Re: Action alert before Congress for IBS

[Guest guest]

>

> Some of you might be interested in calling your congress people to sign on to

this

> legislation:

>

> http://www.iffgd.org/site/advocacy/legislative-alerts/action#natlres

>

>

> National Research and Treatment Act

>

> Please contact your Members of Congress and urge them to become original

cosponsors of the IBS and Functional GI Disorders Research and Treatment Act.

> The IBS and Functional GI Disorders (FGIDs) Research and Treatment Act is an

invaluable piece of legislation to the IBS/FGID patient community which would:

>

> Expand the research portfolio for IBS and FGIDs at the National Institute of

Diabetes and Digestive and Kidney Diseases, and improve coordination of research

activities conducted by other entities at the National Institutes of Health.

> Establish a data system to gain a better understanding of patient populations

and identify at risk individuals.

> Establish the development and operation of centers to conduct research and

training to health care providers on IBS and FGIDs.

> Establish an IBS and FGIDs information clearinghouse to improve public

awareness and professional understanding.

> Provide support for training new investigators who specialize in IBS and

FGIDs.

> Facilitate creation and implementation of a guidance document by the FDA for

industry regarding the development of treatments, and the consequences of

adverse events that may occur during post-market surveillance.

>

> To me, expanding the research portfolio sounds good as well as increasing

professional understanding.

>

> Some of the rest of it though, sounds like it could add

> a lot of bureaucratic red tape - like a guidance document by the FDA regarding

the development of treatments - I could see that getting really problematic - if

doctors and insurance all insist you stick to the letter of the kind of

> treatment they propose, especially with national health care on the horizon.

I think it could be used by some doctors to curtail freedoms. We've already

heard stories from some people about doctors who are mini-tyrants in this kind

of way.

>

> So my reaction to it is mixed, FWIW,

>

> Mara

>

Mara,

I share your concerns about this possibly being used against us. The system is

greed-driven, and concern for the patient's welfare is not top priority.

One informative discussion on the realities of government and charity funding of

disease research was in The New York Times that came out in April of last year.

This was primarily concerned with cancer research, and the Chief Medical Officer

of The American Cancer Society was quoted as saying that " No one wants to fund

wild new ideas. " He said that all such research was timid or overly cautious.

In other words, if you're looking for the discovery of new therapies for

treating or even curing our most serious diseases, there's no point in looking

there. One research project funded by cancer money sought to determine if people

with efficient taste buds were more likely to become obese. Another project

mentioned was a study to see if the same therapy that might be used to treat

colon cancer might also be used to treat breast cancer. The problem was that

there was no therapy described or even mentioned.

It seems that most research funding simply goes to reward those who do as

they're told. There are a few valuable studies going on at some of the smaller

universities. They're just hard to find.

Les