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.