Anyone else sometimes feel like they're keeping us sick?

Simple, I'm mad and bitter towards my disease, I'm frustrated with researchers for not yet finding a cure in this day and age, I hate the pharma companies because they simply are crooks and take grat advantage of the sick.

My copay is $25, my point is that the company that makes Asacol GETS $600 for a month supply. How is that a reasonable amount of money for a service rendered?
Most products are priced on what the market will bear -pharma is based on lobbyists that have access and therefore control which lines their pockets and guess who has to pay for all this?
The whole system is very messed up.

ok, you may be a researcher, but that is different from being a pharmaceutical company.  big pharma DOES NOT WANT A CURE, and YES, YES, YES they ARE in it for money.  they are NOT in it for healing people or being ethical. it is ALL about the bottom line.  sorry, but you have blinders on.  i am sure there are some researchers out there who really DO want to find a cure.  but big pharma and corporate america usually funds all research.  and again, they are ONLY interested in MONEY.  period.  they do not want a cure, because then they would not have repeat customers.  it's business.  just like they don't make air conditioners that last as long as they used to because they want people to buy more QUANTITY!  ok! it's about big business baby!  and like a previous poster said, with all this technology and knowledge that is out there, there sHOULD be a cure.  it seems the resources are out there if only research was allowed to concentrate on getting to the bottom of this.  and dr's are too busy to do anything but prescribe what big pharma tells them too.  and by the way, removing one's colon is not a cure.  if you still have a rectum as in jpouch surgery, you can still have uc in your rectum and have to take the poisonous drugs.  and removing a colon is not simple.  my uncle almost died from the operation.  plus there are many complications one can have in their lifetime from having a jpouch.  yes, i am bitter, because people's motivations are not honest when it comes to any disease.  you are delusional if you think everyone in the business gives a sh&%t.

kate22, you write as if there were people preventing others from doing the research to find a cure. If there are researchers out there who have an idea to work on, all they need to do is find funding. The funding comes from corporations, venture capitalists, private individuals and government. So which one of these sources is holding research back? All of them. Why? Because there is no reasonable expectation of a profit. Is that bad? For you and me, yes. For the world? I can't say. But those are the facts. This is how the world works. Life is not fair. Sometimes that really sucks.

I had a friend whose son died at age 12 from a rare and unpreventable genetic disorder, the same one profiled in "Lorenzo's Oil." It is inherited through the mother and generally only kills boys. She had 3 sons. When the first got his diagnosis she tested the others and one other of her sons was affected, but young enough still to perhaps survive if a cure could be found. She and her family and friends had incredible connections among wealthy executives and brilliant scientists. They put together a foundation to support research into this condition and aggressively publicized their plight. They succeeded in finding a treatment for her other son, but not a cure. He still survives at age 16, but he's in a wheelchair and I don't know what his prognosis is. Their foundation still exists as far as I know and funds basic research, but the beneficiaries of their work will be later generations, not her own family. I'm sure she'll find satisfaction in whatever develops. But the final development will undoubtedly be by a corporation that has the assets (like laboratories and financial resources) to fully develop, test and market a drug. And it will be expensive, because the rarity of this condition is such that only a few people will ever end up paying for it. All of the years of work will have to be paid for by the profits from the marketing of a drug, and that will have to happen in the time it takes from when that drug hits the market until its patent expires.

"all this technology and knowledge" does not make a cure happen. Hard work makes a cure happen. Hard work by a lot of people, over many years. And then you have to pay for that hard work by pricing the drug so that enough people will buy it, or enough insurance companies will allow it to be paid for.

There are problems in the pipeline that companies have to run through to get enough testing done to get FDA approval. There are problems in designing proper research protocols to demonstrate a drug works as advertised. Both of these situations add to the expense of drugs and reduce the efficacy of the ones we ultimately are offered. Focus your anger on productive changes to see positive results.

This needs a longer response than I cna make now, but I thank Malkavian for resisting the proposal that big corporate pharmacy compaines and doctors and medical researchers and biology profesors are all the same thing and speak with one voice and have one agande. That is simplistic an silly.

I have been reading medical literatures since getting UC and I see plenty of research stretching back over decades, with some advances just a few year away (hopefully.) It is just a much more laborious process than most people can appreciate.

Some motivations and realities are out of wack in our for-profit medical system, but there are may different actors, and many many with only the best intentions.

I hear IBD is not very common among African's or in third world countries. It tends to be a Western culture thing or if you're of Jewish decent... So I've read.

There's a lot of research written about IBD indicating it's a disease only of the developed world. I haven't read the arguments at any great length but my bet is that people in the third world are suffering from so many minor health insults that it would be impossible to tease out the IBD. For example, if you chronically have diarrhea and everyone around you has diarrhea because the water is contaminated, or everyone has intestinal parasites, when exactly are you going to get diagnosed with IBD, and would it even matter if you were? Is your child's growth stunted because of poor nutritional uptake due to inflamed bowel or rampant malnourishment because of famine? Are your random fevers due to malaria, UC or both?

One of my grandmothers had chronic bowel problems. She lived in abject poverty from birth through young adulthood. She was one of 6 children, three of them boys, and of those 3 boys none made it past 5.5 feet in height and all of them died young. Did they have Crohn's like me? I have no idea.

LOL, me too pb - Used to let those mud pies bake under the sun to give it that artisan touch xD

Yeah I guess I don't have to buy the really expensive drug but claiming that choosing between buying something or getting really sick is a choice is idiotic.

There is definitely a problem in a system that rewards expensive maintenance medications and permanent patients over cures especially cheap ones. That's the world of capitalist health care. UC is currently a $1.7 billion/yr drug market and is projected to grow to $3 billion/yr by 2020 in the industrialized first world.That is just about controlling symptoms. How much is spent on pure scientific research on the disease itself? A free market system has what incentive to do this? Not much.

$3 billion by the way is $10 for every man, women and child in the country.

I do not actually blame drug companies or the people that work for them. It's a problem with the health care system and how it is funded and directs funds. It operates to make money not cure disease or relieve symptoms in a cost effective manner. The heroes are renegade doctors and researchers like the guy that cured a good portion of peptic ulcers with antibiotics. They are punished financially for trying in our system. I hope that we can move to a system where you pay to stay well and HMO type health providers are financially rewarded for finding cheap cures because they won't have to buy the expensive drugs.

I think you're exactly right, AZYooper. There is no profit in a cure. That's what gov't research could do for us - develop a cure outside of the commercial enterprise that needs to make a profit. I'd love to see our scientific institutes better funded to do that.

Yes, government research and system that pays health care providers for healthy patients not testing, drugging and treating. The drugs we take are very expensive and commonsense would tell society to spend a lot of money to change that. Our healthcare system rewards inventing new and more expensive treatments and drugs. Competing HMOs with patents able to choose would really help. What is really sad is that is that much of the "independant" research done at state universities is funded by drug companies and beholden to their interests

Just look at the 5ASA drugs. Very expensive and they are spending a fortune to create new drugs like Ascol HD and Giazo that are nothing but a bigger pill. What a waste of resources and money

Giazo is Salix's new Colazal horse pill. 1100(?) mg instead of 750mg.

I can normally swallow pills dry but not colazal. I have swallow them with food or the gelatin sticks in my throat.

They haven't got final approval from FDA and hopefully they won't.