Uterine Fibroids, Congress, and the NIH.....

[Guest guest]

Carla:

I don't have any female children. I was just wondering if fibroids and other

uterine problems( endometrial cancer, endometriosis, and adenomyosis) are

mentioned in the educational material that is given to young girls as they

are about to begin menstruation? I would think that knowing these problems

can occur would encourage young women to build the habit of yearly exams and

paying attention to the pattern of their menstrual cycles.

Cheryl

[Guest guest]

In a message dated 9/5/02 10:47:05 AM US Mountain Standard Time,

cdionne@... writes:

> Talk about massive

> bleeding? Urinary Incontinence? Bulkiness? Dyspurenia? Publicly? I

> don't think so.

>

They wouldn't have to go on and on about the massive bleeding and urinary

incontinence. But it would help to have a famous person who has experienced

this and could give a face to the problem and talk about the need for

education. Of course, they would also have to have doctors to back them up

and who agreed that there are a lot of unnecessary hysterectomies. (One

celebrity did come out to talk about her uterine cancer in her book " Cancer,

Shmancer " .)

In my comment about fibroid information being presented to young girls just

beginning menstruation, my thought was that that might be one of the

side-doors to getting inside of and solving this problem. Getting a bill

through Congress is the front door.

Cheryl

[Guest guest]

gretta222000 wrote:

> I know I'm coming in a day late and a dollar short, but what about

> going to Wash, DC and testifying? Or gathering a group of fibroid

> activists

> to testify? Or submitting petitions?

Dear gretta222000,

I've been to DC about a half dozen times or so in the last year and done

much more lobbying than I really care to....especially since I'm not

exactly paid for any of the work I do for the National Uterine Fibroids

Foundation or on behalf of women with fibroids right now. We barely have

enough money to keep the phone lines open and the office afloat, much

less pay me any salary for my work! I am ever so grateful to the

multitude of volunteers among you who have chosen to take interest in

this issue and work diligently pursuing the mission goals of our

organization. Without all of you, we simply would not exist.

Lobbying for this issue is a bit grueling, actually, to go from office

to office and talk to aide after aide after aide....all of whom probably

aren't even 25 years old yet and most of whom have never heard of

fibroids previously.....then, the new session kicks in and it has to be

done all over again due to staff turnover. It's a massive educational

effort -- not helped in the least by the fact that there has never been

an educational campaign on this disease in this nation previously (gee,

no funding available -- which is WHY this bill is so desperately needed

NOW) so most of these 20-somethings who work in Senate & House offices

are completely clueless. Some of these aides are extremely helpful and

desperately eager to learn more -- while others are just plain rude and,

dare I say it, ignorant of soooooo much. It is indeed a grueling process

for any non-professional-lobbying-citizen to muster through.

I've also supplied testimony, helped aides gather the stats necessary

for the Senator or Representative to sound intelligent in fighting for

support of this bill and spent countless hours on the phone answering

questions.

It's still not enough. We need to find a way to do more. En masse. Right

now, it completely escapes me *how* we are going to accomplish that.

I received a call late yesterday and it would appear that the Uterine

Fibroids Bill has been sacrificed, for now, in negotiations with

Republicans. Basically, Republicans are saying they don't like bills

that micro manage the NIH with specific dollar allocations and are

refusing to support the Uterine Fibroids Research & Education Act. In

opposition, they were going to drag the entire Women's Health Bill down

-- so, to prevent this, the Democrats sacrificed their fight for us in

order to get the current Women's Health Bill through committee without

opposition. At least, that's what was communicated to me via several aides.

ly, I think the NIH desperately needs micro management on this

issue. Over the last 3 decades (we're talking over 30 years here, folks)

the issue of hysterectomy in this nation has come up time and again in

Congress. Historical abuses of the hysterectomy include the Tribal

Nation scandal (where government paid physicians were performing

hysterectomies on women immediately after they gave birth--a lovely form

of attempted genocide) to the Mississippi Appendectomy (hysterectomies

routinely performed on poor, uneducated, black women in the south--of

course, since that investigation the numbers of Mississippi

Appendectomies have simply shifted to poor, uneducated, white women in

the south...with Mississippi leading the pack of national statistics on

the hysterectomy at 57% of all women in that state eventually getting

this treatment option) and a whole lot in between.

The NIH has been given so many subtle directives regarding research on

this issue over such a long period of time that it astounds me,

reviewing the political history of the hysterectomy in this nation. To

now say that micro management is " just wrong " is specious, at best. In

this case, and with this issue, we will not get anywhere with the NIH

without micro management. I firmly believe that. Why? Because of " who "

directs the intramural/extramural studies in many of the divisions and

how they work ever so closely with the pharmaceutical industry and

gynecological lobbying groups in this nation.

Fibroids ARE worth a lot of money. Currently, fibroids account for a

major percentage of the 10 billion+ spent annually on HRT and

hysterectomy surgery in this nation. A lot of lobbying goes on behind

the scenes to keep research on this issue down or directed towards the

hysterectomy. Deliberately. Anyone who takes a solid look at the CRISP

database of NIH research and begins to pull up the work done of fibroids

or hysterectomy via the NIH over the last 30 years, will start to see a

very clear picture of pharmaceutical directives that are anything BUT

research on the actual disease. Let me count the ways that GnRH has been

studied over the years and just how much money has been spent of NIH

dollars (what few dollars that HAVE been spent) to match the funds

supplied by a certain GnRH manufacturer on studies of their drug. Just

how does this kind of funding happen?

Beyond GnRH, there's the Kjerluff studies. Primarily to validate the

hysterectomy. Not research on fibroids at all. And, that's it.

BTW, the Fibroid Growth Study research being done at NIEHS is *not

really* fibroids research.....it's statistical analysis and modeling

research, with fibroids as the sample disease to test methods on. We

simply *lucked out* on that one, in more ways than I can even begin to

explain. You see, politics would probably prevent NIEHS from doing " out

and out " fibroids research -- because the researchers at NICHD

(responsible for all those terrific GnRH and hysterectomy validation

studies funded) believe that fibroids are within THEIR jurisdiction of

study and generally raise quite a stink over NIEHS crossing boundaries

on researching this issue. Nevermind that the NICHD certainly hasn't

bothered to do the research themselves. Nevermind that the environment

probably plays a HUGE role in the development of these tumors. Oh, and

one more bombshell to drop on you: the Laboratory for Women's Health at

the NIEHS is being shut down. These are the very researchers who would

have done even more for us on fibroids research in the future. Would

have. Won't now. There's no funding allocated in the NIH budget for it

anymore.

Tell me again why the NIH doesn't need micro management? What a crock.

The NIH is one of the worst run businesses in this nation . In my view,

Enron pales in comparison. Not only does the NIH need micro management,

they also need medical auditors, statisticians (with no hidden

interests) paying a helluva lot closer attention to what's getting

funded and what's not and how that relates to severity of disease and

prevalence in society of the disease. While I'm all for focusing in on a

disease and getting the research done, is a billion dollars/year for

breast cancer research really appropriate? Because between the NIH and

DoD, that's how much money is currently being spent on this single

disease impacting 1 in 8 women; while many, many other diseases of equal

or greater severity and/or prevalence are getting the shaft. Completely.

And, doesn't supporting a singular disease in this manner by financially

passing bill after bill to give it money, represent micro management of

the NIH as well? If so, why aren't the Republicans screaming about this

one? Because the breast cancer folks would burn them at the stake,

that's why.

The last time I checked, there were over 450 registered nonprofits in

this nation specifically working on the issue of breast cancer as a

primary mission statement. There is only 1 for uterine fibroids: the

National Uterine Fibroids Foundation. Us. And, without an ability to

educate the public on this issue due to lack of funding, my guess is

that in another 30 years we won't be a whole lot further along on this

issue than we are right now. Who'll do the research for free? Who'll run

the ad campaign for free? Who will create, print, and distribute the

educational materials needed for free? No one that I know. (If you know

someone who'll do this, drop me a line!)

Yesterday, as the aide from Carnahan's office and I chatted, we both

wept. Sheer exhaustion and frustration over wanting so much, asking for

so little, and having all of our efforts sacrificed due to bipartisan

political maneuvering. This is definitely not the School House Rock

version of getting a bill passed. Remember the series of rock songs

created for children to get them interested and learning about a wide

variety of subjects? Well, there was one for how a bill becomes law and

it references the issue of " discuss and debate " in such a light manner

as to not even begin to give the REAL process any sense of justice at all.

------------------------------------------------------------------------

I'M JUST A BILL

Music & Lyrics: Dave Frishberg

Building here in Washington!

But I wonder who that sad little scrap of paper is?

I'm just a bill,

Yes, I'm only a bill,

And I'm sitting here on Capitol Hill.

Well, it's a long, long journey

To the capital city, I

t's a long, long wait

While I'm sitting in committee,

But I know I'll be a law someday...

At least I hope and pray that I will,

But today I'm still just a bill.

I'm just a bill,

Yes I'm only a bill,

And I got as far as Capitol Hill.

Well now I'm stuck in committee

And I sit here and wait

While a few key congressmen

Discuss and debate

Whether they should

Let me be a law...

Oh how I hope and pray that they will,

But today I am still just a bill.

Debate about you?

" Die? "

If they vote " yes " , what happens?

I'm just a bill,

Yes I'm only a bill,

And if they vote for me on Capitol Hill,

Well then I'm off to the White House

Where I'll wait in a line

With a lot of other bills

For the President to sign.

And if he signs me then I'll be a law...

Oh, how I hope and pray that he will,

But today I am still just a bill.

President can still say no?

Not easy to become a law, is it?

No! But how I hope and I pray that I will,

But today I am still just a bill!

------------------------------------------------------------------------

Admittedly, I am naive. And, hopeful. And, terribly frustrated over the

shenanigans taking place in the halls of our Capitol in the name of

government. Whatever happened to a bill making it through Congress

simply on its own merits? Because, quite simply, it's a bill asking for

funding long overdue and millions upon millions of women deserve it?

Without the machinations of political maneuvering that sabotages a

worthy bill in the name of satisfying bipartisan egos?

Some realities about uterine fibroids:

- A recent AHRQ review of the medical literature/research on fibroids

was very clear in its indication of just how little we know about this

disease. We know, basically, little to nothing. Regardless of its 150+

year history and contribution to the hysterectomy statistics in this nation.

- Over 1.6 million women will be newly diagnosed with fibroids in the

coming year. Many of whom will be confronted with issues related to

fertility thanks to these obnoxious and debilitating tumorous growths.

- With the current funding levels allocated by NIH for research on this

disease ($500,000), that amounts to about $3.20 per woman on dollars

allocated for research on this issue. (Apparently, a fibroid woman's

quality of life CAN be bartered via the NIH and it has a value of

roughly $3.20.)

- Uterine Fibroids account for ~45% of all hysterectomies in this nation.

- This disease impacts women of all races. Some stats:

------------------------------------------------------------------------

WHO GETS FIBROIDS?

Race Incidence* Population Of Women New Cases Diagnosed

Black 30.6 per 1,000 18,309,891 560,283

White 8.9 per 1,000 98,476,381 876,440

Asian 8.0 per 1,000 5,489,427 43,915

Hispanic 11.0 per 1,000 16,089,357 176,983

American Indian/

Alaskan Native Not determined 1,201,634 Not determined

Source: National Uterine Fibroids Foundation

* " Incidence " is the number of new diagnoses of fibroids made each year

for every 1,000 woman years, as confirmed by ultrasound or hysterectomy.

" Incidence " statistics source: Marshall LM, Spiegelman D, Barbieri RL,

Goldman MB, Manson JE, Colditz GA, Willett WC, Hunter DJ. " Variation in

the incidence of uterine leiomyoma among premenopausal women by age and

race. " Obstet Gynecol. 1997 Dec;90(6):967-73.

** " Population of Women " source: National Women's Law Center, " Making

the Grade on Women's Health 2001. "

*** We don't have statistics on American Indians and Alaskan Natives and

fibroids. At all. Most likely this is, at least partially, in thanks to

the past abuses rendered on this population of women.

------------------------------------------------------------------------

I, quite clearly, don't have any answers. I don't think we should throw

in the towel on this issue, where Congress is concerned, but am simply

uncertain as to how to make any additional headway. Your thoughts on

this issue would be most welcome as I would sincerely like to pick

myself up from this fiasco and continue to work proactively towards the

end goal of pushing NIH into funding greater levels of research and

public education on this disease. The 64 million dollar question seems

to be " How? "

Carla Dionne

Executive Director

National Uterine Fibroids Foundation

1132 Lucero Street

Camarillo, CA 93010

1 (877) 553-NUFF (6833)

mailto:carla@...

http://www.NUFF.org

http://groups.yahoo.com/group/uterinefibroids

Author, " Sex, Lies, and the Truth About Uterine Fibroids "

Questions are the window of opportunity. Sometimes, just sometimes,

answers allow our souls to see beyond the shade of darkness and let the

sunshine in.

[Guest guest]

Carla Dionne wrote:

Your thoughts on

this issue would be most welcome as I would sincerely like to pick

myself up from this fiasco and continue to work proactively towards the

end goal of pushing NIH into funding greater levels of research and

public education on this disease. The 64 million dollar question seems

to be " How? "

We don't have a famous spokesperson or someone famous coming forward. Muscular

dystrophy has Jerry ; AIDS has and Sharon Stone;

Alzheimers has Reagan, Charleton Heston; Parkinsons Disease has

J. Fox. Hell, even Bob Dole is out there stomping for Viagra!

The general public does not know what a fibroid is. How is it that so many

millions of women have fibroids and no one knows what it is and what it does and

what it is like living with it? We don't even know the symptoms.

We don't have a recognizable face. I cannot believe that there is not one famous

woman out there that has fibroids. Politicians do nothing unless they are

pressured publicly. What we need is someone like Madonna (!) to come forward and

represent us. In my minds eye I can see millions of women coming out of this

shroud of secrecy and shaking a finger at our government shouting why haven't

you helped us by now?

Well, that's just my two cents for your 64 million dollar question.

[Guest guest]

SiCanto@... wrote:

> Carla:

> I don't have any female children. I was just wondering if fibroids

> and other

> uterine problems( endometrial cancer, endometriosis, and adenomyosis) are

> mentioned in the educational material that is given to young girls as

> they

> are about to begin menstruation? I would think that knowing these

> problems

> can occur would encourage young women to build the habit of yearly

> exams and

> paying attention to the pattern of their menstrual cycles.

> Cheryl

No, this information is not shared with young women. Not in materials

created by docs (hey, the ACOG fibroids brochure is so outdated that

it's truly unbelievable they are still sending it out!) Furthermore,

most high schools have very strict controls over what can/cannot be

taught the students on the issue of reproductive health care. And,

finally, colleges have all but eliminated the Health requirement that

was in place *back in my days* of attending college. geez, that makes

me seem sooooo old....well, guess I'm feeling it today! There are no

current avenues in place that would/could teach young women about some

of these health issues that I am aware of.

carla

[Guest guest]

ANITA GREIFENSTEIN wrote:

> We don't have a famous spokesperson or someone famous coming forward.

> Muscular dystrophy has Jerry ; AIDS has and

> Sharon Stone; Alzheimers has Reagan, Charleton Heston;

> Parkinsons Disease has J. Fox. Hell, even Bob Dole is out

> there stomping for Viagra!

Wellllllllllllllll........there are actually plenty of famous people who

have experienced fibroids.....getting them to stand up for this disease

issue publicly as a spokesperson, however, is quite another issue. I

haven't been successful thus far.

We have actresses, talk show hosts, politicians, even a CEO or

two.....but none thus far willing to stand up and admit publicly to this

or stand up for this issue as a spokesperson. In fact, most of them

have simply expressed admiration over ANYone standing up to talk about

this issue -- because they just could never do it. Talk about massive

bleeding? Urinary Incontinence? Bulkiness? Dyspurenia? Publicly? I

don't think so.

Jerry doesn't have MD and the children that do evoke a lot of

emotional charge which brings in millions.

Do and Stone have AIDS? I didn't think so.....

Is Reagan a real spokesperson of his own volition for Alzheimers?

I'm not so sure.

Parkinson's certainly has Fox -- but, then again, he couldn't hide it

any longer. He's been a remarkable representative of a disease which he

tried to hide from the public for quite some time.

As for Bob Dole......oy. I suppose it's good that ED has a face....but

how much was he paid to be a spokesperson?

::::::::::::shrugging shoulders over situation:::::::::::::::::

not sure what to make of *spokesperson* phenomena and how to make it

work for us.

carla

[Guest guest]

At 10:45 AM 9/5/2002, Carla Dionne wrote:

>Wellllllllllllllll........there are actually plenty of famous people who

>have experienced fibroids.....getting them to stand up for this disease

>issue publicly as a spokesperson, however, is quite another issue. I

>haven't been successful thus far.

I don't suppose you want to tell names? We could " out " them. (No, bad idea.)

>We have actresses, talk show hosts, politicians, even a CEO or

>two.....but none thus far willing to stand up and admit publicly to this

>or stand up for this issue as a spokesperson. In fact, most of them

>have simply expressed admiration over ANYone standing up to talk about

>this issue -- because they just could never do it. Talk about massive

>bleeding? Urinary Incontinence? Bulkiness? Dyspurenia? Publicly? I

>don't think so.

I was thinking that we all need to take a trip to the Capitol Building in

DC. We could stand on the steps or in the rotunda freely bleeding,

gushing, clotting, peeing... until someone listens to us.

No. Another bad idea.

We could send our representatives boxes of OB ultra tampons and super-duper

long pads, telling them the prices of these supplies and explaining why we

need them. That would be amusing.

>Is Reagan a real spokesperson of his own volition for Alzheimers?

> I'm not so sure.

No, but Reagan is. And Charleton Heston. And they just made that

beautiful film with Kate Winslet and Judi Dench, Iris, about how Alzheimer

robs one of life and sentience. Could we get a fibroids movie made and

released in Cannes? Emma did Wit, about ovarian cancer, surely

she could do a movie about fibroids.

>::::::::::::shrugging shoulders over situation:::::::::::::::::

recently testified before Congress on behalf of children with

Rett's Syndrome. Hardly any kids even HAVE Rett's Syndrome.

>not sure what to make of *spokesperson* phenomena and how to make it

>work for us.

Somehow we all need to be less ashamed of having fibroids. I may be

primarily speaking for myself, but I don't care to wander around telling

everyone I know about how horrible my monthly bleeding is and how I pass

clots the size of newborn kittens. But I'm getting better at being able to

talk about it. Now all I need to do is get famous so that someone will

listen to me. ;-)

Jen

[Guest guest]

Carla,

Here is a link to a web page to apply for funding through

MICROSOFT. Whether you'll get technology, money, or nothing, I

don't know. It might be worth your time. Bill has been known to be

a generous guy.

http://www.microsoft.com/giving/Display.asp?

Channel=Apply & Center=39486E88-83D6-40FA-A2E6-0E3D73A5DB19

[Guest guest]

I didn't mean to write that email

> in a way in which you might think I was being defensive or insulted,

> because I wasn't.

Hey Carla,

I always think you are way cool.

Greta