How close are they really?

[WinAce]

No one's trying to take away anyone's hope, Anonymous. But at the same time, most of us wouldn't want to nurture false hopes, because--among other things--they're a real letdown when exposed as nonsense. Also, it's important to stay realistic with this illness. Cloned lung transplants, or something like that which didn't require anti-rejection drugs, would be as close to a "cure" for CF as I can envision. Unfortunately, I don't think they'll get invent those in time to help most of the adult CF'ers who are currently waiting for the conventional transplant, or sick enough to be considering one. Hopefully, your daughter will still be able to benefit from whatever disease-controlling treatment(s) they invent in future.

I reject the view that pharmaceutical companies would suppress a cure if it was discovered. Realistically, they could price it at anything they want, and it would still make more sense for insurance companies to pay than the $20,000 per hospitalization several times a year, Tobi/Pulmozyme, expensive antibiotics, and so forth. The company that found it would make a killing, more than making up for the 2-5 drugs (at most) that it sold to CF patients, and simultaneously destroy the market for all of its competitors. And as has been pointed out, even if they did, a ton of this research is performed by people at government labs and public universities, with no believable conflicts of interests.

 

[UKBASEDJON]

Hi All Just thought I would copy a previous post on this subject

The talk of a 'CURE' for Cystic fibrosis is a very emotive subject isn't it. I suppose anyone who lives with a genetic condition holds out a hope for a cure. I think this is part of the coping strategy for living with a serious condition. How realistic it is, is normally the prelude to some very heated debates. Most organisations involved with the CF committee like to use this catch as it provides a focus for their organisations and more importantly the wider media world. This is not a bad think but I do find that when talking to individuals within these organisations that they don't fully appreciate the reality of this condition. A cure indicates that a treatment may become available that will correct the CF condition. To put it bluntly this will probably never be able to be achieved. I say this for one simple reason, CF effects every one of us at a genetic level in every organ and tissues in our bodies. It effects all the working components of us. Every cell we create in our bodies carries the defective CFTR gene. The highest mortality rates in CF are caused by lung disease were the defective gene causes most damage, but of cause many other principal organs are effected, pancreas, liver, immune system etc, and as we are living longer with this illness other symptom will perhaps become more apparent. However I believe we should stay optimistic. The money raised through the 'cure' label so to speak is being used to develop other treatments for CF. The mean average age of someone with CF is improving. The treatment of the lung condition is getting better.

I personally believe however that more emphasis should be placed on finding new 'non genetic' method of helping with the CF lung disease but sadly I don't get to make that choice. Perhaps new antibiotics, new anti inflammatory drugs, drugs that help the blood retain more oxygen perhaps. More creative thought need here I think.

Sorry to ramble on but this is a subject I guess we all think about. Most adult CF individuals I speak to don't believe that Gene therapy will benefit them. May be this is true, the task is Herculean to get the corrected gene into the lungs and get it to stay there. And what about previous damage, it can't correct for this I believe.

In closing I believe we need a more balanced approach. When dealing with the media a focus is a good thing but we in the CF community live with this condition and I believe we are entitled to a well balanced approach to future treatments that will benefit fit us all to some degree.

What are your thoughts on this?

Regards

Jon

 

[Purplelungs]

Something I heard on the radio...one of the news AM stations...

Back when they had the vaccine for Polio and wiped it out....lots and lots of people lots jobs and went out fo business, stocks went way down, plus the vaccine was way cheap so they didnt make anything off of it to rebound the loss. Because they, kinda like cf, had tons of stuff to help the symptoms and suffering....but once polio was gone all that was gone...you know no more making braces, treating symptoms and such. Well they made a law that the people that head all the pharmacutical companies and the like were responsible for the stocks and not allowing them to go down. Thus higher prices and keep getting higher....well the way this law is written, if they pay attention to it in this day...its actually illegal to make a cure for anything because people would lose jobs and businesses and the stock market would go down for those products, no matter how much they charge for the cure. Think about it they have spent millions maybe more for cancer research and have come up with nothing but things to help symptoms. Yes I know cancer is another hard thing to figure out. but still... Crazy aint it.
I'm not trying to squash hopes and dreams...this is just another one of those things us conspriacy people look at. Ill try to find the article if they put it out on the internet. I hope I heard all this wrong. But I still cant help but think...yup sounds about right, all about the money. Even though I think in conspriracy ways I stil have hope that the babies now will see a "cure" of types. I dont have any hope for my self but that doesnt matter....its the children that matters.