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Washington hearing and Johanna's Law Washington hearing and Johanna's Law

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Unread 05-11-2005, 12:50 PM
Washington hearing and Johanna's Law

I actually got up at 4:30 this morning to hop on an Amtrak train to Washington DC. Johanna"s Law (the gyn cancer education and awareness bill) was introduced to the Senate via a hearing with the Health and Human Services Appropriation Committee.
This committee is headed by Senator Specter and Senator Harkin. Fran Drescher, Sheryl Silver (the creator of Johanna's Law) and the head doc at NCI each gave testimony.

It was incredible to be sitting in the Dirksen Senate Building
and finally get to see my own cancer get major attention from the federal government.
Sheryl was extremely informative with her testimony, as I knew she would be. Fran also did a super job!! She is seriously committed to the gyn cancer cause, and was the spark that got this hearing to happen. The NCI chief spoke in more general terms about cancer.

I had the priviledge to meet both Fran and her doctor Beth Karlan, who is the current president of the SGO. Both were very friendly and sincerely interested in our brief conversation.

WOW! What a day. I am so glad I was able to attend.

oxoxox karenann
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Unread 05-11-2005, 02:05 PM
Washington hearing and Johanna's Law

Wow, Karenann, what an experience!

Being CDN, I am not too sure what happens with your senate, but anything that brings this disease front and centre, is a good thing!

Congratulations on being included in this, and on getting to meet these women, who are obviously doing great things on behalf of all of us.
Unread 05-11-2005, 03:15 PM
Washington hearing and Johanna's Law

I'm so glad you went. I wanted to go since I live in the Washington suburbs, but had a big deadline at work and just got notice of the hearing on Monday.
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Unread 05-11-2005, 03:29 PM
Washington hearing and Johanna's Law

Karen, thanks for being there.

Unread 05-11-2005, 03:36 PM
Great You were there

Now we need to get that bill passed. My rep. is on--I know I've contgacted my senators but pass word when it is needed. I have one senator who sits on h is behind.
Unread 05-11-2005, 08:01 PM
Washington hearing and Johanna's Law

What a great opportunity. I didn't realize Fran was still so active in gyn cancer causes. We need more \celebrities like her (but then you don't wish cancer on anyone).

On on our senators (in Illinois) mother died of ovca. So I think we have his support. I plan on writing to both of them again. My congressman supports the bill.

Thanks for sharing a great experience.

Unread 05-11-2005, 10:16 PM
Washington hearing and Johanna's Law

What a day!!!
What an awesome experience!

Unread 05-12-2005, 04:36 AM
Washington hearing and Johanna's Law

Job well done, Karen! Do you happen to know whether the version of Johanna's Law that was introduced into the Senate was identical to the House version? I tried to find out this a.m. on Congress's website, but based on a quick search, wasn't able to find it posted yet. If so, I have several concerns with the proposed language of Johanna's Law as originally introduced into the House in November 2003 (and recently reintroduced in March 2005), which I communicated to my Congressman in 2003 when the bill was first introduced.

Here are my concerns:

1. The proposed bill provides for public service announcements (PSAs) in the media encouraging women to discuss their risks of gyn cancers with their physicians. (I have doubts about the effectiveness of this which I'll save for another day). However, the PSAs will also provide that women can obtain written materials on gyn cancers from the Federal Government, upon request.

I believe that in these technologically-savvy times, and because when dealing with cancer time is of the essence, any truly effective national campaign must include a requirement that the written materials also be available in electronic downloadable format on the Internet.

2. There is no mention in the section of the proposed bill on PSAs about gynecologic oncologists. I believe the PSAs should inform the public that gynecologic oncologists are specialists trained to treat women's gynecologic cancers.

3. While the proposed section on PSAs states that the PSAs shall call attention to early warning signs and risk factors, I believe that to be truly effective they need to provide information on currently-available screening and diagnostic tests.

I will let at least one of my two federal Senators know my above thoughts if I learn that the version of Johanna's Law introduced into the Senate mirrors the House version.

I encourage others interested in Johanna's Law to read the actual text of the bill to see what the proposed law is supposed to accomplish. Now is the time--before the bill actually becomes law--to let your federal representatives know if you feel changes are needed to make the law truly effective in accomplishing its stated goals, one of which is saving women's lives.

Take care,

Unread 05-12-2005, 08:16 AM
One More Thing

Hi, Karen,

I was also very curious why Dr. Beth Karlan, SGO President, did not testify yesterday. Seems to me that she could have provided a very strong statement as to the urgent need for Johanna's Law, don't you think?

Since she went all the way to Washington from LA to be present at the Senate hearing, I would have expected her to make a public statement on behalf of the SGO in support of the legislation.


Unread 05-12-2005, 08:54 AM
Washington hearing and Johanna's Law


What a wonderful experience the hearing must have been for you!!! I think I heard of a version of this bill...is it the bill that in part would provide for blood tests to determine the CA levels for women as part of their annual physicals? Sort of like the blood test for prostate cancer. I have read that Fran Drescher went months to doctors who kept telling her that nothing was wrong and she finally had a doctor who diagnosed her with uterine cancer. I understand that her book tells her story with a humorous bent and she has done some projects with the Lifetime network producing dramas to make women aware of gyno cancers and supporting more research and awareness of the various diseases. The lifetime network has a website with some information on gyno. cancers.
Karen, I, as well as all women, owe you a debt of gratitude for your motivation and unselfishness in spreading the word about the bill.
Please keep us updated and let us know if there is anything else that we can do to support the passage...
L- endo. 1(b), 3; TAH/BSO

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