Tuesday, February 9, 2010

G-PACT vs. John McCain? Or McCain vs. Cures?

This is a guest edit from Michael Smith of G-PACT, the Gastroparesis Patient Association for Cures and Treatments, taking Sen. John McCain to task for opposing earmarked funding for gastroparesis, a paralysis of the digestive tract. Smith, a lawyer in New York City, describes himself as a longtime McCain supporter who is nonetheless angered by McCain's opposition to gastroparesis funding.

Note to Senator McCain: Not all earmarks are equal--equally bad. Some earmarks, in fact, are good. The challenge is to know the difference. But let Smith make his case:

Over the last two months, the digestive motility community has been in an uproar over a series of comments made by Senator John McCain with regard to a federal budget earmark of $665,000 for use in irritable bowel syndrome research taking place at Cedars Sinai Medical Center in Los Angeles. The research was actually to advance groundbreaking work being conducted by Dr. Mark Pimentel of Cedars, studying the interaction of the immune system with the human digestive tract, and how certain antibiotics could be marshaled to restart a failed digestive tract.

Unfortunately, Senator McCain’s comments lacked any forethought and insight and included the following:

December 12th-“$665,000 for, I'm not making this one up, for the Cedar Sinai Medical Center in Los Angeles California for equipment and supplies for the Institute for Irritable Bowel Syndrome Research. Now, I have a lot of comments on them . . . on that issue . . . but I'll just pass so not to violate the rules of the Senate."

December 13th-"Another (spending project) that I have been unable to describe adequately without violating the rules of the Senate. $665,000 for Cedar Sinai Medical Center in Los Angeles California for equipment and supplies for the Institute for Irritable Bowel Syndrome Research. The only thing I can say is that problem will not be reduced when people read this legislation, so there may be a need for it. The list goes on and on, it is crazy stuff."

Feb 3, 2010—On the Greta Van Susteren show, "On The Record," Senator McCain compared funding for motility research to funding for the US Census Bureau’s purchase of an ad during this past Sunday’s Super Bowl.

On a personal basis, these comments left me incredibly divided; as a lifelong supporter of the Senator’s, I was a supporter of his record and his dramatic recovery as a POW in Vietnam resulting the heights he has gained running for the presidency and as a tiger of the Senate. Being from Long Island, and having been President of the Republican Law Students Association in a law school where my Con Law professor sued Richard Nixon with regard to use of the Pentagon Papers, my respect for McCain was enormous.

However, after suffering from paralysis of the digestive tract for 22 years and working for a cure over this time, I can’t help to think that Senator McCain simply did not take the time to do his homework on this issue. Unfortunately, the need for government research funding for motility research for an amount that the Yankees would normally spend on a utility infielder has been caused by a complete market failure with regard to the US medical research industry’s ability to navigate the shoals of Washington towards a solution for digestive tract paralysis.

Large Pharma companies, most specifically Novartis and Johnson & Johnson, failed in attempts to manufacture medications that resulted in saving thousands of motility patients lives, as a result of FDA and class action lawsuit intransigence resulted in such drugs being banned from the US market. Small Pharma’s attempts at developing the next generation of such medications requires a liferaft to navigate the dangerous waters of being able to satisfy federal regulators and grow, through the worst economy in 80 years. Attempts to develop stem cell research that would regenerate GI nerve and muscle tissue are bracketed by Republican fear of violating the sanctity of human life (which is an issue that can be worked around through new developments in the use of adult or autologous stem cells) and Democratic fears that not even a microscopic risk of a side effect is insufficient to prevent a treatment from being able to see the light of day.

Despite these difficulties, advocates for the motility diseases have worked over the past year to build productive working relationships with agencies of the Federal government where we can educate them about our need for effective treatments while they guide and educate us with regard to the justifiable concerns of the risks of medical research. However, after working for nearly two decades for such developments, the recent statements of Senator McCain have presented a crushing blow to the hopes and dreams of patients suffering from digestive tract paralysis throughout the United States.

If I had a chance to speak with the Senator, I would say, "Senator, while appreciating your fervor against endless earmarks which could threaten to being down the US economy, what about the loss to the US economy of five million individuals who cannot hold down jobs, who cannot support families and who require public assistance to function because of digestive tract paralysis. Why do you value the contribution of these individuals in much the same way that you value $819,000 in catfish genome research in Alabama?" (See link here.)

If you can help us navigate the shoals of federal regulation which has served not to permit a valid new treatment for digestive tract paralysis on the US market for nearly 40 years, we would be more than happy to work with you to ensure that all research funding for these conditions occurs privately in a manner that will not cause you to believe that patients suffering from digestive tract paralysis are bringing down the US economy.

While we appreciate your continued fervor to make sure that Iran does not have a better credit rating than the United States within 10 years, the way to do that is not by harming whatever little research is currently being done to prevent the failure of an entire organ system.

It is my sincere hope that the maverick in you does not seek to follow the ways of old Washington; to block the hopes of Americans simply seeking a better life; if Federal government funding of research to treat and cure digestive tract paralysis is not a way you intend for this nation to go, then instead of following the ways old Washington obstructionism, show us a third way, convene a conference of doctors, patients and other stakeholders so that we can say that John McCain was the hero who helped to lead patients suffering from digestive tract paralysis to a brighter day, for we have tired of the endless dark nights.

And of course, the Republicans, as a party, should know better than to get themselves crosswise of the cures constituency. We know that the Democrats have done so in the last year, thank to their scarcity agenda.

But now that Republicans are again gaining strength, we will see if the GOP has figured out what sells, and what doesn't sell in healthcare politics.


  1. Bravo! I voted for McCain and have always considered him a hero. My 2.5 year old daughter suffers from chronic intestinal pseudo-obstruction and I felt like he was almost making fun of her with his comments. I couldn't believe it.

  2. I wonder if John McCain would feel different if the money was going toward cancer research? I know that he has battled that himself on a personal level. I wonder how he would feel to not be able to eat like a normal person without worry of feeling sick afterward or not to be able to eat at all. My grandmother said never judge a man till you walk a mile in his moccasins. Well Mr. McCain I am really to walk in your shoes, are you ready to walk in mine?

  3. In the past five years, I have lost about 85 lbs without trying. Nausea, abdominal fullness, gagging, vomiting, pain, bloating, etc. Really, this is what I deal with every single day as I struggle to maintain my weight so I can continue to work. I have to work because my husband was laid off and is in school full time. He can't find a job anywhere in Maine. In this economy of increasing cost of living everywhere and now only my income to hold us down, how do I continue to go to work? There are no more treatment options for me. And, I am only 28 years old. Please think about this...just for one minute.

  4. I am shocked to hear this kind of disregard for a common illness (gastroparesis and IBD) from someone who is generally rational (although penny-pinching) with funding medical research. Sen. McCain's attitude towards this all-too-common disease is ridiculous.

    Sen. McCain: Beef might be what's for dinner. But for those of us with gastroparesis, we have to deal with it at breakfast as well. Literally.

  5. McCain is attempting to exploit a disease for political gains at the expense of millions of very sick people simply because IBS and gastro failure are not widely understood and sound funny. How cruel, crass, and juvenile of McCain. Politics are literally keeping people sick b/c the FDA refuses to approve new drugs for motility disorders, and to add to that set back McCain has decided to make gastro motility disease his whipping boy.

    Thank You John McCain for being such a fine human being.

  6. Mr. McCain perhaps if you looked further into what Gastroparesis causes to human life, you might change your mind, as a person who respected you, I think you need to investigate what a devasting illness this is and not use it as a joke for unwarrented earmarks you are. My daughter has suffered with it for 3 years now, she once had a life,a job, and a smile, that has changed. Would you make a joke of research for cancer? I don't think so.

  7. Dear Mr. McCain,

    I am sitting hear crying, to write down my feelings, all I can ask is that you look really take a look and see how we suffer, I can not longer work, I got down to 82 lbs and now live by feeding tube. I would love to eat, all the medication and shots I have to take to just have a good day, which is far and few between. I had a life.. Your are a "Hero", and I thnak you for serving our great country all I ask is that you please get all the facts.

    Thank you,
    Stacey Cowell, NJ

  8. As a sufferer of Gastroparesis I understand the thoughts and feelings that people have expressed here. I am not a fan of John McCain, however, he is one of the very few in Washington that has never supported earmarks. His comments that he made were definitly uncompassionate and it made me angry as well to disregard motility disorders. This bill is an earmark and I as a taxpayer do not support this type of funding. However, I think if we can get a message across maybe we can get a bill sponsored specifically for this very disease. There are many road blocks and one specifically is the FDA. Why is it that there has only been 1 drug to specifically treat gastroparesis in the past 20 years? Blame it on the FDA...this is where the grass roots efforts need to take place and make our voices heard! The funding that this $$$ would go towards would be research on a new antibiotic to treat IBS with an overgrowth. Before people make a comment they need to read the entire bill that was presented and the research that is needed to be funded. We need more research as in the causes of Gastroparesis and it is time for people start. Look at the Breast Cancer Awareness movement...they too started at the grass roots level and look at where they are now..All of the money that they have raised is from private donations. How did they get private donations...by increasing awareness. It can be done!

    -Andrea, Maryland

  9. 5 years ago my sister came down with "the flu." But it didn't go away. 18 months later she had lost 85 lbs. and her organs were shutting down. She lives today via "TPN" (total parenteral nutrition)..fed through a tube inserted into her chest which is inserted into the Vena Cava of her heart. She "hooks up" nightly to get her nutrition in order to survive. A "good" day for her is a HORRIBLE day for a healthy person. Her entire intestinal tract does not operate. Her intestines and stomach are now in complete failure. Senator McCain, try living for a day with 3 tubes in your body...all of which are necessary for survival... Our family lives with constant "tears in our hearts."

  10. It is easy for someone who does not know of a condition to make comments about it as Sen McCain has.

    There is an old saying "a little information is a dangerouns thing".

    What does he probably know about gastric mobility issues? That it is a stomach ache... that is probably the long and short of it.

    The sad thing is that we really can't blame him when if you ask the average nurse or doctor about a condition like gastroparesis they will probably know nothing about it... I was even told by one ER doctor that my gastroparesis was nothing more than 'severe gastritis' and that I just needed to go on a bland diet for a week or two and would then be fine! If many of our healthcare professionals do not know about this condition how can we expect our elected officials to uderstand the impact?

    If you go to the NIH site and type in "gastroparesis 2004" you will be directed to a PDF of the minutes of a conference held at the NIH on April 4, 2004 where-in the number of an estimated 5 million Americans are affected.

    If you go to Medscape and search Gastroparesis you will find information from 2008 where the number is stated at 4% of the population being affected, with current census numbers that places it around 13 million people.

    Awareness is a must... the problem is getting the information out to the Medical profession first so that diagnosis can be done quicker (mine took over 20 years!), then to the Politicians because when Dr's know how common it really is and how little there is out there to treat these conditions they will push those representatives for pharma companies that visit all the time handing out clocks and notepads for new drugs... and the pharma companies will then start to scramble to get into this virtually untapped field...

    As for McCain... shame on him for making a mockery out of the suffering of so many Americans, ignorance is not an excuse.

  11. I listened to the Greta Van Susteren interview and it is my understanding of McCain's statement he was referring to $2 million Super Bowl Ad as bad spending and $2 million on IBS Study as good spending. He was talking about Americans wanting accountability. I will admit that I do think he could have made his point a bit clearer to understand.

    Just my opinion and yes I suffer each day like so many.


  12. I have SEVERE Gastroparesis for over 5 years. Presently I am on a feeding tube for 16 hours a day. I have been unable to orally consume food in almost 2 years. This disease affects not only the patient but all loved ones as well. We have no quality of life, ridiculous out of pocket medical expenses, etc. It is a constant struggle to get thru each day; it’s like having a severe stomach virus 24/7. Our feeding tubes, supplies and medication are our life lines. Cutting motility funding is pulling the plug on our life support.