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My wife has several family members with CF. They have started on trifekta and it has changed their lives radically to the point the disease barely effects them

My wife has several family members with CF. They have started on trifekta and it has changed their lives radically to the point the disease barely effects them day to day. It truly is a miracle and a breakthrough, and the only shame is that these brave pioneers are only getting $3 million for their heroic efforts. Meanwhile the actual cost of the medicine is $10k a dose.

bdcravens 3y ago
The pricing is more like $25-30K/month. It's taken twice a day, in pill form. (I have CF and take Trikafta)
- squeaky-clean 3y ago
  Please tell me insurance pays for most of that?
  - bdcravens 3y ago
    Of course :-) Vertex's copay assistance is also very generous, even for those with high income. I have a good developer income, and pay essentially nothing.
    - trollian 3y ago
      Not having to deal with insurance & copay shenanigans for my daughter's CF meds is one of the things that keeps me at the large tech company I work at...
    - amluto 3y ago
      I personally consider copay assistance to be essentially fraudulent as a concept. The drug company is literally paying the patient to invoke an insurance benefit that kicks a bunch of money to the drug company. I imagine that when an auto body shop pays their customers’ deductibles, it is fraud, legally and ethically.
  - Aurornis 3y ago
    Nobody actually pays those sky-high drug prices themselves. It’s a scheme to extract as much money as possible from insurers. Companies often have programs that provide the drug free of charge (or at a nominal price) to people without insurance. They might also have “copay assistance” programs where they reimburse patients for their copay to bring the out of pocket costs down. The goal is to maximize the amount billed to insurance companies. They’ll go out of their way to reduce the amount billed to the patient directly, because that results in more patients signing up and enabling them to bill more insurance companies. It’s not a good system, but it’s how things work right now. Nobody pays that $100-300K price themselves. Well, we all do through higher insurance costs.
    - koolba 3y ago
      > Nobody actually pays those sky-high drug prices themselves. It’s a scheme to extract as much money as possible from insurers. Alternatively, we all pay those sky high prices. It’s baked into our premiums.
      - hackernewds 3y ago
        while employed Premiums = $0. while unemployed, premiums = $3600/year for $0 deductibles for private insurance. would you rather pay 10% of your income in higher taxes like so-called universal healthcare providing countries maintain?
        viciousvoxel 3y ago
        Yes, personally. Instead of my employer paying for my healthcare (and that being factored into base salary), I would rather receive that money as salary and pay higher taxes. The idea of employers paying for health insurance in the US only came about in the first half of the last century as a way for companies to attract employees without having to raise/compete on salary.
        verall 3y ago
        Can you give me a link or reference to this incredible $3600/year for $0 deductables insurance? That's cheaper than I pay with my employer covering most of my healthcare. That could be literally lifesaving for friends of mine who currently have to choose between paying about $800/month for insurance with deductables or going without.
yread 3y ago
There is one major reason for high costs, Vertex needs to recoup high licensing costs that they paid to .... drumroll.... The CF "Foundation" https://www.cff.org/about-us/our-history https://www.cff.org/about-us/our-history > 2014: The CF Foundation sells royalty rights for CF treatments developed by Vertex for $3.3 billion – bringing resources to the fight against CF never thought possible CFF funded the original research https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3219147/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3219147/ and then made the drug unavailable to most patients. How do these people sleep at night?
- cowsandmilk 3y ago
  > high licensing costs that they paid to .... drumroll.... The CF "Foundation" What are you talking about? The CFF invested in the research being done at Vertex and then sold their shares in the investment. There are no licensing fees. > made the drug unavailable to most patients Where’s the data showing the majority of CF patients aren’t receiving Kalydeco or Trifekta?
  - refurb 3y ago
    Outside of the US access to Kalydeco and Trifekta is quite limited. Last I checked only 8 of 13 provinces/territories in Canada pay for it, and only for children and adolescents - adults are excluded. The UK also refused to pay for it but I think that was resolved? Been a while since I checked.
    - jamesblonde 3y ago
      They pay now
  - yread 3y ago
    > CFF invested in the research being done at Vertex and then sold their shares in the investment Maybe they should just rebrand to CF Investment Fund then. I thought it's a charity with a mission of improving the lives of CF patients not an investment vehicle that happens to invest into compounds around CF. I hope the patients who contributed to the charity and now can't afford the drug are happy with the rate of returns

bdcravens 3y ago

The pricing is more like $25-30K/month. It's taken twice a day, in pill form. (I have CF and take Trikafta)

squeaky-clean 3y ago
Please tell me insurance pays for most of that?
- bdcravens 3y ago
  Of course :-) Vertex's copay assistance is also very generous, even for those with high income. I have a good developer income, and pay essentially nothing.
  - trollian 3y ago
    Not having to deal with insurance & copay shenanigans for my daughter's CF meds is one of the things that keeps me at the large tech company I work at...
  - amluto 3y ago
    I personally consider copay assistance to be essentially fraudulent as a concept. The drug company is literally paying the patient to invoke an insurance benefit that kicks a bunch of money to the drug company. I imagine that when an auto body shop pays their customers’ deductibles, it is fraud, legally and ethically.
- Aurornis 3y ago
  Nobody actually pays those sky-high drug prices themselves. It’s a scheme to extract as much money as possible from insurers. Companies often have programs that provide the drug free of charge (or at a nominal price) to people without insurance. They might also have “copay assistance” programs where they reimburse patients for their copay to bring the out of pocket costs down. The goal is to maximize the amount billed to insurance companies. They’ll go out of their way to reduce the amount billed to the patient directly, because that results in more patients signing up and enabling them to bill more insurance companies. It’s not a good system, but it’s how things work right now. Nobody pays that $100-300K price themselves. Well, we all do through higher insurance costs.
  - koolba 3y ago
    > Nobody actually pays those sky-high drug prices themselves. It’s a scheme to extract as much money as possible from insurers. Alternatively, we all pay those sky high prices. It’s baked into our premiums.
    - hackernewds 3y ago
      while employed Premiums = $0. while unemployed, premiums = $3600/year for $0 deductibles for private insurance. would you rather pay 10% of your income in higher taxes like so-called universal healthcare providing countries maintain?
      - viciousvoxel 3y ago
        Yes, personally. Instead of my employer paying for my healthcare (and that being factored into base salary), I would rather receive that money as salary and pay higher taxes. The idea of employers paying for health insurance in the US only came about in the first half of the last century as a way for companies to attract employees without having to raise/compete on salary.
      - verall 3y ago
        Can you give me a link or reference to this incredible $3600/year for $0 deductables insurance? That's cheaper than I pay with my employer covering most of my healthcare. That could be literally lifesaving for friends of mine who currently have to choose between paying about $800/month for insurance with deductables or going without.

yread 3y ago

There is one major reason for high costs, Vertex needs to recoup high licensing costs that they paid to .... drumroll.... The CF "Foundation" https://www.cff.org/about-us/our-history https://www.cff.org/about-us/our-history > 2014: The CF Foundation sells royalty rights for CF treatments developed by Vertex for $3.3 billion – bringing resources to the fight against CF never thought possible CFF funded the original research https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3219147/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3219147/ and then made the drug unavailable to most patients. How do these people sleep at night?

cowsandmilk 3y ago
> high licensing costs that they paid to .... drumroll.... The CF "Foundation" What are you talking about? The CFF invested in the research being done at Vertex and then sold their shares in the investment. There are no licensing fees. > made the drug unavailable to most patients Where’s the data showing the majority of CF patients aren’t receiving Kalydeco or Trifekta?
- refurb 3y ago
  Outside of the US access to Kalydeco and Trifekta is quite limited. Last I checked only 8 of 13 provinces/territories in Canada pay for it, and only for children and adolescents - adults are excluded. The UK also refused to pay for it but I think that was resolved? Been a while since I checked.
  - jamesblonde 3y ago
    They pay now
- yread 3y ago
  > CFF invested in the research being done at Vertex and then sold their shares in the investment Maybe they should just rebrand to CF Investment Fund then. I thought it's a charity with a mission of improving the lives of CF patients not an investment vehicle that happens to invest into compounds around CF. I hope the patients who contributed to the charity and now can't afford the drug are happy with the rate of returns