Adam – founder of iHaveUC, diagnosed in Oct. 2008, controlling his UC with diet since 2009 (click on the picture to learn a bit more about him)
Hey UC’ers,
I am often a bit on the skeptical side of massive corporations (and yes, even large scale research organizations/hospitals) with regards to their motivations or underlying goals with what they are up to, and especially with regards to ulcerative colitis research and news.
But, I must say, yes indeed, there is some good information out there, and using your own brain to determine what is quality compared to what is PII (pharmaceutical industry influenced) isn’t always easy. Just remember, the pharmaceutical industry made billions of dollars from ulcerative colitis patients last year, and as the disease continues to increase in prevelance…well, you can do the math.
So needless to say, I’ve tried to weed through the useful info we can all benefit from and I’ve come up with these videos.
This is Dr. John Kisiel (a Mayo Clinic gastroenterologist) who is talking about the risk of cancer for both Crohn’s disease and ulcerative colitis.
This video below is of Dr. Loftus, another gastroenterologist with the Mayo Clinic. He is talking about a topic that I am guessing is going to more and more coming play with UC’ers who are using biological medications. There are “generic” versions for lack of easier explaination of a biosimilar that are making their way into the authorized/marketed status with both the FDA and European Medicines Agency (along with other parts of the world), and this has the ability to both lower the cost, and increase the access to these relatively new medications (for better or worse):
Dr. Sunanda Kaye, M.D. talks about a study which has been funded by the CCFA (can you believe it the Crohn’s and Colitis Foundation of America is funding diet research!!!! WAY TO GO….fingers crossed there is no funny business involved:) either way, I’m hoping some of you like this, yes, Crohn’s Disease for now, but still good to see:
One more from Dr. Loftus, where he talks about a “hot topic” and that being Fecal Microbial Transplants (FMT), something we have talked alot here on the website:
The Mayo Clinic for those who don’t know, is a well respected medical institution, by many…
William Worrall Mayo (founder of the Mayo Clinic back in Minnesota, his sons would continue on with the medical practice that turned into today’s Mayo Clinic)
Actually, I would encourage you to read the wikipedia page about how it began, the founder, William Mayo, quite an interesting guy, he cruised over from England and settled his family in Minnesota and began what is now today the arguably best/leading institution for gastroenterology research and innovation.
I did a bit more research into any potential conflicts of interest between the Mayo Clinic and they pharmaceutical industry, and of course there was some very slight mention on their corporate(non profit) webpage, it goes something like this:
Conflict of interest
Mayo Clinic and its staff often collaborate with industry to improve patient care through research agreements, invention licenses and consulting activities. The Mayo Clinic Conflict of Interest Review Board oversees all such activities. Mayo Clinic and its staff members do not receive any royalties for inventions or technology developed at Mayo and subsequently prescribed for Mayo Clinic patients.
If you have questions about Mayo Clinic industry relationships, please ask your physician or contact the Office of Conflict of Interest Review at 507-284-0075.
Another big congrats to William Mayo, his organization is apparently doing pretty good, by the numbers posted on the website, this non-profit medical and research organization did:
Financial information (in millions)
- Total revenue from current activity: $10,315
- Income from current activities: $526
- Contributions from benefactors: $277
It actually looks to me like this non profit did about a half billion in profit, great right?(you can check these figures out here if you think this is a joke: http://www.mayoclinic.org/about-mayo-clinic/facts-statistics )
In some sense, I’m not totally surprised at all, there was a time where I visited the Mayo Clinic campus in Arizona several years ago, back in 2009 when my UC was finally under control, but my side effects from humira were scaring the crap out of me. This was back in the relatively early days of humira for UC patients, as it wasn’t officially approved yet, and I was taking it more on an “early access” type of program as the remicade failed. But bottomline, when I arrived for my 2 or three day run through at Mayo, I was impressed/shocked in some ways with how many diagnostic exams they put me through. I’m talking just about everything, heart, blood, nervous system, you name it…and the bill came out to…well…it was a 5 figure number, let’s put it like that.
Enough of my rambles, I hope the videos above taught you something and have a great rest of your weekend,
Adam
I started site shortly after being diagnosed in October of 2008 with severe pancolitis (when my whole colon was inflamed).
For me, it was a very rough start with severe symptoms. Getting bounced from medication to medication was not easy or too helpful. But, I did meet another UC’er, changes several parts of my diet, and of course the rest is history.
Leave a comment, ask a question, take advantage of our past experiences here, use the search boxes, they are your friends to0:)
I’ve written 2 different ulcerative colitis ebooks, you can check them out here.
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