Fibrosis, effects 1 in 2500, 30,000 suffers. Federal Funding $2807. Foundations $7690 https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2763606 https://jamanetwork.com/journals/jamanetworkopen/fullarticle...