Beverly J. Doucette
Adhesion Related Disease
2314 Carney Avenue
Marientte, Wisconsin 514431
Dr. Frank A. Hamilton, M.D., M.P.H.
Chief, Digestive Diseases Program,
NIDDK Division of Digestive Disease
Dept. of health & Human Service
2 Democracy Plaza
Bethesda, MD, 20892
phone: (301) 594-8877 email: firstname.lastname@example.org
Subject: Re: Adhesion Related Disease
Dear Dr. Hamilton;
I am Beverly J. Doucette, Patient Advocate for persons suffering Adhesion Related Disease. I am a volunteer with the International Adhesion Society and the director of the IAS outreach program as well as being instrumental in many other areas of the IAS.
Dr. Hamiliton, you were directed to respond to my communication to Secretary Tommy Thompson regarding ARD and I thank you for taking the time to do that.
If you recall, you enclosed a number of pages containing information on ARD research as well. You also closed your letter by saying that you hoped this information would be helpful to me.
I was pleased to receive your directive’s to help me explore the avenues to possible secure assistance in educating the public about adhesion related disease. Your referral to John D. Chapin, Administrator of the Wisconsin Dept. of Health and Family Services in Madison is greatly appreciated. I did follow up on your advice to check into the Centers for Disease and Prevention (CDC) of Atlanta, GA. Unfortunately there was no mention of adhesions anywhere within the contents of this web site. I did make inquires as to that and will continue to pursue the reasons why ARD is not a part of this centers interests.
The unfortunately thing, Dr. Hamilton, was that non of your information regarding “Research of Adhesion Tissue & Studies ” was news to me and all of it simply substantiated what I was aware of in the first place...there is NO current effective research being conducted anywhere in the world, that we are aware of, that will impact the lives of those suffering ARD today, nor will it affect those currently suffering the most painful and disabling complications of ARD in the near future!
I was somewhat amused at the growing number of adhesion tissue researchers I have now amassed, your additions included!!! It appears that one out of every ten scientist in the world is looking to win the “Pulitzer” prize by figuring out adhesion fornation! With the progress that has been made in this area of research within the past 15 years, not with standing the measly amounts of grant money given to this, I fear we shall not see anything resolved on adhesion tissue in our lifetime, short of a miracle that is!
In fact, Dr. Hamilton, I think that the information I attached in this email to you will offer you much more education regarding Adhesion Related Disease then your information did for me! My information is current at that! You did state that Dr. James Pachence at Vertitas Medical Technologies, Inc. had recently completed the study you sent me, but no dates were given on that study as to just how recent they were.
I also went to the web site of the Center for Disease Control and Prevention (CDC) and based on what I did NOT find in that site simply substantiated what I had known. "Adhesion Related Disease" is one of the worlds best kept medical secrets! That will not continue to be the case as the IAS, under my direction, is currently completing the
" ARD Press Kit " and we have a number of reporters throughout the USA waiting to receive them.
I am not sure what you thought you were going to accomplish in sending me the research information that you did, or if you simply thought I was not acclimated to ARD to the degree that I am. I am inclined to think the later is true.
Dr. Hamilton, I know Dr. Lena Holmdahl of Sweden personally, and I am very familiar with her research on adhesions, her philosophy's on ARD and her choice of adhesiolysis procedures! If you are interested in those issues, feel free to ask me about them. I am also very familiar with the three Dr.'s Nezhat, and I am very acclimated to their ARD research and claims. I have attached the most current information I have received regarding the Dr.s Nezhat encompassing those very same issues! For the record, Dr. Hamilton, I have been following a number of the issues surrounding these Dr.s for two years now.
You might be interested to know that in April of 2000 and again this week, I was approached by the Lifecore / Ethicon Pharmaceutical Division of Johnson & Johnson to speak on their behalf in front of the FDA regarding the adhesion barrier, " Intergel!" I am not going to accept that offer though.
I am also very acclimated to the clinical trials of this product, both herein the United States as well as in Europe. I was able to study the use of and effectiveness of Intergel on my two trips to Europe last year by the way.
Dr. Hamilton, my intentions for submitting the information of Adhesion Related Disease to Secretary Thompson was to impress upon him a number of issues surrounding ARD. The IAS intends to focus attention on a number of issues concerning ARD through the news media by use of our press kits. I did not want Tommy Thompson to be blindsided by the press and the public in general once this information gets published.
Among the issues we intend to address are: * Promote awareness of Adhesion Related Disease * Provide information on ARD, it's treatments and prevention * Provide information on the impact of ARD on society * The lack of research regarding ARD
* The lack of medical intervention for those who suffer ARD * Including the lack of medical insurance coverage and * And securing disability benefits for ARD sufferers among other things.
The IAS has also been invited to personally present our issues on ARD to the Surgeon General, Dr. David Satcher M.D. as well as the Honorable Judy Biggert, Member of Congress, and co - chair person for the "Women's Caucus. "
Dr. Hamilton, I am considered by some to be the most informed consumer of Adhesion Related Disease in the world today, therefore, I am not easily satisfied with most of the communications I receive from persons within the medical community regarding ARD! Over all the information you sent to me was of no benefit to me other then to support my own findings on ARD in that there is very little being done to educate the public and health providers in the United States!
I do have one question for you that I am hoping you will elect to answer for me: Based on the high incidence of ARD in our society, the extremely high percent of people impacted by ARD in so many disabling ways and the massive financial burden ARD places on America today, why is it that your office, the CDC and many other public institutions, that are being paid for by U.S. tax payers money, have not focused ANY public awareness on ARD or attempted to reach out in a positive and progressive way to help those who suffer it?
Dr. Hamilton, this same information is pointed out in a number of the research papers you sent to me, and you knowing that there is no plausible medical intervention for ARD sufferers at this time, there is still no action taken to educate the public on it? Seems strange to me!
I thank-you for taking the time to consider this email and if there is anything more I can offer you on the subject of Adhesion Related Disease, please do not hesitate to call on me.
In peace and friendship, Beverly J. Doucette http://www.pathwaystohope.org http://www.adhesions.org/Links/ http://www.adlap.com
Harry Truman said, "I didn't really give ‘em hell. I just told the truth and it felt like hell."
Cc: Secretary T. Thompson U.S.A. Dept. of HSS
Dr. Haile T. Debas Dean of UCSF
Dr. James M. Pachence Veritas Technologies
John D. Chapin Director of the WI Dept. of HSS
Dr. David Satcher M.D. U.S.A. General Surgeon
"SMILE............It confuses people!"