what is your opinion?

[vinnie1973]

Do you think there will ever be a cure for CF? Or do you think that hospitals and pharmaceutical companies will continue to promote and advertise their products and services to "maintain" CF and many other illnesses rather than develope a cure?

Think about it. I am not asking if you pray for a cure or hope they will find a cure, but do you think it will ever happen?

If Honda developed a car that would last a lifetime, would they be in business? or would they rather lease you a car knowing in 3 years you will be back for another one.

If there was a cure for diseases, who would fill all those hospital beds and who would buy all those medicines advertised on tv?


I really want to know your opinion on this topic.

 

[anonymous]

Hi Vincent

I don't think there will be a cure any time soon, but I don't doubt that they are trying. Just think how long they've been looking for a cure for Cancer and now millions are being spent on AID research.

I am sure the treatments improve all the time. If I think back to the 1980's in SA the only enzyme was Cotazyme(not sure of the spelling) which could make you very nausious and didn't work very well, and there was no such thing as Ciprobay and the only thing that was nebulized was atrovent and berotec with normal saline. The CF'ers had it much tougher then!

In 5 years time we might be surprised at the developments (you guys in the USA long before us)

keep well

Joanne, mom to Monique 20wcf - South Africa

 

[Lilith]

Hey, Vincent

You want an honest (and very negative) answer? No. They will never find a cure for this disease or any other for reasons you already stated. Too much money is to be made from the treatments, and there are too many jobs that would be lost. As far as advancing treatments, yeah, they'll improve them, but not enough to cure the disease. That way, you live longer, which puts more money in their pocket because that's more of the medicine you have to buy, without actually curing you. It's really sad and pisses me off, but that's the way the world works now adays. Everything's about profit. Take polio. We developed a cure for that, but it's been YEARS since we've made any major breakthroughs in medical science. Why? Because they realized that they lost money on that deal.

Sorry if this bummed anyone out, but more likely than not, there won't be a cure for this disease. Too many pharmaceutical companies' executives enjoy their Aston Martins.

 

[anonymous]

Lilith,

I agree with you completely. It is all about the mighty dollar. It is sad to think, but true.

Angie

 

[JazzysMom]

I AGREE.....

 

[miesl]

I problem I have with the money arguement is that you also assume that the R&D workers would be willing to keep silent about cure-supression. That's not going to happen. In order to determine if a medication is a dud, treatment, or cure, you have to do testing... who does the testing? It's sure as hell not the executives.

Plus, in the case of CF - you have to assume that the pharma companies working with the CFF (and possibly the CFF itself) are equally corrupt.

I just don't buy it.

 

[debs2girls]

The reason some researchers go into this type of business is because they have loved ones with the disease or have lost someone with it and they want to find a cure for it....I dont think, jmo, if they found a cure they would supress it...and if they are not actively searching for a cure or better treatments at least, then the funding isnt forthcoming....
The reasons you stated are very good one's...and are probably correct to an extent....I dont think they will find a cure anytime soon...but we cant give up hope that one day there will be one.
Debbie

 

[Diane]

A "cure" ? No............... a "better life sustaining treatment"? Yes

it seems to me that cf has to be prevented .. not cured........ How do you "cure" a faulty gene?

 

[Grendel]

They will never find a cure, cause they will never seek a cure, as they seek only band-aids to maintain their economic models.

 

[2005CFmom]

I agree with Diane. How to you cure a gene defect permanently? I think they will eventually come up with a way to "cure" the cells, but since cells constantly regenerate it won't be a permanent fix and will require the "cure" to be taken regularly.

 

[thelizardqueen]

Maybe its not all black and white - but how do you cure a "faulty" gene? Replace it with the correct one. I've heard through my clinics and doctors, that they are ways that a faulty gene can be replaced - say by introducing the correct one through a cold virus, etc. Problem is, is that with CF there are so many variations on the mutant gene that its hard to pinpoint which one it is that's faulty for each individual person. CF comes in many different forms and variations. As to whether they'll find a cure - I say yes, someday they will. I'm not a pesimist. I've been told by various doctors, that we've come to far in the fight for CF - in the 60's the life expectancy of a child with CF was 6 years old if that, and no one really knew about the disease. Look how far we've come with treatments, etc. Its only a matter of time. Some of my doctors have told me that they will find a cure in my lifetime - that I doubt. I think in the end, if a cure is found, it won't be withheld from the public - that's not right, and not likely to happen. Myself though, I would be happen enough to live with CF - and not let it take my life till I'm in my 60's even 70's. If doctors can maintain my quality of life for that long - I'm a happy woman.

 

[Lilith]

<blockquote>Quote<br><hr><i>Originally posted by: <b>miesl</b></i><br>I problem I have with the money arguement is that you also assume that the R&D workers would be willing to keep silent about cure-supression. That's not going to happen. In order to determine if a medication is a dud, treatment, or cure, you have to do testing... who does the testing? It's sure as hell not the executives.



Plus, in the case of CF - you have to assume that the pharma companies working with the CFF (and possibly the CFF itself) are equally corrupt.



I just don't buy it.<hr></blockquote>

Coming from one who has little to no faith in the human race, remember this; people can be bought and paid for. If they ever DID discover a cure, the scientist who discovered it will most likely be paid off not to say anything. In the other senario, if they are a tride and true individual who came forward, it would be easy for a large company to surpress them and deny everyything, even if they gained media attention. If you couldn't tell already, yes, I do believe in conspiracy theories, but at the same time, stuff like this happens every day, whether you hear about it on the news or not. People can be easily bribed to keep quiet.

 

[JennifersHope]

I personally feel that if they had a cure for CF we would be among the first to know it...... The fame and fortune that comes with finding a cure far surpasses anything.....plus...the company that finds the gene or mutation fixer.. or the right drug.. would be bazzionares...

Take HIV for example, they have many meds that they give now to make you not even test positive for HIV. Granted you need to take the meds to stay that way...but the point is .. they researched and found something.. and then released it....

I know I have said this before but just to give you an idea.... the amount of research that goes into a drug can take 20 or more years.. Their is a new form of cancer treatment callled endostatin therapy.. It has been in research for over 20 years... The company that is researching this has been spending all their own money and won't make anything unless it becomes approved.. after all these years it is only in Phase two...

I don't know if they will have a cure for CF in my lifetime, I agree that their are so many mutations.. I have researched a great deal about the cold virus being introduced as way to insert the corrective gene.. It really looks promising...and I think now with more and more ppl being dx with CF related to all the new DNA testing.. their may be a bigger push for a cure.....

I also know that the more ppl who have a disease the more money will go toward research.... That sucks for me.. but it is the way it goes I guess.. I have a disease called Addison's disease.. ( as I have said many times) with Addison's only 1 in 180,000 ppl have it and currently their is NO RESEARCH being done for it... and for me taking all these steoids is way worse then my CF at this point....

 

[anonymous]

I agree that the quality of life will always be improved through new meds with CF but I'm not sure about a cure and that goes back to the pharm companies not making all that money if there was a cure and the meds were not needed anymore. After all, they pay off companies NOT to manufacture generic forms of their drugs, so that shows that their bottom line is their highest priority.
It is interesting to me that, like Lilith stated they irradicated polio and small pox too so sometimes I wonder if it matters how epidemic something is before there is a cure??? I'll bet if the bird flu did come here, there would initially be some deaths from it but a cure would be found pretty quickly IMO. Granted, CF is whole different type of disease, I realize this, I guess I was just sharing some things I had thought of.
If new meds improve the quality of life for CFs born today, allowing them to live fairly normal lives then IMO that's good too, it's just too bad it will cost so much money to have this 'fairly normal life'.
Hope

 

[supermanfan]

Oh, I so agree with Lilith (I believe that was the poster). I also encourage any people to donate to other CF organizations other than the Foundation.

I remember when I was younger, and our camp here in California use to get funds for the camp (we did our own fund raising, and were always in the red). The foundation stopped giving us money... mostly out of their own greed. Yet, they drove around in Catillacs, and had nice offices with plush leather chairs.. the whole bit. They don't give families that are in need of money for hospital visits, or doctor visits, or mediation. My parents were broke paying my medical bills. They inquired once about getting help from a company linked to the foundation, and you know what they were told? Since my parents owned two cars and a home my dad, in the Army, would have had to sign over his paycheck, and they would have given them an allowance <img src="i/expressions/face-icon-small-shocked.gif" border="0"> What? Yes. Now how would that have helped my parents? My other two sisters would never have been able to do the things they did. That is a crappy option to give a family in need. So my parents turned them down, and when we were old enough my mom went to work. Of course Blue Cross of America was also the most crappy insurance one could ever across... it's all about greed, and that is just sick!

The Foundation revels in the money they make with all the donations... They don't want to cure Cf. Let's face it. They didn't even give Gentech (who created Pulozyme) any help on funds to creat the new drug. A drug that was the first drug in thirty years to help thin out the mucus. Shame on the foundation, shame on them. I will never give a dime to them again in my life, and I tell all my friends. Families and patients need that money for medications and treatments, not the fatcats at the foundation.

Oh, and one more thing... transplant! Do it. It will save you life from CF.

 

[anonymous]

I think the best think is to donate money directly to small biotech company's. They are the best chance for finding a "cure". Big Pharmacudical(sp) company's do not want a cure. I am also getting a little suspicious of the cf foundations motives.

 

[anonymous]

I suspect the reason they don't give money for camps anymore is because of the risk of cross contamination. I can't belive they STILL have camps but there's some dude on another site who has one and all I can think of is germs, cepacia!!!!

And I don't think genetech made pulmozyme out of the "goodness of their hearts" -- that stuff runs about $1500 a month before insurance. And how was tobi developed -- some guy wanted to make a quick buck and someone suggested Orphan drugs. That drug was developed in 1997 and it costs $3060 for a month supply.

I'll keep giving to the CF foundation because over 95% of the funds they get goes into research. can't say that about united way and some of the other charities. It's amazing the number of drugs coming down the pipe because of money from the CF foundation.

 

[tommy]

right off hand i cannot think of any genetic disease that has been cured. Maybe someday they will be able to do that gene therapy w/ virus, but it'll only help w/ lung issues. I don't know where you've seen cff people driving caddilacs w/ leather and maybe eating caviar, but that's kinda the impression i get as well. But my thought is yes, it is all about money, and supply and demand. And many people would work very hard to cover up a cure if ever found cause it would mean no more mazaradis and caviar. If anyone can think of any genetic diseases that have been cured please clue me in.


Tom

 

[Faust]

it's called "Planned obsolesence". Look it up, it's a very solid, and mostly raped viewpoint in manufacturing. Anyone ele ever watch Chris Rock? Every see any of his classic stand up shows? He hit it right on the head with "Theres no money in the cure, the money is to treat it". That is 100% correct. If you honestly think that the pharmaceutical companies/research companies (which are extensions of the pharmaceutical companies) truely want to outright cure ANYTHING because it's a nice thing to do for the human race, well, you are either very young, or very naeve, or quite possibly mentally defective. While all the researchers have an altruistic intent of "curing" a disease with their newest findings, those findings will always be turned around into "what drug can we market to help treat the symptoms", type approach.


Taking another line from Chris Rock, What was the last actual disease that we "cured"? Polio? If a particular researcher says "Holy crap, I found out that X might possibly cure CF!!!", their bosses get their information, take their applications, and then find a way to use that data for a way to apply it to treat the horrible symptoms of CF, but not actually use it for the reasoning of curing CF. Even though CF is still very rare in the general populace, it is still in the corporations best interests to offer new "advances" to treat our symptoms, and not a "cure".


Ask yourself this. Just from the cf foundation, who is sponsoring these new CF "drug" trials? Who stands the most to benefit from these trials? If their new drug shows signs of potentially treating CF patients, do you think they will go a step further to understand why it treats and helps our symptoms, or will they continue to try and do patient trials to further new drugs, which means more profit, which means more CEO's drive nice swanky cars...


Sorry life isn't even remotely important to the big pharmaceutical companies. It's all about what is marketable, and what shows any form of promise for profit potential. While the CF foundation is a wonderful organization, they can only go on what research other large corporations are willing to invest in, and that investment, is exactly that, an INVESTMENT. New drugs will come out, our Doctors (who are in general very deeply embedded with the pharmaceutical companies) will recommend new drugs for us to treat our SYMPTOMS, and we will continue to languish, and have our live spans lengthened, but not "cured".

Remember guys, even if the entire human genome was mapped, and cystic fibrosis only killed rich white republicans, it wouldn't warrant any true form of authoritarian initiative. Ya know why? Theres no real money involved with saving anyone disease wise. The only real financial opportunity exists with share holders, and profit margins. Of course I could totally be wrong in this assessment, but if you don't understand and don't grasp the basis which is human sinister being, then you're wrong.

 

[Faust]

Hey remember this old quote "If Sh*t was valuable, poor people wouldnt have assh*les". That explains it all right there.