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The one-year anniversary of my total glossectomy

jakeseliger.com

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Re: The one-year anniversary of my total glossectomy

#51

Post by BurningFrog »

A_D_E_P_T wrote: post #43
citizenpaul wrote: post #40

Earlier quoted context omitted.

It seems to me trying to look at it objectively. The FDA is in an impossible situation forever. If they delay drugs they are bureaucratic and indifferent. Filling graveyards, as said. If they release drugs too fast/unproven then they open the gates to scammers, unethical companies trying to sneak ineffective products they spent too much on, ect. Basically the whole reason the FDA was formed would be in question. Then…

The FDA's position is that it's better for 10,000 patients to die of neglect than have 1 patient die of quackery. Drug development takes 12 years [1] and costs >$2B (on average) because the FDA requires >99.99% confidence that pharmaceutical companies are not selling quack cures. Do we need that level of confidence? Especially for cancer, is that degree of confidence warranted? Is the process efficient? I think that…

I agree, but I it's important to understand why.

If/when someone dies of something FDA approved, it becomes a big scandal. Heads might roll, funding constrained.

If 10,000 people die from something that an unapproved treatment could cure, it's not news at all. People have always been from that.

FDA, like any organization, responds to incentives and does what's best for it.

Re: The one-year anniversary of my total glossectomy

#52

Post by citizenpaul »

WhitneyLand wrote: post #46
A_D_E_P_T wrote: post #43

Earlier quoted context omitted.

The FDA's position is that it's better for 10,000 patients to die of neglect than have 1 patient die of quackery. Drug development takes 12 years [1] and costs >$2B (on average) because the FDA requires >99.99% confidence that pharmaceutical companies are not selling quack cures. Do we need that level of confidence? Especially for cancer, is that degree of confidence warranted? Is the process efficient? I think that…

I can’t see that this is true at all. I don’t believe the FDA has any such quantitative constraint on approvals. The guidelines are strict, but each is evaluated individually. There’s no such quota for how many drugs are approved, how many people can die, to say this is the FDAs position is not true. Is something more desperately needed and deserved by people who re suffering? Of course yes, things should be better.…

Unfortunately this is one of those subjects that turns off people's brain and turns on their emotions. It's disappointing to see so many HN'ers with their pitchforks out on this topic.

All the people on here with advanced degrees got them to kill orphans with drones right? Just like all the doctors they are accusing of killing people went to med school so they could kill people indirectly though policy.

The entire reason the FDA exists is that there is only a tiny sliver of people that can offer any real medical help to a dying person. Yet there are endless streams of con artists that will enthusiastically take the money of a desperate dying person because its easy. Shut off brain forgets that.

Based on my experience the actual solution is greatly expanding the FDA to allow them to be able to handle the highly increased flow of new research and create a central point for dying patients to find and get in programs. Right now they don't have the resources and have to rely on strict bureaucracy. Again the idea that the overwhelming majority of doctors would not jump at the chance to save people rather than put them in the ground slower is absurd.

The FDA needs overhauled so start contacting your senators is pretty much all we can do.

Re: The one-year anniversary of my total glossectomy

#53

Post by A_D_E_P_T »

citizenpaul wrote: post #52
WhitneyLand wrote: post #46

Earlier quoted context omitted.

I can’t see that this is true at all. I don’t believe the FDA has any such quantitative constraint on approvals. The guidelines are strict, but each is evaluated individually. There’s no such quota for how many drugs are approved, how many people can die, to say this is the FDAs position is not true. Is something more desperately needed and deserved by people who re suffering? Of course yes, things should be better.…

Unfortunately this is one of those subjects that turns off people's brain and turns on their emotions. It's disappointing to see so many HN'ers with their pitchforks out on this topic. All the people on here with advanced degrees got them to kill orphans with drones right? Just like all the doctors they are accusing of killing people went to med school so they could kill people indirectly though policy. The entire re…

I don't think you understand how the process works.

The FDA's job isn't to hold your hand and get you into scientific research studies.

The FDA mandates certain steps -- the collection of certain data -- before it allows drugs to be marketed. Phase 1 is a safety study, Phase 2 is an efficacy study, and Phase 3 is a broader efficacy study. It is on the companies to collect this data; the FDA merely reviews it. (And then reddit-votes on which drugs to approve, with results that are sometimes funny, sometimes nakedly unethical e.g. flibanserin, and sometimes just ridiculous e.g. aducanumab.)

Having more FDA employees would not speed-up the process by much, as the data collection itself is the arduous bit, nor would it reduce expenses at all.

The best possible thing to do would be to simply get rid of Phases 2 & 3. That's how they did things until the early 1960s -- and, lest we forget, the 40s-60s were known as "the Golden Age" of drug development. Instead of increasingly onerous and expensive trials, allow drugs to be marketed once they're proven safe, and subject them to mandatory postmarketing surveillance.

Besides, that hard-won efficacy data is often interpreted (by the FDA!) in subjective and bizarre ways, so its value is not awfully high. It's not worth the price society is paying for it.

Re: The one-year anniversary of my total glossectomy

#54

Post by cactusfrog »

yahoobing wrote: post #20

One thing I get from this is you need to be really on the ball when you are this sick. Make hard decisions, do tonnes of research and so on. It is probably important to have support people who can “Karen” for the need of a better word the medical and insurance system when it isn’t working. Probably could be a job in itself. Probably is. The follow on is it helps to be wealthy before you get sick.

The Mayo Clinic sounds like a garbage healthcare provider.

Re: The one-year anniversary of my total glossectomy

#55

Post by Ancapistani »

yahoobing wrote: post #20

One thing I get from this is you need to be really on the ball when you are this sick. Make hard decisions, do tonnes of research and so on. It is probably important to have support people who can “Karen” for the need of a better word the medical and insurance system when it isn’t working. Probably could be a job in itself. Probably is. The follow on is it helps to be wealthy before you get sick.

> have support people who can “Karen” for the need of a better word the medical and insurance system

Yep - that's called a "patient advocate". I learned about it when I was in my teens, and went with my grandfather to the VA hospital on a regular basis.

Multiple times I had to remind the healthcare providers that he had long-standing kidney issues, that contrasting agents had caused immediate and significant reductions in kidney function in the past, and that as a result we should consider why such tests were ordered and what benefit the results would provide.

I 100% believe they would have unintentionally killed him years early if I hadn't been there to question them and push back.

Re: The one-year anniversary of my total glossectomy

#56

Post by epmatsw »

mdorazio wrote: post #36
rblatz wrote: post #31

Earlier quoted context omitted.

Do you have to be over 50 to take it?

Looks like no, but you're more likely to have to go the online provider route which is $950. https://www.galleri.com/patient/the-galleri-test

They're running discounts lately, my dr's office had $200 off for anyone that wanted it and they have regular sales every couple of months it seems.

Re: The one-year anniversary of my total glossectomy

#58

Post by lofayo »

kelnos wrote: post #28
jseliger wrote: post #11

Earlier quoted context omitted.

Thank you! I wish I felt strong; I had a friend from high school visiting this weekend, and he said that my strength is inspirational. I looked around wondering if he was talking to someone else, but in fact I was the only person in the room.

This makes me think about the saying about how being brave doesn't mean not being scared, it means pushing through the fear and doing what has to be done anyway. I feel like it's similar to your strength. From your writing I gather you've had more than your share of bad days, emotionally, during this ordeal. But you're still here, still writing, still posting here, talking to random strangers on the internet. And you…

Recently, i keep reading the book of 'Pratical Mindfulness', i have learnt it that you are you not your thought, thus, if you feel fear, it maybe just a emotion, just your feeling, not the facts
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