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How close are they really?
- Thread starter gabby
- Start date
when i was younger i was always told well oh if you live to 20 or whatever they'll hav a cure by then and blah. But i wouldn't anticipate anytime soon....to be cynical i would think it's not in everyones best interest cause well the profit for those cf drugs makes some rich.....but iv'e not heard about anything since gene therapy
I personally don't believe that the scientist working on finding a cure are the slightest bit concerned about pharmaceutical profits, I think they would be much more concerned with the world wide recognition they would get for discovering the cure of a fatal disease that affects an every growing amount of people. JMHO
Jen
Jen
serendipity730
New member
Gene therapy turned out to be much more complex that originally thought. There are a lot of ongoing projects, particularly at Johs Hopkins. However, I certainly expect a cure in my lifetime, hopefully, in the lifetime of babies born now with CF.
I don't know, maybe I've been listening to that one guy too much that writes books banging the Rx industry. If they found a cure, then they would get the profit from that one time only. If they keep creating drugs such as TOBI, Pulmozyme to alleviate the symptoms, then that's much more profitable for them in the long run.
I do think or certainly hope the CFF has a cure as a first priorty, though. Only time will tell..
I do think or certainly hope the CFF has a cure as a first priorty, though. Only time will tell..
Emily65Roses
New member
I'd like to hope so too. But I also know that corporate America (drug companies included, of course) is full of unadultered greed. So in my opinion, it could go either way. I'm not holding my breath, though. I can't anyway. <img src="i/expressions/face-icon-small-happy.gif" border="0">
it was somithing like 17 years ago they found the gene for cf and then they were saying like "yay a cure is not far off" but here we are 17 year later. I don't know if i would go as far as deeming it a conspiracy, but it is a bit ridiculous.....i mean cf is one of the most research funded diseases but where is the results..............$1100 for a month of pulmozyme or twice that for tobi......sorry if i come off as cynical but wtf??
Look at it this way, if a cure is found for CF, there is A LOT of money to be made for those who find it in that the other drug companies, non-profits, etc. will be reaching out to whoever finds the cure to find it for the other many diseases. So, for those of you who are negative and think that the drug companies are only in it for the money, maybe you are right, but the money is finding a cure. DON'T GIVE UP HOPE!!!!!!!! My goodness, keep fighting so that you can live a much longer life.<img src="i/expressions/heart.gif" border="0"><img src="i/expressions/rose.gif" border="0"><img src="i/expressions/face-icon-small-wink.gif" border="0">
Here's a scary thought we should all consider:
1. We (those of us with CF) want a cure
2. Corporate (those who profit off of the pain and suffering of others) want a constant cash flow
3. A cure for Cystic Fibrosis = a doorway to a cure for hundreds of diseases = a net profit loss for the pharmaceutical industry and thousands of lost jobs for those in the corporate and non profit sector (our "friends" at the
Cystic Fibrosis Foundation)
4. The scariest thought of all: If a cure is found how much are you willing to pay for it? $100; $500; $1000; $1,000,000; $1,000,000,000 - Can we as a society allow for corporate to put a price on life? Does corporate
have a right to make money? After all, the corporate sector is going to lose (hypothetically of course) billions in lost profits due to cures that stem from gene therapy.
Just a happy thought
Sean 27/m w/CF
1. We (those of us with CF) want a cure
2. Corporate (those who profit off of the pain and suffering of others) want a constant cash flow
3. A cure for Cystic Fibrosis = a doorway to a cure for hundreds of diseases = a net profit loss for the pharmaceutical industry and thousands of lost jobs for those in the corporate and non profit sector (our "friends" at the
Cystic Fibrosis Foundation)
4. The scariest thought of all: If a cure is found how much are you willing to pay for it? $100; $500; $1000; $1,000,000; $1,000,000,000 - Can we as a society allow for corporate to put a price on life? Does corporate
have a right to make money? After all, the corporate sector is going to lose (hypothetically of course) billions in lost profits due to cures that stem from gene therapy.
Just a happy thought
Sean 27/m w/CF
Good Gosh, you are assuming that everyone in the industry is an a$$hole! I realize that there are some bad people out there, but come on, at least give some people some credit. You are also making a lot of people lose hope for goodness sake!!!!!!!! <img src="i/expressions/face-icon-small-shocked.gif" border="0"><img src="i/expressions/face-icon-small-sad.gif" border="0"><img src="i/expressions/face-icon-small-mad.gif" border="0"><img src="i/expressions/face-icon-small-frown.gif" border="0">
As a mom with a child who has CF, I also wish with all my heart that the research toward a cure could move much faster. But as a scientist trained in biochemistry and molecular genetics, I know how hard it is to translate basic genetic findings into practical treatments. I think the CF community made a mistake in implying that the discovery of the CF gene would automatically lead to a rapid cure. But it's not for lack of a sincere effort on the part of the researchers. Please remember that much of the research is conducted not by pharmaceutical companies, but by scientists at universities or research institutions, who receive funding from the government or private foundations. One of the most prominent researchers (Paul Quinton) has CF himself; others have children with CF. As Jen pointed out, although scientists can be nasty and competitive, they're more likely to driven by their egos than by the possibility of financial profits. And my impression is that the people working in the CF field are an unusually nice, truly dedicated group. This heartens me, even though I know we're unlikely to see any immediate miracles.
Bambi, mom of Jordan, 16 w cf
Bambi, mom of Jordan, 16 w cf
Would a "cure" that corrects the basic CF gene defect do a thing to remove existing lung scarring or the other long-term effects of this illness? If not, at most, it would help kids who didn't have much of it yet live healthy from then on; and us critically ill folk would still be screwed without transplants, etc.
This is very interesting and im surprised it hasnt been mentioned in previous discussion (to my knowledge anyway).
I think the last poster has a very good point. A cure would be great but its unrealistic to see it as a "cure" because even when the cf is gone and our bodies FINALLY regulate sodiums/mucous/membrane controls (sorry if that was scientiffically incorrect- what i mean is we stop being marvelous mucous makers) the fact is we still have pre-existing lung damage. So really, a cure would leave us in the exact same state we are now.
With that said, i hope nobody takes me the wrong way. A cure would be great! All that free time and think9ing about a cf-free future is just toooverwhelming. I mean, i have 60% lung function fev1 and i feel great.. if i could stay like this forever i'd be happy.
All i am saying is we shouldnt have too unrealistic definitions of what a cure actually means.
Kate, 19 Australia
I think the last poster has a very good point. A cure would be great but its unrealistic to see it as a "cure" because even when the cf is gone and our bodies FINALLY regulate sodiums/mucous/membrane controls (sorry if that was scientiffically incorrect- what i mean is we stop being marvelous mucous makers) the fact is we still have pre-existing lung damage. So really, a cure would leave us in the exact same state we are now.
With that said, i hope nobody takes me the wrong way. A cure would be great! All that free time and think9ing about a cf-free future is just toooverwhelming. I mean, i have 60% lung function fev1 and i feel great.. if i could stay like this forever i'd be happy.
All i am saying is we shouldnt have too unrealistic definitions of what a cure actually means.
Kate, 19 Australia
serendipity730
New member
Ok, I think that the drug industry is evil, but people also want the fame of curing a disease. Some genetic disease that involve enzyme deficiencies (not pancreatic enzymes, ones found throughout the body) have been practically cured. For these diseases, enzyme replacement therapies have been found, so that people with these diseases can live a normal life span. I think that there is definitely merit to the idea that it is in the best interest of the drug industry to keep sick people sick, but let's hope that decency prevails.
Emily65Roses
New member
As far as a cure not helping existing lung damage, that wouldn't be the main goal anyways. The people who are trying to cure it are looking at the "big picture." And in the big picture, us existing CFers are kind of ignored. They'd be looking at a cure for babies and young kids to get rid of it before too much lung damage would be acquired. Not that that isn't a good goal. It most certainly is. But let's not get too unrealistically optimistic here. Us existing first generation adult CFers are going to be overlooked almost every angle you go at it from.
I have thought about this for years and came to a conclusion that a " cure" will never be found. But what i do think will be found , is kind of like "insulin to a diabetic". I believe they will find a more effective treatment that will halt or substantially slow down the progression of the disease.
NoDayButToday
New member
If a cure will only help those with little to no lung damage yet, as a lot of potential cures seem to be, they should also be working on perfecting lung transplant.
Speaking as a mom who does a lot of fundrainsing to raise money for CF, I think they have come a long way, and hope my daughter will live to see a cure. When you hear about how many pills CF patients used to take, compared to what they are taking now, you can see the progress . If everyone is out to make a fast buck then they are going the wrong way if you see the decline in the number of pills people take.
Maybe a cure won't be found but they are certainly looking for a way to control the disease. If any of you want to believe that they are out to make a buck then believe that they are trying to find a control so that you can live longer and continue to pay for your meds. Who cares what their motive is! Others who are a bit more positive believe that there are still good people in the world that are trying to put an end to the suffering so many people have (no matter what the disease). I believe most people become Dr's and researchers because they want to make a positive change in the world. Call it ego or prestige but the original reason was probably a caring heart.
My daughters CF Dr. is a well known researcher and has stayed up all night holding a childs hand during a lung transplant. He did it because the patient asked him to, and could have left because she was under anesthetics but he didn't because he cares. Keep in mind that he has a family of his own as well, that would have loved for him to be home that night.
Please don't try and take away the hope that many of us have, the hope that gets me through my day sometimes. I do not have the disease myself but I still suffer because of it, and hope is my strength.
Maybe a cure won't be found but they are certainly looking for a way to control the disease. If any of you want to believe that they are out to make a buck then believe that they are trying to find a control so that you can live longer and continue to pay for your meds. Who cares what their motive is! Others who are a bit more positive believe that there are still good people in the world that are trying to put an end to the suffering so many people have (no matter what the disease). I believe most people become Dr's and researchers because they want to make a positive change in the world. Call it ego or prestige but the original reason was probably a caring heart.
My daughters CF Dr. is a well known researcher and has stayed up all night holding a childs hand during a lung transplant. He did it because the patient asked him to, and could have left because she was under anesthetics but he didn't because he cares. Keep in mind that he has a family of his own as well, that would have loved for him to be home that night.
Please don't try and take away the hope that many of us have, the hope that gets me through my day sometimes. I do not have the disease myself but I still suffer because of it, and hope is my strength.