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July 18, 2016 at 7:41 pm #22929Catherine PooleKeymasterJuly 18, 2016 at 11:30 pm #69304
Many thanks, Catherine. As you know, I will always be grateful for your help and support throughout my 20 year journey, along with that of MIF members. That support has always been critical, practically and emotionally.
JonathanJuly 19, 2016 at 4:15 pm #69305AnonymousGuest
Outstanding article Jonathan. What a journey!
JeffJuly 19, 2016 at 4:39 pm #69306TreeFrogParticipant
This is a simply wonderful article, Jonathan. There is no doubt that you have already contributed to the improvement of the US health-care system. Your contributions to this forum, as well, have helped many people both with practical advice and with hope. Thank you so much for sharing your unique insights with as many as possible.
~WendyJuly 19, 2016 at 7:22 pm #69307
Thanks Wendy and Jeff, so good to hear from you.
Last year, when it became clear to me that I was going to survive and live normally, a friend (artist, writer, and cartoonist) told me I should write about it all. It took a very long time, and had lots of separate parts (prices, clinical trials, personal), but I’m pleased it’s getting a good reaction and attention. I liked the “comments” section responses.
I hope it reinforces a couple of major points –
1) more competition has to be introduced into drug pricing (we can all support that), and
2) people who are currently excluded from clinical trials should still be allowed access to promising experimental drugs under FDA monitoring (their data can also still be very useful in the general clinical situation).
I’ve read the “Right To Try” legislation carefully, as well as its critics, and while the effort is clearly causing the FDA to speed up and simplify “expanded access” programs (and to introduce “breakthrough therapy” designations), I can’t totally buy into their proposed legislation, that’s sweeping the country at present. I think experimental drugs still have to be monitored by the FDA (but faster and simpler). If any drug that passes phase I trials for safety is prescribable (including those that subsequently fail phase 2 or phase 3), it opens the door for the quacks to go crazy. I’m thinking laetrile as a perfectly “safe” piece of quackery. I recall 70,000 breast cancer patients took it. Another thing about the RTT legislation is “who is gonna pay??” It isn’t mentioned, and of course, that’s huge. If the drugs were going to be free, that would be best (reducing the quack’s incentive, and not driving sick people and their families bankrupt). We’ll see what happens where it’s been approved – about 20 states now, I believe. My state, Connecticut, just passed one version.
Anyway, that’s my soapbox rant for now. It is pretty amazing how things are developing.July 20, 2016 at 4:07 am #69308msue5Participant
Great article Jonathan. You are an inspiration to all and give the rest of us hope that we will follow in your footsteps. I am so grateful to the patients who participate in clinical trials so the rest of us can benefit from your efforts.
Mary SueJuly 21, 2016 at 3:20 pm #69309goldfidlerParticipant
I echo the comments made by many others.
– Great article. Thank you for sharing your story so others can benefit from the learnings from your journey. I know I shared this with many friends and family, as it underscores some of the details that we go through on a daily basis.
– You are an inspiration to me and many others. From Day 1 on MIF, I have gained knowledge, support, and guidance from your posts. Thank you. It is people like you who help to make this site a great resource for others.
– Clinical trials and faster approvals are really the key to providing solutions. Many of the current Stage IV on this site actually started at Stage III. However, the Stage III group does not have access to many of the therapy options. But when it metastasizes and someone becomes Stage IV, it is sometimes too late. Hopefully, some of the new legislation and FDA process changes will yield some benefits to all stages.
MJuly 21, 2016 at 10:32 pm #69310
Again, I appreciate all this.
Also, I forgot, in the last message, to say what I’d really like to see changed in clinical trials/access to experimental drugs (I thought I said it, besides the payment stuff).
I think, probably in stage II trials, when there begins to be a sense that a new drug might not only be safe but effective, it should be made available to critically ill patients with no further recourse, who have been excluded by trial guidelines (this happened to me twice – first because, like so many men my age, I had a prostate biopsy, and second, when I wanted to get on an anti-PD1 trial, because I’d already had Ipi). Both of these exclusions meant large numbers of patients (like me) who were going to be among the first who needed the newly approved drug were excluded, and information on their reactions needed to be monitored before approval, to find out if there was any reason to think they might be different – not after approval. This would be a far more useful side-arm of the “pure” trial, and of course, far more compassionate. This would still mean effective FDA monitoring and data-gathering, rather than a helter-skelter opening up of the experimental drug to critically ill patients, and would also rationalize why the drug should be distributed for free, still under the expanded trial umbrella.
I haven’t seen this idea out there, but I think it’s a better alternative to RTT legislation, both ethically and scientifically.
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