Reminder: Help Support Fibroid Research & Education

[Guest guest]

Hello,

So I finally sent out a message to my family and friends asking them

to contact their congressional reps about the Fibroid Research and

Education Act -- it has gone to about 60 people so far.

Mostly I've gotten back notes from people thanking me for passing on

the information to them and they have followed through with my

request. One friend wrote back that she just had a hysterectomy 3

weeks ago to get rid of several huge fibroids she said were causing

her pain. She said she tried all the alternatives but since she is in

her early 40s I wonder why she didn't have a myo. It makes me sad but

then again we know that many, many women have fibroids and most don't

know to talk about it and find support such as in this community

here. We all also know that sometimes hysterectomies are necessary

and appropriate so maybe that was the situation for my friend.

Anyway, I wanted to remind you to write in about this bill and to let

friends, family and colleagues know about it as well -- as you feel

comfortable. I've included my latest letter (edited from last time)

below -- feel free to edit to meet your own needs.

Best,

Ann

SUBJECT: Help Support Fibroid Research & Education

Hi,

I wanted to ask you to please contact your representatives to the

House and Senate and ask them to support the Uterine Fibroid Research

and Education Act of 2003 (House Bill H.R.2157, Senate Bill S.1087).

These are both still in the Health subcommittees but it would be

great if more people would write in support of these bills.

In case you didn't know, [TELL YOUR FIBROID STORY HERE]. Uterine

fibroids are non-cancerous tumors of the uterus that affect between

25% and 80% of women and can cause symptoms that may include:

excessive bleeding leading to anemia, infertility, and put pressure

on the bladder, urethra, intestines, etc. The research they might be

able to do if this is approved could help other reproductive and

gynecological conditions as well. At the very least it would help

make sure women are given other options before hysterectomy such as

myomectomy or embolization.

If you aren't in the practice of writing to your congress don't worry

it is really quite simple. Visit the links below and enter in your

zip code to find your representative or select your state to find

your senator, you can then use the web form to fill out your contact

information, the topic area you want to select is " Health " and you

can fill in your comments which can be quite brief (such as: " Please

support the Uterine Fibroid Research and Education Act of 2003, House

Bill H.R.2157 " ) or you can include a personal story that relates to

this act. Try to keep your communication to just the single topic and

do mention the name of the bill that you are referring to.

Find your representatives here:

http://www.senate.gov/

http://www.house.gov/

Thank you,

[YOUR NAME HERE]

P.S. – Please forward this message to other people if you can and if

you know anyone who has fibroids and wants to talk about it please

pass along my contact info.

From the Senate testimony given last Spring by land Senator

Barbara Mikulski (with Senator Hillary Clinton of New York):

" Despite their prevalence, little is known about uterine fibroids,

and few good treatment options are available to women who suffer from

them. Right now, hysterectomy--the surgical removal of the uterus--is

the most common treatment for uterine fibroids. More than 200,000

women undergo a hysterectomy each year to treat their uterine

fibroids, which requires a six week recovery, has a 20 to 40 percent

risk of complications, and means a women can no longer bear children.

Less invasive treatment options, like drug regimes or fibroid

embolyzation, are promising, but many have not undergone the rigorous

testing that women expect. In fact, the Agency for Healthcare

Research and Quality at the Department of Health and Human Services

found ``a remarkable lack of high quality evidence supporting the

effectiveness of most interventions for symptomatic fibroids.''

Women deserve better. That's why I am introducing the uterine Fibroid

Research and Education Act--to find new and better ways to treat or

even cure uterine fibroids.

This bill does three things. First, it expands research at the

National Institutes of Health, NIH, by doubling funding for uterine

fibroids every year for the next five years. Despite a budget of over

$27 billion, NIH spent just $5 million on uterine fibroids research

in 2002. This legislation authorizes $50 million over five years to

provide the investment needed to jumpstart basic research and lay the

groundwork to find a cure.

This additional funding will help researchers find out why so many

women get uterine fibroids, why African American women are

disproportionately affected, what tests women can take to prevent

uterine fibroids, and what are the best ways to treat them. "

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To learn more about uterine fibroids, visit the National Uterine

Fibroid Foundation website: http://www.nuff.org/health_statistics.htm

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