I have more good news. My dad has inoperable, untreatable brain cancer. He's part of a clinical trial for a new cancer drug. His initial prognosis was 1 year left. That was 6 years ago. This drug is going to revolutionize cancer treatment. Science is amazing
Unfortunately there's a lot of legality involved in early stage clinical trials because of proprietary information. I did send that person a message with some breadcrumbs to give them a starting point. I truly wish I could share it but I would be putting my dad's treatment and even the whole trial at risk if I said more
It’s kind of interesting because a lot of cancer trials are taking longer now, but it’s specifically because therapies have become more effective and it takes longer before you accrue enough events (usually deaths) to know if the new therapy is more effective.
I know it's kind of maddening but it's to make sure that drugs have good bodies of evidence. We need to be confident we aren't causing huge side effects or long term effects. Especially if it's a first in human drug or new drug class. Hopefully it will be available soon!
Fortunately people with serious conditions that are deemed terminal can potentially get access to drugs currently in trial . One thing Trump did was pass a law back in like 2018 or something allowing this (essentially making it okay for companies to Provide those drugs in some circumstances if it could potentially help. Some companies have compassionate use programs where they triage these requests , cross check with FDA medical safety and use ethics boards in some cases and provide the drugs for free (not always and some companies don’t even respond which was in the news a year after the law when one of the citizens used as an example still hadn’t gotten access). Small steps in the right direction tho.
If I ever win the lotto, I’d like to
create a non-profit that would help patients with those requests along with their physicians but also help facilitate getting the drugs from the companies as quick and efficiently as possible (super hard and obvy $$ is involved) but I’m hopeful we’ll see more progress in this and the overall oncology space
Compassionate use programmes actually started way earlier - in response to the HIV/AIDS pandemic (well, more accurately in response to groups like ACT UP! raising hell during the pandemic, angling for seats where decisions were being made, and advocating for access o experimental therapies back when there was no known effective treatment). Those people were and are absolute heroes.
We're actually Canadian, we just got lucky that my dad's new ( well new at the time) oncologist knew the scientist leading the trial in the US so he got him in. The funny part was he's very young and when my dad's old oncologist retired and he got this guy my mom was furious and then he turned out to save his life
If u look into the history of clinical trials, it’s because of prior “treatments” for cancer that wound up actually not being beneficial at all. The current landscape of using real world evidence and data will help improve things but we’re where we’re at today because of improvements in process to ensure we’re actually doing good vs potentially causing some harm down the line. Lots of variables as well which is why large groups and separate studies are needed
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u/Lessllama Jan 01 '25
I have more good news. My dad has inoperable, untreatable brain cancer. He's part of a clinical trial for a new cancer drug. His initial prognosis was 1 year left. That was 6 years ago. This drug is going to revolutionize cancer treatment. Science is amazing