To Congressman Ralph Regula:
Thank you for your time. I will be as direct as
possible. I am writing to you to ask for help in getting funding for
research for a horrible disease called Eosinophilia-Myalgia Syndrome(EMS).
This can be a potentially deadly disease and if you do survive, the
complications of this disease can be heart failure, lung failure and many other
very nasty direct effects as well as all the side effects of the medication that
this disease requires you to take. If you need to read up on it some more
you can go to the website www.nemsn.org and this will give more insite into the
disease. I admit that this is not a disease like cancer that has millions
of people suffering, but none the less, it does have thousands of people
suffering and a few that have not made it.
What the National Eosinophilia-Myalgia Syndrome Network is
asking for is you to help push through funding to help research a potential cure
for this disease. Dr. Gleich from the Mayo clinic is currently studying
this disease but needs funding to continue. The funding level that he
thought was needed would be $10 million/year for 5 years. We think this
amount would help drive the discovery for the cure and prevention of this
disease.
On a personnal note, my wife was diagnosed with EMS 2 years
ago. She is only 39 now and we have twin boys that are 4 years old.
Because of this disease, my wife has had heart failure and nearly
died. She has had lung problems and skin problems and has seen 15 to 20
doctors. She is highly depressed and can't even fully clean our house or
watch our kids. She is a full time housewife and would like to continuue
this. I am self employeed so we have no medical card for prescriptions and
are paying close to $8,000.00/year on drugs. This has just been a very bad
time in our lives and some help would be very, very much apprectiated.
I know our government spends money on all kinds of wasted
research where this could directly impacts many EMS patients. I ask
of you to please take this to the appropriations commitee and see what you could
do to help us. I would be willing to come to Washington and speak if
it would help.
Please help us as we go through these very tramatic
times!
Sincerely Yours,
Ken Kleemeier
Reply
Dear Mr. Kleemeier:
Thank you for contacting me regarding your support for increased federally funded research on Eosinophilia-Myalgia Syndrome. I appreciate hearing your thoughts and I share your strong concerns about this horrible ailment.
As you are aware, Eosinophilia-Myalgia Syndrome (EMS) is a multi-systemic disorder that was first recognized in 1989. This disease is very often difficult to diagnose and its symptoms include muscle pain and a high Eosinophilia white blood cell count.
As you may know, I am the Chairman of the House Appropriations Subcommittee on Labor, Health and Human Services and Education, and in this position I have jurisdiction over the budget of the National Institutes of Health (NIH), the world's premier biomedical research institution. Under my leadership, funding for NIH has increased by 14.7% to $23.285 billion, an increase of $3 billion, for fiscal year 2002. Specifically, the National Institute on Musculoskeletal and Skin Diseases, the lead institute within the NIH on EMS research, received $448.865 million in funding, an increase of $52 million. Additionally, the final bill urged the National Institute on Musculoskeletal and Skin Diseases to enhance research efforts to identify the cause of EMS and develop a better understanding of the characterization of the pathophysiological events leading to the chronic phase of the disease.
The final version of this bill passed the House of Representatives passed on December 19, 2001, and the Senate on December 20, 2001, becoming Public Law 107-116 on January 10, 2002, when the president signed this important piece of legislation into law.
I appreciate hearing from you regarding this disease and knowing of your support for research into it. We share the common belief that the investment we make in NIH will be realized in a better quality of life and improved health for all Americans.
Thank you for writing to express your concerns.
Sincerely,
Ralph Regula, M.C.
RR/mn