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Testifying Before Congress--Johanna's Law Testifying Before Congress--Johanna's Law

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Unread 01-03-2004, 09:04 AM
Testifying Before Congress--Johanna's Law

Hello Everyone--

I recently received a letter from my Congressman in response to the letter I sent asking him to support the proposed federal legislation, Johanna's Law: The Gynecologic Cancer Education and Awareness Act. While Congressman Chris Smith stated that he recently signed on as one of the bill's additional cosponsors, a couple of things have me somewhat concerned about the future of this proposed legislation. First, his letter stated as follows:

"If Johanna's Law is reported out of committee and brought to the House floor for a vote or incorporated into a more comprehensive legislative initiative, I will look to support it."

I wonder if the above statement could signal the fact that Congress might not consider a law on gynecologic cancers important enough to pass on its own.

Second, the Congressman's letter went on to discuss the fact that he recently cosponsored a breast cancer treatment bill for women who have had mastectomies. While no doubt that bill is also an important piece of legislation, I am concerned that he and other federal legislators may not have a clear picture of the problem that exists as a result of the lack of available gynecologic cancer information, awareness and education, both for women and physicians alike.

Congressman Smith's letter further states that he lost both of his parents to cancer, and that he is a member of the House Cancer Caucus. I intend to send him a letter thanking him for supporting Johanna's Law and offering to testify before Congress about my endometrial cancer experiences, if Congress would be interested in hearing input from gynecologic cancer survivors. I think given his position in Congress, Congressman Smith may be a good "ear" for us, and was wondering if anyone else might have an interest and/or desire to testify before Congress about their gynecologic cancer experience, assuming we can get them to listen to us?

If so, please let me know, and I will be happy to include the information in the letter I will be sending to Congressman Smith in the near future.

Many thanks.

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Unread 01-03-2004, 09:10 AM
Testifying Before Congress--Johanna's Law

Hello MoeKay,

Would you tell us about the proposed federal legislation, Johanna's Law?
Unread 01-03-2004, 05:33 PM
I would absolutley be willing to testify -

and I will write to my congressman again about Johanna's Law.
This is so very important! Please let me know what else I can do to help it get passed...
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Unread 01-03-2004, 07:09 PM


That's Great! I think your input will be extremely helpful and compelling. Let's keep our fingers crossed that we are able to get the opportunity to do it!!

I'll let you know what, if anything, I hear back in response to my letter.



I'm providing the results of a google search and all prior Hystersisters threads on Johanna's Law:



Unread 01-04-2004, 10:30 AM
Count me in!

I would love to help out, too. Let me know what else I can do!
Unread 01-04-2004, 12:20 PM
Response to cancer diagnosis

I agree that we need to alert the congress and senate on what type of information we have had. WE SHOULD HAVE INFORMATION PROVIDED TO US LONG BEFORE DIAGNOSIS!
When I had my hysterectomy, it was because I had what was referred to as "Complex Atypical Endometrial Hyperplasia." My doctor told me the word "atypical" was the key word here and that I needed a hysterectomy because they don't know how long it takes from the pre-cancerous state to uterine cancer. I decided to have the surgery as soon as possible. I lost my mother to colon cancer two years prior and did not want to wait. After my surgery, my doctor informed me that he had good news and bad news. The good news was that I didn't need any further surgery. (He did extensive surgery, including pelvic washings and omentectomy. My surgery was 3 hours long rather than the initially planned two hours.) The bad news was that I had Stage Ia (turned out to be Ib) Uterine Cancer AND Stage Ic Ovarian Cancer. He told me the Uterine Cancer was contained within the uterus and nothing further was needed. He then said that I was "fortunate" because Ovarian Cancer is usually found late--Stages III and IV. I asked him, "I go for exams and Pap tests every year. Is this my reward?" His response was: "It could have been worse." I was referred to a Gyn-Oncologist. After initially telling me that I would need chemo of taxol and carboplatin, the final pathology report after second and third opinions said I had LMP or "borderline." I was told, "You don't need chemo because you don't have cancer!" I was told that I had less than a 7% chance of recurrence, but I needed "watchful waiting" and was referred back to my Gyn (surgeon) for follow-up every three months the first two years post-op and then every six months for the next 10 years. I am now 3 years and 7 months post-op and have kept my appointments faithfully, which includes Pap tests every six months.
The only person I knew about with ovarian cancer was the mother of a friend of mine. I never met the lady, but heard plenty about her suffering. She was only in her late 50's when she was diagnosed and died at age 62 or 63. For this reason, I needed more information and turned to this website and others. I became involved in advocacy after attending the Ovarian Cancer National Alliance's Advocacy Conferences in 2001, 2002 and 2003. I talk to as many women as I can and provide them with a symptom/risk card. It is our responsibility to help our sisters and to educate the congress on the need for Johanna's Law. Thank you Sheryl Silver for developing this bill to be presented to Congress.
Unread 01-04-2004, 04:39 PM
Members of House Cancer Caucus

Susanne and Linda--

Thanks for your responses and kind offers of assistance. I'm sure we all have a somewhat different yet equally compelling story on why, based on our own experiences, passage of Johanna's Law is essential to ensure that both women and physicians have the necessary information to ensure timely diagnoses and effectively treatment of gynecologic cancers.

I will begin working on the letter to my Congressman and will inform him that I am aware of a number of other gynecologic cancer survivors who expressed an interest in testifying. Since Congressman Smith had advised me in his letter that he was a member of the House Cancer Caucus, I did a search and found a site that lists all the Caucus members. Here it is:


If your Congressman or woman is a member, it might be worth a letter advising him/her directly that you and a number of other gynecologic cancer survivors are interested in testifying about our experiences and why we believe it is so essential that they pass Johanna's Law. I think I will focus my letter on our desire to speak first to the House Cancer Caucus. I think we might have a better shot with the Caucus initially, since their sole focus is cancer, and we can see where that leads us!

I'll keep you posted on my progress and will look forward to hearing if anyone receives a positive response from their Congressman or woman.

Good luck and take care.

Unread 01-05-2004, 07:03 PM
Timing Is Everything!!

Hi, Georgene, Linda and Susanne--

I wanted to update you (and anyone else who's interested) on the fact that in today's mail I received a flier from my Congressman advising that he has scheduled town meetings at various locations throughout the legislative district to discuss with his constituents, among other things, our "views on legislation pending before Congress."

Congressman Smith is scheduled to come to my town next Wednesday, January 14th. I am planning on going to meet with him in person and ask him if he could possibly arrange for us to appear before the House Cancer Caucus to talk about our gynecologic cancer experiences. I will explain that providing us with an opportunity to speak to the Caucus will give them a better understanding of why it is essential for Congress to pass Johanna's Law as soon as possible. I also will take a copy of the letter I was planning on mailing to him, in the event that for some reason I am unable to get to speak to the Congressman in person on the 14th.

Please keep your fingers crossed, and I will report back to you on how things go!

Take care,

Unread 01-06-2004, 02:02 PM
Testifying Before Congress--Johanna's Law

My representative (Doug Bereuter, R-NE) made it sound like he would support it if it got out of committee.
Unread 01-06-2004, 02:02 PM
Testifying Before Congress--Johanna's Law

My representative (Doug Bereuter, R-NE) made it sound like he would support it if it got out of committee.

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