LEGISLATION REFORM NEEDED
 
Uterine Fibroid
Research, Education, Alternative Treatments, and Surgical (Operation) Consent Form

 By:  Hope Waltman

Author’s Note:  This article is compiled of facts and figures found through my personal research and interviews with State Representative Jerry Nailor and Dr. Robert L. Worthington-Kirsch.   I discovered that many women are not aware of uterine fibroid research, uterine fibroid treatments, education, and legislation.  

The following uterine fibroid statistics are from the Society of  Interventional Radiology (SIR) website:  Approximately 177,000 to 366,000 hysterectomies and 35,000 myomectomies are performed annually for fibroids.  Annual charges for inpatient care for fibroids (primarily surgical) exceeding $2 billion (1997).  Thirty percent of women aged 25 to 45 are diagnosed with uterine fibroids.  This suggests roughly 30,000 * women, in the prime of their lives, will confront this disease.  *(Estimate based on U.S. Census data and incidence rate.)  African-American women face an even higher incidence of uterine fibroids.  Refer to www.sirweb.org. 

In March 20, 2002, I faxed a letter to State Representative Jerry L. Nailor expressing a question on an article I had read, “U.S. Hysterectomy Rates Still High” by Colette Bouchez, HealthScout News.  My question to Mr. Nailor was “Does Pennsylvania have legislation in place to add all alternative uterine fibroid treatments on the Surgical (Operation) Consent Form?”  Mr. Nailor did not ignore my letter, but instead responded back with a letter stating the following:  “Currently, no such legislation has been introduced.  Act 135 is the law that addresses medical informed consent.  The Pennsylvania law requires physicians to obtain the patient’s informed consent prior to certain medical procedures.  Physicians provide patients with a description of the procedure and the risks and alternatives that a reasonably “prudent patient” would need to make an informed decision as to that procedure.  Pennsylvania law requires that the patient be advised of those material facts, risks, complications, and alternatives that a reasonable person in the patient’s situation would consider significant in deciding whether to under go the procedure.  In defending against a claim, a physician may now present evidence of the description of the procedure at issue and those risks and alternatives that a physician acting in accordance with the accepted medical standards of medical practice would provide.” 

After reading that paragraph one question came to my mind “What are the rights of women who were never told about all the alternative uterine fibroid treatments, such as Uterine Artery Embolization (UAE)?  What rights do they have to save their uterus and prevent invasive surgery?” 

Mr. Nailor did not stop at just researching the answer to my question, but he also passed my correspondence along to members of House Health and Human Services Committee, Representative George T. Kenney, Chairman. 

I have been researching to find ways to get uterine fibroid research, women’s education, and the Surgical (Operation) Consent Form legislation for women in Pennsylvania.  I have started a uterine fibroid web site with Dr. Robert L. Worthington-Kirsch as the Medical Advisor.  I am in the process of starting a uterine fibroid support group. 

A Federal bill, H.R. 1672 – Uterine Fibroids Research and Education Act of 2001 (introduced in the House) also needs to be supported by women.  Please contact your Federal Senators and House of Representatives asking for this bill to be passed.  You can access this bill online at: http://thomas.loc.gov/.  (If you don’t have a computer, the public library has access to the Internet.)

I look forward to hearing from other support groups and hope that ALL women will contact their Senators, House of Representatives, and House Health and Human Services Committee and ask them to support uterine fibroid legislation reform.  To find your local legislators, check the blue pages in your phone book under Government Services or you can find information online at http://www.legis.state.pa.us/ for your state legislators or http://clerk.house.gov/members/index.php. 

For more information on uterine fibroids:  Robert L. Worthington-Kirsch, M.D., FSCVIR  web site,  www.fibroidcorner.com, (e-mail) kirsch@igsapc.com,  and coming in late September, www.hopeforfibroids.org, Hope Waltman, Founder, (e-mail) hopewaltman@paonline.com. 

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