[Congressional Record Volume 149, Number 115 (Wednesday, July 30, 2003)]
[Senate]
[Pages S10270-S10272]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mrs. HUTCHISON (for herself, Mr. Kennedy, Mrs. Feinstein, and 
        Mr. Harkin):
  S. 1496. A bill to provide for the expansion and coordination of 
activities of the National Institutes of Health and the Centers for 
Disease Control and Prevention with respect to research and programs on 
cancer survivorship, and for other purposes; to the Committee on 
Health, Education, Labor, and Pensions.
  Mrs. HUTCHISON. Mr. President, today I would like to pay tribute to a 
great Texan and a great American, Lance Armstrong. Last weekend, Lance 
sailed to his fifth consecutive victory in the Tour de France. On the 
heels of his stunning victory, I am pleased to introduce the Cancer 
Survivorship Research and Quality of Life Act of 2003.
  To some, Lance's victories might begin to seem routine, winning year 
after year after year. But when you dig beneath the surface, past the 
hype and drama of the Tour de France, you find that there's nothing 
routine about Lance Armstrong.
  By now, nearly everyone knows that Lance is a cancer survivor. It has 
become common knowledge, not because Lance uses it as an excuse or to 
seek sympathy. We know it because Lance has used his megaphone as a 
sports hero to raise awareness of cancer research and survivorship. He 
has dedicated himself to helping others and turning his personal 
devastation into a legacy of hope for those afflicted with cancer. When 
he was diagnosed, he was given a 40 percent chance of living. His 
survival and amazing comeback have proved that cancer is not a death 
sentence.
  Sixty-two percent of adults and 77 percent of children diagnosed with 
cancer this year will be alive 5 years from now. There are more than 9 
million cancer survivors living today. These numbers are improving 
because of advances in detection and early diagnosis, effective 
treatments, and healthier lifestyles by survivors and those at risk.
  We must continue our commitment to research so fewer people will 
experience cancer.
  The bill I am introducing today expands cancer research by 
authorizing the Office of Cancer Survivorship within the National 
Cancer Institutes to study the long- and short-term physical 
psychological, social and economic effects of cancer. Research has 
shown that cancer survivors are often susceptible to other diseases. 
Expanding on this research will allow scientists and physicians to 
improve patients' quality of life and help prevent other diseases and 
disabilities.
  Additionally, the bill expands the Centers for Disease Control 
programs to improve cancer survivorship. For example, the CDC will 
track the status of survivors to identify what health risks they face 
and the successful course of treatment they have utilized. Other 
programs will demonstrate how to prevent and control cancer, especially 
in medically underserved populations.
  This legislation has the support of CDC and NCI. It also has the 
support of Lance Armstrong.
  I have been privileged to meet with Lance on several occasions. He 
has never boasted of his athletic feats or touted his ability to master 
the world's toughest bicycle race. He speaks with passion of the Lance 
Armstrong Foundation and the work it does on behalf of cancer survivors 
and their families. When he mounts his bike each summer it is a symbol 
of hope for cancer survivors the world over.
  This year's Tour de France was no exception. Many predicted Lance's 
defeat and he had to overcome illness, fatigue and crashes to reach the 
finish line. But he never gave up. The trademark dedication and 
perseverance that characterize him as an athlete and a survivor kicked 
in once again. He pedaled to victory over the course of 3 weeks, more 
than 2,100 miles and 84 hours of cycling, winning with a lead of 1 
minute and 1 second.
  It was truly a stunning end to a remarkable race.
  The record-tying fifth consecutive win places Lance among cycling's 
elite. Only four others can claim five-time winner of the Tour de 
France among their accolades. Only one other man has won it 
consecutively. If Lance wins the yellow jersey next year, it would be a 
world record. But whether he breaks the record or not, he is a hero to 
all of us.
  I ask my colleagues to join me in congratulating Lance Armstrong on a 
great victory and signing on as co-sponsors to this important 
legislation to help carry his message of survivorship to the Nation.
  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. 1496

       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 ``Cancer Survivorship Research 
     and Quality of Life Act of 2003''.

     SEC. 2. FINDINGS.

       The Congress finds as follows:
       (1) There are more than 9,600,000 individuals in the United 
     States today who are cancer survivors (living with, through, 
     and beyond cancer).
       (2) 61 percent of cancer survivors are 65 years of age and 
     older.
       (3) 62 percent of adults diagnosed with cancer today will 
     be alive 5 years from now.
       (4) In 1960, 4 percent of children with cancer survived 
     more than 5 years.
       (5) 77 percent of children (age 0 through 14) diagnosed 
     with cancer today will be living five years from now.
       (6) Three out of every four American families will have at 
     least one family member diagnosed with cancer.
       (7) 24 percent of adults with cancer are parents who have a 
     child 18 years or younger living in the home.
       (8) One of every four deaths in the United States is from 
     cancer. In 2002, 556,500 Americans will die of cancer--more 
     than 1,500 people a day.
       (9) The annual cost of cancer in the United States is 
     $180,000,000,000 in direct and indirect costs.
       (10) In fiscal year 2001 the National Institutes of Health 
     invested $38,000,000 in survivorship--less than $4.25 per 
     survivor.

     SEC. 3. CANCER CONTROL PROGRAMS.

       Section 412 of the Public Health Service Act (42 U.S.C. 
     285a-1) is amended--
       (1) in the first sentence, by inserting ``, for 
     survivorship,'' after ``treatment of cancer'';
       (2) in paragraph (1)(B), by striking ``cancer patients'' 
     and all that follows and inserting the following: ``cancer 
     patients, families of cancer patients, and cancer survivors, 
     and''; and
       (3) in paragraph (3), by inserting ``and concerning cancer 
     survivorship programs,'' after ``control of cancer''.

     SEC. 4. EXPANSION AND COORDINATION OF ACTIVITIES OF NATIONAL 
                   INSTITUTES OF HEALTH WITH RESPECT TO CANCER 
                   SURVIVORSHIP RESEARCH.

       (a) In General.--
       (1) Technical amendment.--Section 3 of Public Law 107-172 
     (116 Stat. 541) is amended by striking ``section 419C'' and 
     inserting ``section 417C''.
       (2) New section.--Subpart 1 of part C of title IV of the 
     Public Health Service Act (42 U.S.C. 285 et seq.), as amended 
     pursuant to paragraph (1) of this subsection, is amended by 
     adding at the end the following:

     ``SEC. 417E. EXPANSION AND COORDINATION OF ACTIVITIES WITH 
                   RESPECT TO CANCER SURVIVORSHIP RESEARCH.

       ``(a) In General.--
       ``(1) Expansion of activities.--The Director of NIH shall 
     expand and coordinate the activities of the National 
     Institutes of Health with respect to cancer survivorship 
     research.
       ``(2) Administration of program; collaboration among 
     agencies.--The Director of NIH shall carry out this section 
     acting through the Director of the National Cancer Institute 
     and in collaboration with any other agencies that the 
     Director determines appropriate.
       ``(b) Office on Survivorship.--
       ``(1) In general.--The Director of NIH shall establish an 
     Office on Cancer Survivorship within the National Cancer 
     Institute through which the activities under subsection 
     (a)(1) shall be implemented and directed.
       ``(2) Associate director for cancer survivorship; 
     appointment; function.--There shall be in the National Cancer 
     Institute an Associate Director for Cancer Survivorship to 
     coordinate and promote the programs in the Institute 
     concerning cancer survivorship

[[Page S10271]]

     research. The Associate Director shall be appointed by the 
     Director of the Institute from among individuals who, because 
     of their professional training or experience, are equipped to 
     address the breadth of needs associated with cancer 
     survivorship.''.
       (b) Funding.--Section 417B of the Public Health Service Act 
     (42 U.S.C. 285a-8) is amended by adding at the end the 
     following:
       ``(e) Office on Cancer Survivorship.--Of the amounts 
     appropriated for the National Cancer Institute for a fiscal 
     year, the Director of the Institute shall reserve an amount 
     for the Office of Cancer Survivorship under section 
     417E(b)(1).''.

     SEC. 5. EXPANSION OF CDC COMPREHENSIVE CANCER PROGRAMS; 
                   PROGRAMS TO IMPROVE CANCER SURVIVORSHIP.

       (a) In General.--The Secretary of Health and Human Services 
     (referred to in this section as the ``Secretary''), acting 
     through the Director of the Centers for Disease Control and 
     Prevention, shall--
       (1) expand and update the National Comprehensive Cancer 
     Control Program;
       (2) assist States, territories, tribal organizations, and 
     the District of Columbia in developing and implementing a 
     cancer prevention and control program so that each entity 
     will have an active plan in place and so that States, 
     territories, tribal organizations, and the District of 
     Columbia will conduct activities to prevent and control 
     cancer and so that disparities in specific populations will 
     be addressed;
       (3) establish programs that demonstrate how to prevent and 
     control cancer and improve access to and the quality of 
     cancer care among racial and ethnic minority and medically 
     underserved populations with disproportionate incidence of or 
     death from cancer;
       (4) promote cancer education, prevention, and early 
     detection of cancer; and
       (5) award grants to public and nonprofit organizations for 
     cancer control and prevention.
       (b) Certain Studies and Programs.--
       (1) In general.--The Secretary, acting through the Director 
     of the Centers for Disease Control and Prevention and in 
     collaboration with the Director of the Office of Cancer 
     Survivorship within the National Cancer Institute, shall 
     study the unique health challenges associated with cancer 
     survivorship and carry out projects and interventions to 
     improve the long-term health status of cancer survivors. Such 
     projects shall be carried out directly and through the awards 
     of grants or contracts.
       (2) Certain activities.--Activities under paragraph (1) 
     include--
       (A) the expansion, in collaboration with the Surveillance, 
     Epidemiology, and End Results Program (SEER) at the National 
     Cancer Institute and with the Agency for Healthcare Research 
     and Quality, of current cancer surveillance systems to track 
     the health status of cancer survivors and determine whether 
     cancer survivors are at-risk for other chronic and disabling 
     conditions;
       (B) assess the unique public health challenges associated 
     with cancer survivorship; and
       (C) the development and implementation of a national public 
     health cancer survivorship action plan, in partnership with 
     health organizations focused on cancer survivorship, to be 
     carried out in coordination with the State-based 
     comprehensive cancer control program of the Centers for 
     Disease Control and Prevention, in collaboration with the 
     Office of Cancer Survivorship at the National Cancer 
     Institute, and in consultation with other appropriate 
     entities, to support and advance cancer survivorship 
     through--
       (i) surveillance and research;
       (ii) communication, education, and training;
       (iii) program, policies, and infrastructure; and
       (iv) access to quality care and services.
       (c) Coordination of Activities.--The Secretary shall assure 
     that activities under this section are coordinated as 
     appropriate with other agencies of the Public Health Service.
       (d) Report to Congress.--Not later than October 1, 2004, 
     the Secretary shall submit to the Congress a report 
     describing the results of the evaluation under subsection 
     (a), and as applicable, the strategies developed under such 
     subsection.
       (e) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there are authorized to be 
     appropriated such sums as may be necessary for each of the 
     fiscal years 2004 through 2008.

     SEC. 6. MONITORING AND EVALUATING QUALITY CANCER CARE AND 
                   CANCER SURVIVORSHIP.

       (a) In General.--Part M of title III of the Public Health 
     Service Act (42 U.S.C. 280e et seq.) is amended by inserting 
     after section 399E the following:

     ``SEC. 399E-1. MONITORING AND EVALUATING QUALITY CANCER CARE 
                   AND CANCER SURVIVORSHIP.

       ``(a) In General.--The Secretary shall make grants to 
     eligible entities for the purpose of enabling such entities 
     to monitor and evaluate quality cancer care, develop 
     information concerning quality cancer care, and monitor 
     cancer survivorship. The Secretary shall carry out this 
     section jointly through the Director of the Centers for 
     Disease Control and Prevention and the Director of the 
     National Cancer Institute.
       ``(b) Eligible Entities.--For purposes of this section, an 
     entity is an eligible entity for a fiscal year if the 
     entity--
       ``(1) operates a statewide cancer registry with funds from 
     a grant made under section 399B for such fiscal year;
       ``(2) is certified by the North American Association of 
     Central Cancer Registries;
       ``(3) has personnel scientifically qualified to conduct 
     population-based epidemiology or analyze health services or 
     outcomes research; and
       ``(4) has access to a broad-based clinical research cohort 
     or an established clinical case base.
       ``(c) Contracting Authority.--In carrying out the purpose 
     described in subsection (a), an eligible entity may expend a 
     grant under such subsection to enter into contracts with 
     academic institutions, cancer centers, and other entities, 
     when determined appropriate by the Secretary.
       ``(d) Application for Grant.--A grant may be made under 
     subsection (a) 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 section.
       ``(e) Authority of Secretary Regarding Use of Grant.--The 
     Secretary shall determine the appropriate uses of grants 
     under subsection (a) to achieve the purpose described in such 
     subsection.
       ``(f) Authorization of Appropriations.--For the purpose of 
     carrying out this section, there are authorized to be 
     appropriated such sums as may be necessary for each of the 
     fiscal years 2004 through 2008.''.
       (b) Conforming Amendment Regarding Authorization of 
     Appropriations.--Section 399F(a) of the Public Health Service 
     Act (42 U.S.C. 280e-4(a)) is amended in the first sentence by 
     striking ``this part,'' and inserting ``this part (other than 
     section 399E-1),''.

  Mr. KENNEDY. Mr. President, it is a privilege to join my colleagues 
Senator Hutchison, Senator Harkin and Senator Feinstein in introducing 
the Cancer Survivorship and Quality of Life Act. It is fitting that we 
are introducing this important legislation today. Just three days ago, 
as the world knows, Lance Armstrong, the champion cyclist from Texas, 
won his 5th consecutive Tour de France. His triumph is an extraordinary 
achievement in and of itself, and it is even more extraordinary, 
because just 6 years ago, he was diagnosed with a form of cancer--
testicular cancer--that is often curable when detected early, but that 
in his case had already spread to his abdomen, his lungs, and brain. 
Twenty-five years ago, he probably would not have survived. But with 
the treatment and therapy now available and the same fighting spirit 
that made him a winner yesterday, he won the battle against cancer and 
became a worldwide symbol of courage and achievement.
  His success is also a vivid symbol of the rapid progress being made 
in the ongoing battle against cancer. Never before have there been such 
high rates of survival for what used to be an overwhelmingly deadly 
disease. Cancer research has brought new and more sensitive screening 
tests and more accurate and less invasive diagnostic procedures. 
Greater arrays of treatments are available that can cure cancer 
completely or keep it at bay for many years.
  As a result of these medical and technological advances, over half of 
all adults and over three-quarters of all children diagnosed with 
cancer today will be living five years from now and often far longer. 
Experts now refer to many forms of cancer as ``chronic diseases'' 
illnesses that never go away, but can be treated in ways enabling 
patients to focus on living instead of preparing for death.
  In the United States today, there are almost 10 million cancer 
survivors, and 40 percent of them are younger than 65. The financial 
cost is large. Direct costs for cancer care and the indirect costs to 
the economy are now estimated at $180 billion dollars per year. But 
more important than the financial costs are the devastating personal 
and emotional costs to the patients, their families and loved ones, and 
their caregivers as well. Almost a quarter of adults with cancer are 
parents who have a child 18 years old or younger living at home. Nearly 
1.3 million people will be diagnosed with cancer this year--3,500 
persons each and every day.
  The National Cancer Institute and other federal agencies now devote 
the majority of their funds to diagnosing and treating cancer, and we 
need to continue strong federal support for these purposes. Greater 
support is clearly needed to deal with the issues affecting survivors. 
Many cancer survivors say that equally important is the ``non-medical'' 
care that they have received, and that is the purpose of the bill we 
are introducing today.

[[Page S10272]]

  The Cancer Survivorship Research and Quality of Life Act creates a 
Cancer Survivorship Office in the National Institutes of Health and a 
Cancer Control Center in the Centers for Disease Control and Prevention 
to develop effective ways to improve the quality of life for patients 
with cancer and their families. Such efforts include education of 
patients about their cancer, their options for treatment, and how and 
when to ask for a second opinion. They also include information about 
support networks and other services in their community.
  Under our bill, the Centers for Disease Control and the National 
Cancer Institute will work together to expand their data collection to 
include information about survivors and improvements in the care of 
individuals newly diagnosed with cancer, such as successful treatments, 
rehabilitation, and nutritional and exercise programs. Currently, there 
is no effective way for new information to be widely shared. Patients 
who are cancer survivors or who have family members or loved ones with 
cancer understand the importance of this information. We introduce this 
bill with the full support of the Lance Armstrong Foundation, which has 
brought the issue of cancer survivorship to our national attention. I 
urge the Senate to give our legislation the priority it deserves.
                                 ______