Here is a link to cllsociety.org's article:
For Blood and Money: Billionaires, Biotech, and the Quest for a Blockbuster Drug: An Interview With the Author About the Development of Ibrutinib and Acalabrutinib
cllsociety.org/2023/04/for-...
I read the article then ordered and read the book. What a story! Yikes! I learned a lot.
What did you learn? Will you going off of Acalabrutinib?
I am not on any medicines, yet. I am still on watch and wait, and weirdly, getting better, not worse. But reading the book made me at least somewhat interested in joining a clinical trial.
I learned that the medicines are exhorbitantly expensive! And that they work well. That the money men funding the research are inspired by the idea that we can be expected to use their medicines at $91/pill*4 pills/day for the rest of our lives. (What are they thinking?) That many of the scientists were just trying to save people's lives but that they too sometimes got caught up in the need for millions in stock options, they didn't like doing all the thinking and work on the science and watching the money men waltz off with billions (!). That things are more complicated than they seem. But that it is fabulous that now there are medicines can work amazingly well. Etc.
Read it.
Thanks for your response.
All I know is that I rely on Acalabrutinib to aid me in my battle. I hope and pray that anyone who cannot afford to be on the medication will be able to get some sort of support from the pharmaceutical companies to be able to obtain their medication. I for one went from not even being aware that I had CLL to being diagnosed with CLL and to being on treatment Retaxamab/Fludarabine way back 2017. Then I went from Ibrutinib to Acalabrutinib. I don't think that I have the proper frame of mind to be agitated and upset about what this book discloses.
Wishing you continued good health and may win the battle.
Don't worry, most of the book is a description of the very real issues involved in organizing an effort on a gargantuan scale in order to have a drug developed and tested properly. Even the rich men are not scoundrels. It's just not my way of thinking so it struck me. You find yourself rooting for them all.
But I really did not realize how expensive these drugs are. It made me wonder whether my health plan would pay for them for me. I am unmutated.
Thank you for the clarification. Take care, be safe.
I want to send out an apology here: I'm always chiming in on how you others should get the Paul Pitchford book, try the anti-cancer diet like I did, I'm still on watch and wait after 15 years, etc. etc. I must have almost seemed to be bragging, though I meant to be helping. I hadn't reflected on how this unsolicited advice might feel to others who are really at their wits end and suffering while also doing their best. And I feel really bad now for having been insensitive and naive.
Reading this book on the development of the drugs really drove this home to me.
Also, I especially liked the acalabrutinib story, I really cheered for that team.
Thank you for your good wishes.
It's a great read. Was exited to have a walk on part in the book.
Because you contribute a lot of good to our community, I was cheered when your name came up in the book!
I just read the book and found the development of BTKi from a business perspective both fascinating and alarming. It’s pretty well written and definitely worth a read. I’m also partial, because my doctor is discussed and he comes out looking good. 😊
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