How far away is tje CURE? ANYONE KNOW?

Go read the post below: Crohn's Research Symposium in Chicago August 16th (MAP) That's what they are talking about

I hate to be Debby downer but don't hold your breath for a cure. There is too much money involved in letting people stay sick and simply treating disease but not curing. Why would they want to kill those cash cows?

If a cure comes along, it will be accidental, imo.

I think the cure will be found because doctors are now beginning to pay much closer attention to intestinal flora.

I too think it will be found accidentally while doing research on the above.

I don't hold my breath for a cure either. I don't see there being one in my lifetime and half believe there will never be one. Crohn's is a crazily complex disease, and at the moment it's impossible to see where the cure is going to come from? Intestinal flora manipulation? Nope, gut flora is just one small part of the picture.

Absolute waste of time thinking a cure is coming any time soon, that's for sure. Maybe hold out hope for your grandchildren, but that's about it.

It's a waste of time if you hang around for a cure that has no guarantee of ever arriving, let alone in your lifetime. Basically, how many cures for diseases have been found in the last 50 years? Cures haven't exactly been thick on the ground in recent times, so I'm not quite sure why people are so convinced there is going to be a cure in the next 10 years or so.

Of course there could be a cure. I might win the lottery too, but I'm not going to make major life decisions on the assumption of winning.

I'm a lifelong Crohnie.
I don't know who I would be without my pain. Having Crohns is a huge part of my identity.
I'll take a cure for my fistula, but I'll keep the rest.

crohnie1985 said...
Hi,
This question does make you wonder, how much $ the drug companies rake in. There's all these great new medications, but They cost so much, the people who need them can't afford them, even if you have insurance. So who benefits even if they are available. Just one of my medications cost $8,500 per month.

Let's put it this way, the pharmaceutical companies have no vested interests in searching for a cure. Their interests are in developing new drugs which are a success commercially. Like these ones (note that Humira is #3 on the list): www.medscape.com/viewarticle/825053

That said, I certainly don't believe that the cure has already been found and the drug companies are sitting on it. I also don't believe that the drug companies have the power to stop independent researchers from doing their own research. It's just that drug companies have so much more to spend on R&D than any university department does, but their R&D goes on creating profitable drugs, not on searching for the root causes of diseases.

Whenever I've checked into drug assistance programs, we don't qualify either because we live above the poverty line, we have insurance (even though it won't cover the medication), we don't have insurance or IF our insurance has a certain copay (Exforge, my DH's med had a program that would do a $4 copay IF our insurance had a $50-100 copay, but our insurance didn't pay ANYTHING, so he didn't qualify) or some other reason. It's a not a straightforward thing and varies wildly, depending on the drug and where you live.

Though it does seem disadvantageous for pharmaceutical companies to find a cure for anything, I believe the majority of those scientists doing research, whether via universities or big pharma, are actually trying to better treat diseases or find cures. The researchers themselves are sometimes driven into their particular field of study and research because of a family member's illness. So I don't hold to the conspiracy hypothesis that scientists aren't trying to find cures or treatments. That's not to say that I don't find it horrendous that these newer drugs are outrageously expensive and out of reach for the average person because of the way the pharma industry does business.

If you think about it, what diseases have been cured? Communicable diseases have been controlled with vaccines/sanitation & nutrition standards. Occupational diseases have been better controlled by adopting standards in the workplace. Antibiotics, diabetes drugs, cardiac drugs, and such have made once fatal diseases controllable. Surgeries have made huge impacts in once fatal circumstances. Organ transplants, but even with that, it's a life-long struggle to prevent rejection.

But actual cures, especially for chronic diseases? I can't think of any, though there may be. But I still think the vast majority who've dedicated their lives looking for a cure or treatment aren't charlatans.

Also the patient assistance like RemiStart is a total scam and then some. Johnson and Johnson will offset the cost through a charitable association if you 'qualify' as low income... J&J is also the only contributor to the charitable association... Many people interpret this as them giving the drug for free or whatnot. This is not the case. The government or insurance company covers the majority of the cost anyway, so J&J only gives up a small amount of revenue (the difference between full retail value and what the government/insurance company will pay) which they get back in tax benefits from their charitable 'donations' anyway. It's unreal what these companies actually get away with if you really dig into it. There are a few different versions of the above that they have all cooked up so no one ever really goes without the drug if they 'need' it.

You just reminded me of the girl in the chair beside me at my first infusion. I was terrified... but she explained to me it was ok and how she has rheumatoid arthritis and taking Remicade for the last seven years allows her to work as a nurse. She said without it she cannot move her hands or walk easily. Was interesting to hear her talk about her disease and how much it impacted her life. I was like wow, that sound like how Crohn's effects my life in many ways. The guy on the other side of me was asleep and snoring within 5 minutes, was funny. I stayed up all night for my 8am infusion because I convinced myself I was going to die at the infusion from a reaction or something terrible, haha.

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Here is the so called 'charity' for any interested: www.jjpaf.org/index.html - Click on about Us and then Donor Companies.

The only people involved in the 'donation' are Johnson and Johnson Companies and they use this to balance out taxes, and off-set government insurance company payouts etc. so they win in all cases. Somehow they transfer the same thing to Canada and so on.

Does not matter anyway because it does help many get the darn drug. But in no way do they actually 'give it out for free' out of the goodness of their heart... These ******s have every angle covered when it comes to raking in the cash.

Post Edited (Canada Mark) : 9/14/2015 5:47:53 PM (GMT-6)

It's amazing the difference in how our countries handle healthcare. You can easily go into bankruptcy here in the US if you don't work for the government or a large business with top tier health insurance. People seem to wonder why some of us don't go to biologics, but for people like me, there's no way I can afford it on our insurance. Even if they GAVE me the Remicade, I couldn't afford the infusion expense. Hospitals and clinics can charge pretty much anything they want to here and it's up to the individual to fight for a lower price. I did that with my medical expenses when I was younger, and I don't have that kind of fight in me anymore.

I don't get it with my free box from Humira, I pay for a box via ABC (the copay) and that's just how it works, the airmiles add up quickly due to the price of Humira and I get to use my airmiles when I use my ABC to pick up my Humira or my hubby's benefits, which just maxed out (and paid a copay when using hubby's benefits) so now I'm back to getting one box via Progress and one via ABC every 2 weeks cuz I inject every week so I only get to use airmiles when I get my box under ABC due to paying a copay.