3 ms·

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.o

by 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
vibrio 3y ago
The drugs may have never been developed without the CFF. They arguably took more financial risk than vertex. Vertex was trying to be a hepatitis c company at the time and cf was an off focus program that happened to come with an acquisition. With out CFF funding my guess is the program would have been cut. The fact that the nonprofit got a royalty stream from their significant financial investments is good practice. The drugs are expensive, but how much is a patients life with? How much money does stopping progression save the healthcare system financially? Aside from giving the patients more normal and longer life, persistent and repeated hospitalizations and lung tra transplants are very costly and poorly effective. This is an example of transformative Medicne. Our society needs should prioritize such work.

by yread 3y ago

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

vibrio 3y ago

The drugs may have never been developed without the CFF. They arguably took more financial risk than vertex. Vertex was trying to be a hepatitis c company at the time and cf was an off focus program that happened to come with an acquisition. With out CFF funding my guess is the program would have been cut. The fact that the nonprofit got a royalty stream from their significant financial investments is good practice. The drugs are expensive, but how much is a patients life with? How much money does stopping progression save the healthcare system financially? Aside from giving the patients more normal and longer life, persistent and repeated hospitalizations and lung tra transplants are very costly and poorly effective. This is an example of transformative Medicne. Our society needs should prioritize such work.