Something you might not know: While my current oncologist has a direct line to NIH, when I was first diagnosed, my then oncologist relied on public NIH communications to learn about the latest treatments & plead the case to insurance. Even a few weeks' delay can be calamity for cancer patients. - ThreadSky

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hedonistic-demeter.bsky.social • 27 days ago

Something you might not know: While my current oncologist has a direct line to NIH, when I was first diagnosed, my then oncologist relied on public NIH communications to learn about the latest treatments & plead the case to insurance. Even a few weeks' delay can be calamity for cancer patients.

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hedonistic-demeter.bsky.social•27 days ago

My first course of treatment had been approved just 2 months before and had 2x the success rate compared to any others at that time. If it had been delayed a few weeks, I would have been put on a much less effective treatment and wouldn't be as healthy as I am today (or could be dead).

amberchicago.bsky.social•27 days ago

I hate that you know this from experience. Thank you for sharing.

hedonistic-demeter.bsky.social•27 days ago

Thanks for your empathy. Most days, there's at least a few moments of rage (thanks, mutant genes!). On better days, there's also gratitude. It's been 5 years since diagnosis: If I'd gotten sick 10 years earlier, I'd probably be dead by now because the treatments (all found by NIH) are that new.

jensantarelli.bsky.social•27 days ago

The news about NIH & WHO this week had me worried, but I didn’t know that doctors worked with them directly to this degree. Thank you for posting about this! *hugs*

hedonistic-demeter.bsky.social•27 days ago

I didn't know either, pre- cancer. For rare cancers like mine (HLRCC), NIH is pretty much the only org doing the research.

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