[Congressional Record Volume 151, Number 73 (Monday, June 6, 2005)]
[Senate]
[Pages S6109-S6110]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. SPECTER (for himself, Mr. Harkin, Mrs. Clinton, Mr. Obama, 
        and Mrs. Boxer):
  S. 1172. A bill to provide for programs to increase the awareness and 
knowledge of women and health care providers with respect to 
gynecologic cancers; to the Committee on Health, Education, Labor, and 
Pensions.
  Mr. SPECTER. Mr. President, I have sought recognition today to 
introduce The Gynecological Cancer Education and Awareness Act of 2005 
also known as Johanna's Law.
  Every year, over 80,000 women in the United States are newly 
diagnosed with some form of gynecologic cancer such as ovarian, 
uterine, or cervical cancer. In 2005, 29,000 American women are 
expected to die from these cancers.
  Early detection of these cancers must be improved to decrease this 
tragic loss of life. Unfortunately, thousands of women in the U.S. each 
year aren't diagnosed until their cancers have progressed to more 
advanced and far less treatable stages. In the case of ovarian cancer, 
which kills more women in the U.S. than all other gynecologic cancers 
combined, 70 percent of all new diagnoses take place after this cancer 
has progressed beyond its earliest and most survivable stage.
  Women are often diagnosed many months, sometimes more than a year 
after they first experience symptoms due to a lack of knowledge of 
early warning signs of gynecological cancers. Adding to the challenge 
of a prompt and accurate diagnosis is the similarity of gynecological 
cancer symptoms to those of more common gastrointestinal conditions and 
benign gynecologic conditions such as perimenopause and menopause. 
Women too often receive diagnoses reflecting these benign conditions 
without their physicians having first considered gynecologic cancers as 
a possible cause of the symptoms.
  The Gynecological Cancer Education and Awareness Act will improve 
early detection of gynecologic cancers by creating a national awareness 
and an education outreach campaign to inform physicians and individuals 
of the risk factors and symptoms of these diseases. When gynecological 
cancer is detected in its earliest stage, patients 5-year survival 
rates are greater than 90 percent and many go on to live normal, 
healthy lives.
  The national awareness campaign will be carried out by the Department 
of Health and Human Services (HHS) to increase women's awareness and 
knowledge of gynecologic cancers. The campaign will maintain and 
distribute a supply of written materials that provide information to 
the public about gynecologic cancers. Further, the program will develop 
public service announcements encouraging women to discuss their risks 
for gynecologic cancers with their physicians, and inform the public 
about the availability of written materials and how to obtain them. The 
projected cost of the awareness campaign is $5 million per year from 
2006-2008, totaling $15 million.
  The educational outreach campaign will be carried out through 
demonstration grants through HHS. These demonstration grants will go to 
local and national non-profits to test different outreach and education 
strategies, including those directed at providers, women, and their 
families. Groups with demonstrated expertise in gynecologic cancer 
education, treatment, or in working with groups of women who are at 
especially high risk will be given priority. Grant funding recipients 
will also be asked to work in cooperation with health providers, 
hospitals, and state health departments. The projected cost of the 
educational outreach campaign is $10 million per year from 2006-2008, 
totaling $30 million.
  This legislation was brought to my attention by my friend Fran 
Drescher, who was diagnosed with uterine cancer in 2000 and whose 
diagnosis was also delayed due to her lack of knowledge about symptoms 
of this disease. She has recovered from uterine cancer and is 
advocating on behalf of gynecological cancer awareness. She also 
brought to my attention one of the many victims of gynecological 
cancers Johanna Silver Gordon, after whom this bill is named, who was 
diagnosed at an advanced stage of ovarian cancer.
  Johanna, the daughter and sister of physicians, was extremely health 
conscious taking the appropriate measures to maintain a healthy 
lifestyle including exercising regularly, eating nutritiously, and 
receiving annual Pap smears and pelvic exams. Johanna however did not 
have the information to know that the gastric symptoms she experienced 
in the fall of 1996 were common symptoms of ovarian cancer. She didn't 
learn these crucial facts until after she was diagnosed at an advanced 
stage of this cancer. Despite aggressive treatment that included four 
surgeries, various types of chemotherapy, and participation in two 
clinical trials, Johanna died from ovarian cancer 3\1/2\ years after 
being diagnosed. Johanna is survived by her sister Sheryl Silver who 
has tirelessly worked to increase the information available regarding 
gynecological cancers.
  As Chairman of the Labor, Health and Human Services, and Education 
Appropriations Subcommittee, I led, along with Senator Harkin, the 
effort to double funding for the National Institutes of Health (NIH) 
over five years. Funding for the NIH has increased from $11.3 billion 
in fiscal year 1995 to $28.5 billion in fiscal year 2005. In 2004, the 
NIH, through the National Cancer Institute provided $212.5 million for 
gynecological cancer research. Further, the Centers for Disease Control 
and Prevention's National Breast and Cervical Cancer Early Detection 
Program (NBCCEDP) provided $209 million in fiscal year 2005 for breast 
and gynecological cancer screening and diagnostic services, including: 
pap tests, surgical consultation, and diagnostic testing for women 
whose screening outcome is abnormal. To date, the Program has screened 
more than 2.1 million women, provided more than 5 million screening 
exams, and diagnosed 66,295 pre-cancerous cervical lesions and 1,262 
invasive cervical cancers. We must continue these efforts to do more to 
provide information about gynecological cancer to physicians and those 
most at risk.
  I believe this bill can provide desperately needed information to 
physicians and individuals so that women can be diagnosed faster and 
more effectively. I urge my colleagues to work with Senator Harkin and 
me to move this legislation forward promptly.

[[Page S6110]]

  I ask unanimous consent that the text of the bill be printed in the 
Record.
  There being no objection, the bill was ordered to be printed in the 
Record, as follows:

                                S. 1172

       Be it enacted by the Senate and House of Representatives of 
     the United States of America in Congress assembled,

     SECTION 1. SHORT TITLE.

       This Act may be cited as the ``Gynecologic Cancer Education 
     and Awareness Act of 2005'' or ``Johanna's Law''.

     SEC. 2. CERTAIN PROGRAMS REGARDING GYNECOLOGIC CANCERS.

       (a) National Public Awareness Campaign.--
       (1) In general.--The Secretary of Health and Human Services 
     (referred to in this section as the ``Secretary'') shall 
     carry out a national campaign to increase the awareness and 
     knowledge of women with respect to gynecologic cancers.
       (2) Written materials.--Activities under the national 
     campaign under paragraph (1) shall include--
       (A) maintaining a supply of written materials that provide 
     information to the public on gynecologic cancers; and
       (B) distributing the materials to members of the public 
     upon request.
       (3) Public service announcements.--Activities under the 
     national campaign under paragraph (1) shall, in accordance 
     with applicable law and regulations, include developing and 
     placing, in telecommunications media, public service 
     announcements intended to encourage women to discuss with 
     their physicians their risks of gynecologic cancers. Such 
     announcement shall inform the public on the manner in which 
     the written materials referred to in paragraph (2) can be 
     obtained upon request, and shall call attention to early 
     warning signs and risk factors based on the best available 
     medical information.
       (b) Demonstration Projects Regarding Outreach and Education 
     Strategies.--
       (1) In general.--The Secretary shall carry out a program to 
     make grants to nonprofit private entities for the purpose of 
     testing different outreach and education strategies to 
     increase the awareness and knowledge of women and health care 
     providers with respect to gynecologic cancers, including 
     early warning signs and treatment options. Such strategies 
     shall include strategies directed at physicians, nurses, and 
     key health professionals and families.
       (2) Preferences in making grants.--In making grants under 
     paragraph (1), the Secretary shall give preference--
       (A) to applicants with demonstrated expertise in 
     gynecologic cancer education or treatment or in working with 
     groups of women who are at especially high risk of 
     gynecologic cancers; and
       (B) to applicants that, in the demonstration project under 
     the grant, will establish linkages between physicians, 
     nurses, and key health professionals, hospitals, payers, and 
     State health departments.
       (3) Application for grant.--A grant may be made under 
     paragraph (1) only if an application for the grant is 
     submitted to the Secretary and the application is in such 
     form, is made in such manner, and contains such agreements, 
     assurances, and information as the Secretary determines to be 
     necessary to carry out this subsection.
       (4) Certain requirements.--In making grants under paragraph 
     (1)--
       (A) the Secretary shall make grants to not fewer than five 
     applicants, subject to the extent of amounts made available 
     in appropriations Acts; and
       (B) the Secretary shall ensure that information provided 
     through demonstration projects under such grants is 
     consistent with the best available medical information.
       (5) Report to congress.--Not later than February 1, 2009, 
     the Secretary shall submit to the Congress a report that--
       (A) summarizes the activities of demonstration projects 
     under paragraph (1);
       (B) evaluates the extent to which the projects were 
     effective in increasing early detection of gynecologic 
     cancers and awareness of risk factors and early warning signs 
     in the populations to which the projects were directed; and
       (C) identifies barriers to early detection and appropriate 
     treatment of such cancers.
       (c) Funding.--
       (1) National public awareness campaign.--For the purpose of 
     carrying out subsection (a), there is authorized to be 
     appropriated in the aggregate $15,000,000 for the fiscal 
     years 2006 through 2008.
       (2) Demonstration projects regarding outreach and education 
     strategies.--
       (A) Authorization of appropriations.--For the purpose of 
     carrying out subsection (b), there is authorized to be 
     appropriated in the aggregate $30,000,000 for the fiscal 
     years 2006 through 2008.
       (B) Administration, technical assistance, and evaluation.--
     Of the amounts appropriated under subparagraph (A), not more 
     than 9 percent may be expended for the purpose of 
     administering subsection (b), providing technical assistance 
     to grantees under such subsection, and preparing the report 
     under paragraph (5) of such subsection.
  Mr. OBAMA. Mr. President, I am pleased to join my colleagues Senators 
Specter and Harkin to introduce The Gynecological Cancer Education and 
Awareness Act of 2005, also known as Johanna's Law. This important 
legislation authorizes a national gynecologic cancer early detection 
and awareness campaign for women and their providers. This bill is 
named in honor of Johanna Silver Gordon who died from ovarian cancer 
and whose sister, Sheryl Silver, founded Johanna's Law Alliance for 
Women's Cancer Awareness. We thank Ms. Silver for her courage and her 
persistent efforts to turn her sister's tragedy into a crusade to raise 
awareness and prevent needless suffering and death from gynecologic 
cancers for other women.
  Nearly 80,000 American women are diagnosed with gynecologic cancers 
each year. Tragically, 29,000 of them die from this disease. We know 
that early detection is the key to successful treatment of all 
gynecologic cancers, and we have made great strides at reducing rates 
of cervical cancer with wide-spread use of Pap screening tests. Yet, we 
have not been able to replicate this success with uterine cancer and 
ovarian cancer, for which effective and general screening methods do 
not exist. For ovarian cancer, which is the deadliest of the 
gynecologic cancers, in addition to lack of screening tests, doctors 
and researchers have not identified effective diagnostic and 
treatments. Seventy percent of all new diagnoses of ovarian cancer take 
place after this cancer has progressed beyond its earliest and most 
survivable stage.
  Given these challenges, knowing the symptoms of gynecologic cancers, 
which can mimic GI illnesses, menopause or perimenopause, is key to 
early diagnosis. The 5-year survival rates for the most common 
gynecologic cancers are 90 percent when diagnosed early, but drop to 50 
percent for cancers diagnosed later.
  Johanna's Law will promote early detection and awareness through a 
National Public Awareness Campaign conducted by the Department of 
Health and Human Services. Women will be given written materials that 
provide information about gynecologic cancers, and Public Service 
Announcements will be developed to encourage women to talk to their 
doctors about gynecologic cancer. The Department will also give grants 
for demonstration projects to local and national non-profit 
organizations to identify the best ways to reach and educate women 
about these cancers, particularly those women who are high risk.
  Johanna's Law will make sure that women and doctors get the 
information they need to help them recognize early symptoms of 
gynecologic cancers, so that women can be diagnosed and treated earlier 
when their cancers are treatable. I urge my colleagues to work to move 
this legislation forward promptly.

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