In Your Opinion...When will we have a Cure...take the poll
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>
"This is an exciting time," says Pamela Davis, a professor at Case Western Reserve University who specializes in cystic fibrosis. "We're almost at the point of changing this from a fatal disease to a nuisance."
Now, I don't think it'll NEVER be cured. I imagine they'll do some real work with it. Just not in the next five minutes... BUT that quote is useless. I can find you newspapers from 1989 that say nearly the same thing.</end quote></div>
^^^^ What she said. Here is the deal. Just think how systemic our disease is. It's not like our disease only targets one thing. It's not like our disease only targets our left foot to not place evenly when we walk. Our disease is extremely complex. It affects our lungs, our pancrease, our liver, and our general entire endocrine system. Something that intrusive disease wise is very hard to "cure". Diabetes (something else we slowly acquire) is another disease that is systemic, somewhat like our disease, that has been around forever and has afflicted many more people than CF, and it still has not been "cured". Sure, you can shoot yourself up every day, a few times a day with an injection, massively watch your diet, and exercise your ass off...And you MIGHT not die prematurely from diabetes...Is that a "cure"? Oddly enough most people don't think of that disease and think "Oh that ***** is gonna kill ya"...Even though it still does kill a ton of people with it.
Look at cancer...Heart disease...MD...Parkinsons...There are many other diseases that are much more prevalent that I could list that are fatal and hinder many more people than CF does. Don't we have 30,000 people in the U.S. with the disease? Compared to the other killer diseases number wise, we are VERY low on the priority list. Regardless what the happy shiny people might want us to believe, there isn't a very well funded cadre of extremely brilliant people dilligently working on a "cure" saying "WE MUST SAVE THESE PEOPLE NOW!!!". Sure there are some, but far from what we need to do any timely serious damage vs this beast. Sure we will get new antibiotics, new antiinflammatories, and other drugs to treat our symptoms...But I am sooner to give live birth to a fully grown manatee than I will wake up anytime in my lifetime to find a "cure" is awaiting me.
And even if by some magical avenue, we had a "cure"...How assessable would it be for everyone afflicted with it? Why provide a "cure" for 10-30k dollars, when you have each CF patient needing 4-10k PER MONTH in just drug costs (not to mention dr visits, hospitalizations, etc etc)??? It makes zero sense economically to #1 funnel a ton of money for research to try and cure a disease that only affects 30k people in the U.S., when #2 it is much more profitable to try to lengthen our disease ridden lives with more drugs that are very costly, and #3 there are countless other diseases that are not orphan diseases, that affect much more people, and those still have not been "cured"...When there has been many more brilliant people than our cause has had, pouring countless time into curing those diseases.
Guess how much money the MD telethon has made so far? Now go ahead, take a guess...I'll give you a hint...It starts with a "B", and there is several of those "B's" there. How long has Jerry Lewis, and his never ending laundry list of A list celebs poured their heart into that cause? I remember being like 4 years old and seeing the MD telethon, and them proclaiming just how much money they have received with each one...And how each previous one, was dwarfed by the donations by the following years one.
Guess what? One of my most dearest friends has MD, and I watch him wither away to nothing with every year. He has very little time left, and personally, I view MD (as I do many diseases) as worse than CF. His disease has had all this backing both monetarily, celebrity, word of mouth, and a ton more time than CF has gathered...And yet here he is, slowly dying in front of me.
Now granted i'm not dumb enough to think all diseases, and all disease research, especially genetic research are the same...But let's get real...Our disease is no simple walk in the park. It's very hardcore, and annihilates us at many angles. *IF* we ever get a "CURE", it would be from some cause that is natural, and didn't require a massive pharmacological company to invest millions upon millions into (which doesn't happen). It would be something like eating 5 lbs of Korean Kimchee daily correctly changes our mutation or something. It's simple economics that keeps us tethered to the pharmacy juggernaut teet.
It's the same reason why we don't have light bulbs that last 20+ years. It's planned obsolescence. They make light bulbs to break, so we buy more light bulbs. Same goes for every possible thing you buy that is reuseable. Cars, bikes, digital cameras, you name it. There are countless companies out there, that for each item, purposely makes it so that the item will break down/break with time and you will need another one.
Why think a drug company would want to sever itself from profit differently? Think about what you, as a CF person take in drug wise. Most of us have some form of insurance. While our copays can be 10-50 bucks for each drug, what the insurance company pays is astronomical. Look at pulmozyme alone. ONE BOX of a 30 day supply (@ 1 ampule per day), is atleast 2500-4000 dollars. That is for ONE individual, at one dose per day. Now if you do the drug like they say we are supposed to, @ 2 ampules per day, that is double the cost, so 5000-8000 dollars per month, per person, for ONE DRUG!!!
Now throw in tobi...Another astronomically expensive drug...Now throw in collistin, or whatever antibiotic of the month you are on. Are you on IV's? Oh holy crap that is a huge cash cow right there!! How about in house, or general nursing that the law requires us to have come out and give us our crack?
Do you see what i'm saying? As I have said countless times, in countless threads, if you want to find who is to directly at fault for nearly everything, just follow the money. It makes absolutely zero sense from a $$$ reason to "cure" any disease. Your driving goal $$$ wise is to develope more and more costly drugs that prolong peoples lives, but yet keep them as customers.
It is very simple business economics. And it applies to everything. So for all of us older CF's, you younger CF's, and those parents who just recently have had their young children diagnosed...There is indeed hope...But it's not a "cure". It's a business model of profit, and it is based on keeping your customers coming back.
Same applies to that discussed "nonsense DNA corrector" pill that will supposedly "cure" CF. If that even sees the light of day, and even more skeptically works, you better believe it will have a caveat of "You need to take this 5 times a day for the rest of your life to gain any benefit from it". And oh yeah, that pill will cost atleast 20-500 dollars per pill, and most insurance companies will fight with policy holders endlessly how it is not medically necessary for a holder of said policy to be temporarily "cured" of a disease, when a cheaper route of treatment treats the symptoms of the disease.
In summation, while I really do enjoy human beings on a personal level, and I often marvel at our propensity for art, music, and other beautiful works that we have created over the eons...Collectively, humans really suck. And could seriously be viewed as an "oops, that didn't work right" example of evolution. The description of us in the movie The Matrix isn't that far off. Our actions are those of a harmful virus. Culling and using not only our surroundings for our own short sighted goals, but we also do the same exact thing to ourselves as well.
I look into my nieces eyes and watch with wonder, at how her perception of life, and enjoyment of newness, and delicate expression of love fills her entire life. And I am thankful to be human. And yet, at the same time, I turn on the radio or TV and hear how some woman drowned all of her children in the bathtub. Or how some woman was shot to death because she took too long trying to decide on what Subway sandwich she was going to eat that afternoon. Or how some utter oxygen thief human gave birth to triplets and threw their newborns in the dumpster. Or how some of our best minds (globally) have now come up with some new amazingly efficient way to kill more people but leave buildings intact.
And then, in the midst of all those thoughts, I remember how we are just 1 planet among several, orbitting 1 star, in a sea of stars in our galaxy of 400 billion other stars, in a universe of atleast 400 billion other galaxies...And then I realize how God does indeed exist...And even though he is perfect, it took him quite a few attempts to get the recipe right. And how we were a very early batch.
