I apparently opened a can of worms this morning on Twitter when I said a cure was a laughable matter. In my opinion I do not think a cure for anything, including CF, will ever be found. I have two reasons for thinking this. One being financial gain and the other being what a true "cure" really is.
****** Before I go on, please remember. THIS IS MY BLOG therefore MY OPINIONS. No one is right, no one is wrong. We all have different views on everything. Please respect this. Any negative name calling comments to me, or to anyone who responds will be deleted. If you want to be rude, at least show your face and don't post as anon, or if you do, leave your name. *******
Let's start with the latter - what a true "cure" really is. This will vary for everyone. Some people feel that just being able to treat the disease effectively with meds, and allowing the person to live to the normal lifespan is a cure. I don't see it that way. To ME a cure is eradicating the disease. Wiping it out so it no longer exists. This is not possible for many many diseases, maybe even all of them. CF for example can never be wiped out unless every single person who procreates is tested and allows their unborn fetus to be scientifically "created" so no CF genes are carried on. The money required for this is outstanding. Not every single CF carrier or CF patient can afford this. Once that person is born with CF, they are going to have CF in every single gene of their body until death. CF is genetic, it is written into our DNA. Unless we can totally change every single gene in the body and "fix" that one malfunction, we can't sure it. And even if that gene is fixed after the child is born, there is some damage done. That damage starts from the beginning...maybe that child would have been heavier at birth. Maybe that child had MI when it was born which lead to the diagnosis, and now the damage from that is there. Even if they were to be "cured" of the gene, the damage is done; yes insignificantly perhaps, but it is still done.
We can carry this through to other diseases. Let's use Cancer as our next example. In a way yes it is partially cured as is. We can remove the breasts of a woman with breast cancer and she is essentially cured as long as it hadn't spread to any other organs. We can remove the tumor filled colon and that person no longer has colon cancer. But they can still get cancer, in other organs. Cancer has not been cured, that person has just been ridden of the disease for now. It may come back and kill them, or something else might, no one knows. But as long as cancer exists, it is not cured.
My other line of reasoning for why disease will never be cured, is that there is too much money to be gained from the meds used to treat diseases. CF alone has a HUGE financial gain factor. A months supply of Cayston is $5000.00. Where that money goes I have no idea, but I highly doubt the owner of the drug company drives a used Saturn and lives in a two thousand square foot home. Why would he/she want to give up their lifestyle when a cure is found and those meds that support that lifestyle are no longer needed. Yes the medical field, research etc is supposed to be about helping others, but if you think that no one is in it for the money you are naive. This country was founded by the rich for the rich (whole other topic) and anyone who can take advantage of the opportunities that the country offers. Supplying medicines and technology for those who medically need it is just another business, like cars or clothing. Only thing different is lives are at stake.
I am well aware I may lose some friends for posting this. Some of my followers may decide I am a ruthless, cold hearted bitch. That's fine. Like I said in the beginning, this is my opinion. Maybe I would feel different if it was my child with CF and not me. I don't know. But this is how I feel as of right now, just me and my unscientific opinion. A cure may be found, and I hope I am proved wrong. Believe me, its not that I don't want them to find a cure, its just that I don't think they will.
Amy I just want to {{{HUG}}} you. <3 I totally agree with your thought pattern on your blog.... I think there will be a slow??? Even a significant one for some people. I pray you get more comfort and lots more slowing of this stupid disease VERY soon! And don't worry, we are ALL entitled to our opinions. Yours is a good one and has great merit.
ReplyDeletec-c-c-cold hearted snake, look into her eyes - oh oh, she's been telling lies... (a la Paula Abdul). Totally j/k.
ReplyDeleteI couldn't agree with you more. I have never believed in a cure for CF and nothing I can see has ever really been cured. Vaccinated against, sure. Put into remission, yup. But cured? Nope, but by my definition (and yours).
It actually drives me a little bonkers when people say "let's make CF stand for "Cure Found" (sorry folks, you might have to hate me too here). How 'bout instead we make it stand for: Curtailing Flare-ups? (that's kinda weak, but you know what I mean!). I think it's a wasted effort raising money for a "cure." Research is important and all the strides made in new meds do help us (most the time), I would never say that all that is not important. But what people, especially those not directly invoved with the CF community, don't see is all the CFers who need help while they are still living with the disease uncured? How about more resources to help people buy those $50000 meds, the living expenses for TX (for TX itself as we see happening in AZ, the day to day expenses that a disease like CF wracks up??
First, I think it would be sad if you lost friends over your opinion, although I must say that I have lost many of CF "friends" over mine.
ReplyDeleteAnywho, I agree with most of what you lay out here, except I'm not sold out on the fact that it's a conspiracy to not cure CF because of money. Plus, if you were to have to point fingers, it would have to be at the CFF for not funneling more money towards "a cure". Which, for those that follow where the CFF pits their money, has been going further and further away from what most would call an actual cure ie gene therapy. With that said, I think it was a great move by them because of all the problems experienced with gene therapy in the past. They saw it as throwing good money after bad, which personally, I agree. They've focused on treating the symptoms and the cells of a CFer. So far, it's proven to be a good choice with all of the promising drugs on the horizon. May not help old farts like us, but if they can make CF a different experience for the generations to come, then I say job well done.
Provocative blog, thanks!
Growing up my whole life, my father would tell me the same thing. There's too much money in treating cf they'll never cure it. I believed/ believe him. Even if they cure DID cure this disease and my lungs weren't too damaged to function normally I would still have all the emotional stuff this disease has brought along. I can understand how parents of young cfers could view this as negative though they've only been part of this cf world for a short while and the meds and life expectancy weren't the same back when we were growing up. When I was diagnosed my parents were told that I wouldn't live to see 11. Now there's all this talk about gene therapy and a cure in the near future.
ReplyDeleteThanks for posting this cysta!
Instead of posting a comment-comment, I'm going to post a relevant comic. I like comics, and this one is perfectly suited to your topic. Also, I did want to say that I rarely, if ever, read blogs, but even if I read every word you wrote, I highly doubt you could ever say anything that would get me so fired up I'd eradicate you from my online-community/life. Unless you were being an asshole, I guess, but you are one of the least assholish people I know online OR in person. ;) (Seriously, you're a sweetie, I love ya)
ReplyDeleteComic: http://www.phdcomics.com/comics/archive.php?comicid=1162 Enjoy.
Sevenstars/Sandy
I've heard "a cure is coming" for my entire life. I will never give up hope that someday it will happen. Never. But like your well thought out and respectful, blog post (and many of the comments that have followed it), I tend to agree with you:
ReplyDeleteImproving the quality of life by supporting several reputable orgs in their quest for new drug therapies or to provide financial assistance and support for newly diagnosed families is a more reasonable goal.
I choose to not think about the conspiracy theory that "diseases will never be cured" because of financial gain. Maybe that's a "duckies, bunnies, and rainbows" kind of approach, but I truly want to believe that people have the best intentions and the common good of the world in mind.
P.S.- I've heard the Amy S. in CF circles before, but have never had the pleasure of meeting you or reading your blog. I look forward to catching up on all that is Amy and hope we can connect soon.
Great post and Peaceful Things,
Josh from Joshland (a new follower)
I agree with you on all of this. I think the only way to really cure CF with respect to your definition is to get people who are carriers to stop breeding. Basically we need to evolve our genes to not have CF or other genetic diseases in them anymore. But I think people today are actually making it worse. People who know they are carriers are still having kids. It always amazes me when I look at my friends list of FB and many many of my CF friends have siblings with CF. I'm sure the parents want a cure to be found. Well the first step to a cure is to stop propagating the disease. The first kid is fine, you didnt know, but there is really no good excuse for knowingly having a second kid with the disease. Youre just spreading the genes around and creating a bigger pool of CF genes. I think really we're going backwards with that regard.
ReplyDeleteThank you everyone for the comments!!!!
ReplyDeleteI guess I could have furthered this post by saying that I think CF will one day be like Asthma and Diabetes. Treatable and livable. I expect the life expectancy to be "normal" one day and not be the "death sentence" that it is today.
I like the CFF's slogan "adding tomorrows". It is quite accurate. That's what they do. They have added tomorrows to all if not most of us commenting here (or children).
I guess maybe now cure is used for most fundraising because it is easier than saying "let's find a way to make people live longer and better lives with this disease". Saying "let's find a cure" is much simpler :)
Hi Amy, Thanks for the blog post. I posted on Facebook. Only thing to add here is that after being angry realizing there would not be, what I would call a "total cure" for CF in my son's lifetime, I did always hope for an "insulin" type drug that would help you all live longer, healthier lives. I can remember still using the same term "cure" but I guess it just meant something a little different than years before. I can remember saying things like, "You have to stay healthy so that when they find the cure you don't have lots of damage that is irreversible." I knew that damage was damage and would stay. I had hoped that something better than polmyzyme would come and work the way insulin does in some people. That became what I meant for a cure.
ReplyDeleteAppreciate your thoughts and the feelings and thoughts shared by everyone. Blessings.
Loved this post Amy. Great points; I've always thought along the same lines. Some people call it negativity (the ignorant), however we know it's actually just being realistic (as people like us understand how this world works).
ReplyDeleteHaven't talked to you in awhile on msn, but want you that the few times we've talked always helped me feel better (as we are in similar shoes).
Jess
Amy,
ReplyDeleteCouldn't agree with you more. Mel and I used to have long talks about this very thing. We both agreed with what you are saying. There has never been a disease CURED. Never. Yes, they live longer, but not cured. I don't believe in blowing sunshine up my daughters (you know what)either. I don't tell her...yes, there is going to be a cure. I tell her that better medicines are being made to help her live healthier. Obviously, she is 6, soo we don't talk about death or heavy subjects like that anyways.
Very good blog!
Take care of YOU and hope you are feeling ok right now!
Hugs,
Jada
Amy, Even though I wasn't diagnosed with CF until I was in my 40s, I totally agree with you regarding a "cure." I didn't experience the emotional roller coaster that many older CFers who were dxd as kids got to ride, but I have been exposed to my share of hype and disappointment in many other areas of live over the decades...
ReplyDeleteI think it's a reflection of having been handed more than one dose of reality, rather than the naivety of unbridled youthful optimism. And I couldn't agree with you more!
Great post and great comments. My son with CF is 9 yrs old. When ever we do a fundraiser he asks if there is enough money for a cure yet. Kinda breaks my heart. He already will tell you that there will never be a cure. I tell him the same things as some of the others that they are working on new meds to make things easier. Thanks for posting. Very interesting...
ReplyDeleteJulie
I also pretty much 100% agree with your post. I believe in HOPE more than a cure itself. Hope and determination got me a lot farther in life with my CF lungs. I also don't like the idea of "I can beat CF" either, but I think that may be because I believed I could. . .only to be hit with reality. With that said, I lived a much longer, healthier life with the attitude "I could beat CF" so I would encourage others to think the same as I did. Hope, Determination, and a good fighting attitude all helps when dealing with Cystic Fibrosis.
ReplyDeleteI just might have to elaborate on this on my blog. Thanks for the inspiration. :)
I agree. I work in the natural health arena and see the reality of health research in every area. Unfortunately someone has to fund research and someone has to make money from the findings of the research. This is why so many 'natural' products that gain popularity on anecdotal evidence will never be subjected to empirical testing, which is sad. Nobody is going to, for example, pit a lifestyle intervention against drugs for depression because who is going to make bazillions out of exercise, healthy diet and less stress?
ReplyDeleteYou blog is great. I found it by hitting the 'next blog' button - something I like to do on a Saturday night if there's nothing on TV. X