Monday, November 17, 2008

Auto immune disease Bill HR 7078

Back on October 4th I wrote about the bill introduced by Patrick Kennedy that would allow more finding for research on auto immune diseases. I wrote my congressman asking for his support on this bill and, Well he wrote back...

Dear Mr. Rojo:

Thank you for sharing with me your personal experience
with autoimmune diseases and for contacting me in support of
H.R. 7078, the Prevention, Awareness, and Research of
Autoimmune Diseases Act of 2008. I appreciate hearing from you
and I welcome the opportunity to respond.

Like you, I believe that we must join together in the fight
against autoimmune diseases by supporting programs that increase
public awareness and research initiatives that focus on early
detection and treatment. Autoimmune diseases affect as many as
23.5 million Americans and encompass more than 100 interrelated
diseases, including lupus, multiple sclerosis, rheumatoid arthritis,
Sjogren's syndrome, polymyositis, pemphigus, myasthenia gravis,
Wegener's granulomatosis, psoriasis, celiac disease, autoimmune
platelet disorders, scleroderma, alopecia areata, vitiligo,
autoimmune thyroid disease, and sarcoidosis. According to the
National Institutes of Health (NIH), autoimmune diseases are
collectively one of the top 10 leading causes of death in women
under age 65 and account for at least $100 billion in annual direct
health care costs.

You may be pleased to learn that I am a strong supporter of
H.R. 7078, which was introduced by Congressman Patrick
Kennedy (D-RI) on September 25, 2008. If enacted, this legislation
would support public awareness initiatives, as well as efforts to
increase rates of early detection of certain autoimmune diseases.
Specifically, this legislation would focus on minority communities
that may be underserved or disproportionately affected by
autoimmune diseases. H.R. 7078 would call for research on
environmental triggers of these diseases, such as heavy metals,
phthalates, and pharmaceuticals, some of which are known to
"trigger" the initiation of autoimmune disease in genetically
predisposed individuals. Finally, this legislation would authorize
grants and institute a loan repayment program to support the
education of health care providers on potential links between
autoimmune diseases and cognitive and mood disorders, such as
depression. This legislation is currently pending before the House
Committee on Energy and Commerce. Please be assured that I will
keep our shared support for increased public awareness and
research of autoimmune diseases very much in mind as Congress
considers health issues.

Thank you again for contacting me. As your
Representative in the United States Congress, it is a privilege and
an honor to serve you and to act as your voice in Washington.
Please feel free to contact me again with any other issue or matter
that concerns you. You may also want to visit my website at where you can find out how I have voted
on legislation, learn which bills I have introduced and
cosponsored, and keep current with my latest Congressional
activities and policy statements.


Steven R. Rothman
Member of Congress

It's sort of a generic letter that I'm sure you can reuse to whoever inquired about his thoughts on the bill but I'll take it!
here is the letter I originally sent him in Oct


Paula said...

Thank you so much for posting on this.
I have written my Representative Vern Buchannan, as well as Representative Patrick Kennedy.

Nov 18, 2008

Similar letter sent to Vern Buchannan re hr 7078
This one to Representative Patrick Kennedy
Congressman Rhode Island

Re: HR 3359, the Prevention, Awareness, and Research of Auto-Immune Diseases Act aimed at improving research and outreach for the estimated 14 to 22 million people affected by autoimmune diseases, most of whom are women.

Thank you for bringing attention to these devastating conditions.

I am requesting that you correct the spelling of Sjögren's Syndrome in your bill. the bill shows the spelling as Sjo. AE4grens.

Sjögrens is an autoimmune, inflammatory connective tissue disorder. It is the second most common autoimmune rheumatic disease.

Please consider expanding the bill to allow Advanced Registered Nurse Practitioners to be funded for research.

Research and Education can prevent the debilitation caused by this disease.

In my family, my father was diagnosed with it in 1982 and died that same year following general anesthesia given to remove his remaining rotted teeth.

I was diagnosed in my late 50's after many years and multiple doctors. My sister was not diagnosed by her healthcare provider until lat year, although i was certain of it shortly after my diagnosis.

It is rare, in medicine, to have people excited and happy to receive a diagnosis. With Sjögren's, this is the case because it becomes concrete, we can no longer be dismissed as hypochondriacs and considered in need of only psychiatric care to treat the debilitating fatigue, vaginal dryness, gerd, multiple chemical sensitivities, IBs, etc.

Please continue your good works.

For more information on Sjögren's Syndrome see my website


Sarcoidosis Untied said...

Paula That is a great letter. I got my whole family to write letters to their respective congresspersons and next month I plan on doing another round of letters and asking more people to write.

Thanks again Paula

Ellen said...

Paula, you said, "It is rare, in medicine, to have people excited and happy to receive a diagnosis." This is so true but sadly not the case with most people who suffer with autoimmunity disorders. You are right. We are made to feel like major hypochondriacs and those of us with multiple disorders that have interrelated symptoms have the issue then of correctly determining which doctor do we see for what. I'm very supportive of this bill in hopes of one day having a physician specialty dedicated purely to treating autoimmune disorders.

I sent a letter to my Representative this past November. Unfortunately I have not had any response from his office. I think it is time to write to him again.

Thank you for your comments!

Sarcoidosis United

Sarcoidosis United
Sarcoidosis United