For Blood and Money: Billionaires, Biotech, an... - CLL Support

CLL Support

22,532 members38,709 posts

For Blood and Money: Billionaires, Biotech, and the Quest for a Blockbuster Drug -- interesting book

mdsp7 profile image
8 Replies

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.

Written by
mdsp7 profile image
mdsp7
To view profiles and participate in discussions please or .
Read more about...
8 Replies
Unglorious profile image
Unglorious

What did you learn? Will you going off of Acalabrutinib?

mdsp7 profile image
mdsp7 in reply to Unglorious

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.

Unglorious profile image
Unglorious in reply to mdsp7

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.

mdsp7 profile image
mdsp7 in reply to Unglorious

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.

Unglorious profile image
Unglorious in reply to mdsp7

Thank you for the clarification. Take care, be safe.

mdsp7 profile image
mdsp7 in reply to Unglorious

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.

bkoffman profile image
bkoffmanCLL CURE Hero

It's a great read. Was exited to have a walk on part in the book.

mdsp7 profile image
mdsp7

Because you contribute a lot of good to our community, I was cheered when your name came up in the book!

You may also like...

My CLL and CAR-T story

experienced blood cancer advocate and CML patient, you can watch here:...

My 1 year CAR-T anniversary and from ASH 2018, Dr. Siddiqi on how CLL treatment has changed.

in the peripheral blood- no CLL to be found. Read more here:...

So much to share returning from Scotland for CLLAN Horizon and iwCLL

speak and do interviews. Still jetlagged, but we have a backlog of news and interviews to share. In

Get my CAR-T cells tomorrow

experience and we are adding interviews and research on CAR-T (see:...

Combination therapy for our CLL

leukemia (CLL). You can read my summary and watch the interview here:...