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Cystic fibrosis breakthrough has given patients a chance to live longer

theatlantic.com

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Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#141

Post by dennis_jeeves2 »

ETH_start wrote: post #106

If I can be allowed a bit of sophistry: It's a beautiful thing for treatments to be devised for rare conditions, to give people decades more life. It would be more wonderful still if we devised treatments for aging, the universal condition, to grant everyone decades more life. Hardly anyone deserves to die. The vast majority of people are singularly incredible and worthy of life. They deserve to be equally safe from…

>It would be more wonderful still if we devised treatments for aging, the universal condition, to grant everyone decades more life.

Well, people are people. Somehow the life of a 90 year old is less worthy that than that of 20 year old. As to how they arrived at the magic number of 90 remains a mystery to the fictitious society where individuals routinely live for 9000 years.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#142

Post by 7thaccount »

bdcravens wrote: post #4

I have CF, and I take Trikafta. Before Trikafta, I usually had a 5+ day stay in the hospital every year, and sometimes I have would very stubborn respiratory infections that just wouldn't go away. I was mentally preparing myself for inevitable decline and eventual death. Trikafta changed my situation dramatically. I've had no hospitalizations, and most the classic CF symptoms are either gone or extremely diminished.…

I had a close family friend (many decades older than me) lose his young daughter to CF back in the 60s or 70s. He and his family helped run the CF walk each year in their area and I'm sure made some major donations to research regarding it.

Hearing about any kind of advancement is huge. I can't even begin to understand what you've gone through, but am so happy to hear there is a new medicine to help with such a cruel disease and that it's made a world of difference to you. Sometimes it feels like medical science is still in the dark ages and I get saddened that we haven't got flying cars or Dr. Beverly Crusher can't wave some device over me and fix all the ailments I now have. Other days I hear about these kinds of advancements and it makes me smile!

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#143

Post by dennis_jeeves2 »

Scoundreller wrote: post #98
ForHackernews wrote: post #29

This is the future I want to live in: one where radical advances in gene therapy are curing (or nearly curing) horrible illnesses humanity has suffered with for thousands of years.

already a thing: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9512634/

Summarize it in plain layman's language for me please...

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#144

Post by cbeach »

kelnos wrote: post #85
cbeach wrote: post #66

Earlier quoted context omitted.

I've seen conversations like this before, regarding the heavy cost that Big Pharma levies on treatments for major diseases. And US companies frequently come up in these discussions. But the alternative, without the massive cashflows, is a world where the research never happens, and the diseases haunt us forever. The Big Pharma treatments will eventually become public domain, and may inspire other cheaper treatments p…

What about direct government funding? Isn't that a reasonable alternative? Maybe not a politically-popular one, but I wouldn't be surprised if health care overall would be cheaper under a system where pharma research is done with public money, and then isn't allowed to be patented. Might even in save enough money to avoid much in the way of extra taxes to fund it. Hell, a lot of medical research is funded (in part) b…

Having the government direct funds and choose winners and losers seems a lot more dangerous than leaving it to free market forces.

It's easier to corrupt one or two government officials than it is the entire international capital marketplace.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#145

Post by mmustapic »

ETH_start wrote: post #138
mmustapic wrote: post #128

Earlier quoted context omitted.

Many incurable diseases come with an awful quality of life, like CF. Even cancer, treated or not, is a terrible experience. Just aging, what you call “a disease”, is nothing like that.

Aging comes with a terrible quality of life. By the end, the person is severely debilitated. Osteoporosis can make it so that a fall can lead to major fractures, which leads to a severe reduction in a person's independence. Macular degeneration can make an elderly person blind. Neurological deterioration can take the form of conditions like Alzheimer's, where a person loses their memory of everyone they love. The bod…

Alzheimer is not aging, it is a specific disease. Same as cancer. Sure, advanced age can make you more susceptible to some diseases, but aging itself is not one.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#146

Post by ETH_start »

mmustapic wrote: post #145
ETH_start wrote: post #138

Earlier quoted context omitted.

Aging comes with a terrible quality of life. By the end, the person is severely debilitated. Osteoporosis can make it so that a fall can lead to major fractures, which leads to a severe reduction in a person's independence. Macular degeneration can make an elderly person blind. Neurological deterioration can take the form of conditions like Alzheimer's, where a person loses their memory of everyone they love. The bod…

Alzheimer is not aging, it is a specific disease. Same as cancer. Sure, advanced age can make you more susceptible to some diseases, but aging itself is not one.

Aging eventually makes you orders of magnitude more susceptible to most major diseases, while coming with its own set of debilitating effects.

Aging is the gradual accumulation of cellular and bodily damage. Nothing would do more for human health than having effective treatments for arresting and reversing that degradation.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#147

Post by Scoundreller »

dennis_jeeves2 wrote: post #143
Scoundreller wrote: post #98

Earlier quoted context omitted.

already a thing: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9512634/

Summarize it in plain layman's language for me please...

They take out some of your cells, tinker with their genetic sequence, and put them back into you.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#148

Post by pradn »

amplicons4ever wrote: post #52
elektor wrote: post #24

Earlier quoted context omitted.

"In 2037 the patent will run out, and the generic price will likely be 90% less." Unfortunately, that's not guaranteed to bring a price drop. Humira is a good example of that; it recently went generic but much of the savings went to higher rebates to pharmacy benefits managers. Some reading for anyone curious: https://www.reuters.com/business/healthcare-pharmaceuticals/...

You're talking apples and oranges... Humira is a monoclonal antibody (a biologic drug), not a small molecule. Biologics require cell culture systems and a completely different manufacturing process than small molecules, and are very complex drugs. The "generics" (called biosimilars) aren't significantly cheaper because they're simply very expensive to manufacture at scale. Humira or its "generics/biosimilars" will ne…

Humira's biosimilars are roughly 20% of the cost of name-brand Humira ($600/mo). It can even be down to 10% of the original cost, or lower, in some shops. You can buy a month's supply for ~75 from an Indian pharam supplier online, for example. The slight kicker is that the biosimilars are not 100% the same (fat) molecule as the original adalimumab.

Insurance companies are starting to say they wont cover name-brand Humira without a strong doctor's note.

Still, the price of the drug went down from being completely unaffordable without insurance to the price of an car payment. It's still expensive, but much better than before. You're not as tied to your company providing good insurance, for example.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#149

Post by markus92 »

AdamN wrote: post #139
TechnicalVault wrote: post #131

Earlier quoted context omitted.

If you've ever had to organise a scientific study you'll understand why. Privacy and ethics are important but they make recruitment of a large and representative sample for any medical study a nightmare. First you'll need to run your protocol past an ethics board and do back and forth until it's agreed. Once you have that done you'll send out an invite (often blind) in hopes of getting people who fit your study aims…

It seems like we really need to move forward to 'indefinite/active studies'. I believe some researchers are trying to get onto this pattern but of course there are major privacy/quality of care concerns. By 'indefinite/active studies' I mean that the studies never stop - data just keeps going back into the system as a flywheel of the drug distribution process. I take a second-generation drug for CML (leukemia) and no…

These kind of platform trials are getting more common luckily! Famous example is the COVID Recovery trial.

Re: Cystic fibrosis breakthrough has given patients a chance to live longer

#150

Post by pradn »

pradn wrote: post #148
amplicons4ever wrote: post #52

Earlier quoted context omitted.

You're talking apples and oranges... Humira is a monoclonal antibody (a biologic drug), not a small molecule. Biologics require cell culture systems and a completely different manufacturing process than small molecules, and are very complex drugs. The "generics" (called biosimilars) aren't significantly cheaper because they're simply very expensive to manufacture at scale. Humira or its "generics/biosimilars" will ne…

Humira's biosimilars are roughly 20% of the cost of name-brand Humira ($600/mo). It can even be down to 10% of the original cost, or lower, in some shops. You can buy a month's supply for ~75 from an Indian pharam supplier online, for example. The slight kicker is that the biosimilars are not 100% the same (fat) molecule as the original adalimumab. Insurance companies are starting to say they wont cover name-brand Hu…

Oops: Humira ($600/mo) -> Humira ($6000/mo)
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