Finding A Cure for CF

[lilmac7]

my response to that Amy would be that they dont have a choice with a desease like that, it's just too powerful and above them to treat with how it progresses fast and so intensely. maybe I should've stated that I believe it all depends on the desease we are dealing with, something like that they had to come up with something to stop it in it's track before people got it because once people contracted the desease they couldn't do anything about it, and people know that so the money is in the vaccine since people know they cant do anything for you if you catch it and if you do catch it you'll die, it all depends on the desease I think. And with that said I do believe that scientists are fully capable of curing it but it all goes back to who pays them to do what and mess around with what substance/drug, and one example why I believe this is that they will never use something natural and experiment with it unless they concoct it in some way that they can have a patent and make money, pharmaceutical companies will never tell you "oh you have scurvey! that's because your lacking Vitamin C in your diet eat more oranges" nope! there's no money in that for them, but of coarse veryone knows British people got the name "Limey" because in old days when they would sail alot and get scurey they would eat limes to get rid of it and also keep from getting it.

Another thing that really makes me think is that for instance HIV everybody knows that if you get that then it will develop to AIDS probly in 2-5 years and that's I think is being generous, or well that's what we are told. But how long has the famous 'Magic Johnson' had HIV and (to the best of my knowledge) it still hasn't devoloped to full AIDS yet?! He either has access to stuff the general public don't because ha can pay for it or he took matters into his own hands and researched to find alternative treatment which I believe may be out there but not publicised enough, who knows but that is something that always makes me wonder and lean more toward my opinion, but that was a good point you made.
Nice debate we have going here! I like it!

 

[JennifersHope]

As far as I know, every single American is entitled if they have HIV/Aids to recieve the cocktail of meds they need to keep it at bay either through private insurance, medicaid or chairty care.

The problem that I see if compliance with HIV/Aids meds, Any patient that I have seen in the emergency room that has had a problem, infection, sickness etc is because they CHOSE not to take their meds because of the side effects of the drugs, not because they didn't have access to the drugs... Granted the drugs can make you feel sick but I would bet my life that any CFer given the choice for an all but cure would give their right lung for it.

I have this one in particular patient that always comes in with an HIV exacerbation because she doesn't like her meds and how they make her feel. I always tell her how I know so many ppl who would trade places with her in a minute to be able to have a chance for a normal life. My guess is that she or they just can't comprehend it. It isn't my job to judge her and I try really hard not to. I try to remember she just can't understand.


Jennifer

 

[fugikitten2087]

Actually I've been told personally at one point that they dont have the numbers to want to do research.. It's all a numbers game there arent enough CFer's and most of the people invovled in the finding of cure havent been personally effected by the disease..Your right that the money is there but the thing is they wont make anything, it's all a numbers game.<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>amy</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>lilmac7</b></i>



A cure?.....No! I'm sorry to say but there's alot of what I'd like to call 'medical politics' out there. We have to face the facts it is a business for the pharmaceutical companies out there so for them to come up with a cure would proberably make them some money in short term for whoever that can find a way to afford it, you know it would cost four arms, three legs and two heads to pay for it! lol! and then those patients would need nothing from them again in life. They don't see an approach like that wise, so the other thing to, do which they obviously have done as people with CF are living longer now a days compared to years gone, is to find medications/therapies etc. to preserve the life of a cfer as long as possible providing that they follow their regime, take their drugs constantly and live better and longer than if they didn't do anything at all. And as long as patients do this, which we have no choice unless we prefer to die, they rack up millions or billions long term.







And that's just my point of view, so in short I'll agree, a 'cure - no, better treatments - yes</end quote></div>



A cure would most likely require medicine to be taken for the rest of CFer's life.



So your theory that there's no money in a cure is wrong, my friend.</end quote></div>

 

[NoExcuses]

well if course.

that's why the CF Foundation raises money and then partners with pharmaceutical companies to create a win-win situation.

 

[eli]

I have many mixed emotions on this topic.

Although, i would love to see a cure in my lifetime i don't think there will be one and if there was than that would be a great surprise and a dream come true.

Not to sound too negative, i do think there will be a tretment like there is for diabetic sufferers, and will prolong life in cfer's and i see that one coming in the near future. That's just my thoughts and my two cents in.

Although, i hope i am wrong and i hope i'm making sence, because i am very tired and have had a realy bad day. O/T, i know.lol

 

[JazzysMom]

I dont know about an acutal cure. If it happens it wont happen in my life time. All the things discoverd with CF are still fairly new. I am no Medical expert (tho having CF should put us in the running LOL), but I would think having all the different mutations (many which are discovered yet) would make it impossible or nearly so to have an actual cure. In order to actually have it I would think the cure has to be connected to defective gene(s) & I just dont see that happening!

 

[princessjdc]

I do believe one day there will be a cure for CF, Im very positive about this, and cant wait for a cure so I dont have to do treatments anymore and be more normal. I also believe it will be soon too.

 

[anonymous]

If there was an actual cure for CF how would the CFF make money? They are a Big Money making business. So a very expensive control perhaps for the young and healthy with cf might work out one day soon. The folks with CF who do their therapy, avoid stress and eat healthier will live the longest.

 

[NoExcuses]

The CFF isn't a business - they're a non-profit.

Notice how they give millions to develop drugs? Ya, those aren't profits - those are funds raised.

 

[ihatecf]

I dont think I will witness a cure or even better treatment of cf in my lifetime. I hope that they cure cf in the future bcz its unfair that cf is the only lethal disease still uncured.

 

[anonymous]

Thanks for all the responses.
I think that one of our biggest problems is the lack of awareness out there of cf. Not to many people know about this disease and we really need to put it out there. But we need to have positive attitudes so people want to help people that atleast try to help themselves...like using AIDS for and example...for a most part there are ways to prevent AIDS or HIV ... don't share needles, and don't have unprotected sex with someone ( especially if you don't know them). My point is atleast these people had a chance not to come in contact...we all had that same opportunity we just chose not to take it so why are they being rewarded for something they themselves are spreading when we don't even really get mentioned and this is a genetic disease. We need to spread awareness and the more people that are getting cf out there and stay positive. I really don't want to think that they would hide a cure because of money that makes me sick to my stomach...that is the most horrible thing I have ever heard and I can't believe there are people out there that would agree with that ...they are the ones that have to live with themselves.
I am so glad to see how many people are still positive about finding a cure and or a managable way to deal with cf like insulin for diabeates...makes me have all the hope in the world.
Again thank you for all the response's

 

[anonymous]

why would they wanna find a cure, then all them poor drug companys wouldnt get there money. they only think about there pockets, they dont care about anything else... thats my opion

 

[Lilith]

I agree with anon. We'll probably see improvements in treatment, but that's it. Drugs are too big of a buisness. Its like cancer. They'll never cure that, either. They have whole professions dedicated to it! If they found a cure, those docs (oncologists (sp?)) would be out of a job. Thousands of people dedicated to cancer research would be jobless. I don't think they're going to let that happen. Its the same with CF, however broadly known or not the disease is. There's still a buck (or a million) to be made.

 

[Ender]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lilith</b></i>

I agree with anon. We'll probably see improvements in treatment, but that's it. Drugs are too big of a buisness. Its like cancer. They'll never cure that, either. They have whole professions dedicated to it! If they found a cure, those docs (oncologists (sp?)) would be out of a job. Thousands of people dedicated to cancer research would be jobless. I don't think they're going to let that happen. Its the same with CF, however broadly known or not the disease is. There's still a buck (or a million) to be made.</end quote></div>

I dunno about that. Yes a lot of people make money off of it, but, don't you think they would make just as much money off of a cure, if not more. Plus the fame and the money the researcher would get for finding a cure like this would be phenomenal.

Same with cancer. I mean, the company that finds the cure will get ALL the cancer business. Don't you think that is incentive enough?

 

[Lilith]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Ender</b></i>

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Lilith</b></i>



I agree with anon. We'll probably see improvements in treatment, but that's it. Drugs are too big of a buisness. Its like cancer. They'll never cure that, either. They have whole professions dedicated to it! If they found a cure, those docs (oncologists (sp?)) would be out of a job. Thousands of people dedicated to cancer research would be jobless. I don't think they're going to let that happen. Its the same with CF, however broadly known or not the disease is. There's still a buck (or a million) to be made.</end quote></div>



I dunno about that. Yes a lot of people make money off of it, but, don't you think they would make just as much money off of a cure, if not more. Plus the fame and the money the researcher would get for finding a cure like this would be phenomenal.



Same with cancer. I mean, the company that finds the cure will get ALL the cancer business. Don't you think that is incentive enough?</end quote></div>

No, they wouldn't make as much on a cure as they would with just improved treatment. The 'cure' would be a one-time shot. You get it, you're cured, its done. As opposed to recieving another pill/aresol/etc, that you'd need to keep buying for the rest of your life. In the long run, more money would be made from the continued medication.

As for the fame thing, it would be a nice perk, but I don't think it would be enough compared to the money a lifetime of medication would bring in.

Sorry to be negative, and it is corrupt, but considering the behavior of the business world today, I wouldn't be at all surprised.

Now, if the cure itself were something that you'd have to recieve regularly, to keep CF surpressed, that might be different...