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Comment by opportune | Hacker News Reader

A close family member has stage 4 cancer.

Even if the absolute death rates for some cancers are relatively unchanged, one of the amazing things I’ve observed is that medical advances have increased the long term survival rates of terminal/metastaticized cancers. It’s partially due to the development of various drugs that have been identified as effective against various specific mutations. Even if the cancer is incurable with existing technology, they can extend lives by years, which is nothing to sneeze at. Especially considering many people get diagnosed with cancer once they are elderly already, it can mean the difference between dying directly of cancer and living long enough to die of something else - ie the cancer becomes something more like a chronic condition than it does a direct threat (for a period of time).

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One of the interesting developments is precision medicine: we can now use genomic sequencing and AI to "search" for the treatment that is most likely to be effective against a particular individual's cancer rather than following the rough "standard of care" playbook (for example, depending on the type of cancer, the standard of care might be 6 months of chemo, and if that doesn't work try something else, repeat until cancer goes away or patient dies). The precision medicine approach at this point seems to be among the things that we try if the standard of care doesn't work, but hopefully one day it will be step one (chemo sucks and it is an expensive use of precious time). In addition to searching for treatments, we can also search for clinical trials for which a patient is a good fit--this helps both the research side (it's very hard to find qualified patients) and possibly patients who don't have better options (and of course the research itself benefits future cancer patients).

> repeat until cancer goes away or patient dies

This sounds very similar to participating in a clinical trial and to me ironically seems to be the opposite of precision medicine.

The Nagourney Cancer Institute cultures live cancer cells from the patient to test for what drugs may work. Doesn't work for everyone, but seems more in line with precision. Whereas genomic sequencing hasn't produced the amazing results that were expected.

> This sounds very similar to participating in a clinical trial and to me ironically seems to be the opposite of precision medicine.

yes, to be clear this is a description of "standard of care" in which oncologists follow a playbook based on the type of cancer. Precision medicine (as I, a lay person, understand it) involves picking a treatment that is very likely to work based on an individual's genes, the genes of their tumor, their past medical history, and other relevant factors. The idea is to use all available information to identify the treatment that is the most likely to succeed for that individual.

> The Nagourney Cancer Institute cultures live cancer cells from the patient to test for what drugs may work.

That assumes you have time for this. Very often treatment is started within days or even hours of diagnosis.

This sounds like something insurance will either refuse to cover for being expensive or make you try 5 other approaches first before agreeing to cover it, at which point it'll probably be too late.

To the extent this is true today, I suspect it's precisely because the precision medicine approach is not yet the standard. I.e., insurance companies want you to do the standard of care, but if/when precision medicine _becomes_ the standard then insurance companies will embrace it (or that's my hypothesis, anyway).

This is partly why it’s important to save for retirement so you can be well capitalized to fund such treatments on your own if they should become necessary.

Small consolation, but I believe GINA should prevent that behavior. https://www.hhs.gov/hipaa/for-professionals/special-topics/g...

Unlikely. It will rule out treatments that are unlikely to work, saving money. What we are seeing is Simpson’s paradox. Genomics and precision medicine allow you to segment populations at a higher resolution then before.

It may rule them out. But many standard-of-care chemo drugs are quite cheap.

When I had leukemia, my first rounds of chemo used cheap drugs. (The drugs were far cheaper than the daily hospitalization costs, which was required due to drugs obliterating the immune system.) The insurance company didn't require any oversight into the process.

But once the chemo stopped working and a much more expensive treatment was needed, the insurance company became quite a pest. I'm fortunate have saved a lot of money, so I didn't delay treatment until insurance approved it. (The 2-3 weeks between treatment starting and the final approval from insurance may have actually made a difference between life-and-death when dealing with aggressive leukemia.)

I’m glad you’re here and a survivor of that hell. Yes, what you are describing is a very real problem. It’s something we need congressional action on. Call it a surprise medical bill but more rather a surprise insurance denial. I am no stranger to insurance battles…

I actually should have put it differently. Precision medicine will bring new treatments to the standard of care because we will be able to find the correct drug for you or me.

Exactly. Insurance companies are very interested in Real World Data (RWD) around genomic based treatments. By using those data they can have a better sense of which patients would be likely to respond to which drugs, and steer treatment that way.

There another reason for genomic tests they also rule out the need for treatment. Either the tumor is benign or very low grade cancer.

How much will a bit of sequencing and CPU time cost? 5k what genomic sequencing for other cancers cost is peanuts in cancer care. There are many drugs where one infusion (of many needed) is more expensive than that.

Figuring out the costs, and who's going to pay for it is one thing, and it's serious - I hope we find solutions there. But, in terms of being gamechangers, my hope is in 10-20 years we will be able to identify genes causing cancer mutations and use CRISPR to edit them out. All this will need massive breakthroughs in leveraging AI , ML and Big Data. Hope we can put an end to Cancer this century at the latest, would prefer it sooner in my lifetime, but I know this is our (humans) ultimate rival /enemy in the game of Life.

I'm in a similar situation. Partially have self-serving hope, but agreed that the game is starting to shift. The goal is now to buy enough time with the current drug you can move to the next version. So if you get 3 years from the drug and new ones come out every 2, you might get to die of something else.

Also aggregated death rates will always lag if treatments are improving.

Yep, its all about staying ahead of the curve

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