Text: H.R.4206 — 102nd Congress (1991-1992)All Information (Except Text)

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HR 4206 IH
102d CONGRESS
2d Session
 H. R. 4206
To amend the Public Health Service Act to provide for the establishment
or support by States of registries regarding cancer, to provide for a study
regarding the elevated rate of mortality  for breast cancer in certain States,
and for other purposes.
IN THE HOUSE OF REPRESENTATIVES
February 7, 1992
Mr. SANDERS (for himself, Mr. MCDERMOTT, Mrs. MORELLA, Mr. DEFAZIO,
Mr. LAFALCE, Mr. MCGRATH, Mrs. JOHNSON of Connecticut, Mr. STAGGERS,
Mr. OWENS of New York, Mr. JONES of North Carolina, Mr. PAYNE of New Jersey,
Mr. TRAFICANT, Mr. LEHMAN of Florida, Ms. PELOSI, Mr. MFUME, Mr. MURPHY,
Mr. MARTINEZ, Mr. FASCELL, Mr. OBERSTAR, Mr. HORTON, Mr. SMITH of New Jersey,
Mr. KOLTER, Ms. KAPTUR, Mr. SAVAGE, Mr. EVANS, Mr. ROGERS, Mr. MILLER of
California, Mr. ANDREWS of Maine, Mr. DONNELLY, Mr. ANDREWS of New Jersey,
Mr. MRAZEK, Mr. TORRES, Ms. OAKAR, Mr. SANGMEISTER, Mr. SCHEUER, Mr. BERMAN,
Mr. CONYERS, Mr. LEVINE of California, Ms. WATERS, Mr. PETERSON of Minnesota,
Mr. FRANK of Massachusetts, Mr. LEWIS of Georgia, Mr. KANJORSKI, Mr. HAYES
of Illinois, Mr. ABERCROMBIE, Mr. KENNEDY, Mr. WISE, Mr. FLAKE, Mr. DELLUMS,
Mr. MAZZOLI, Mr. WYDEN, Mr. MATSUI, Mr. SCHUMER, Mr. JEFFERSON, Mr. ROYBAL,
Mr. RANGEL, and Mr. FROST) introduced the following bill; which was referred
to the Committee on Energy and Commerce
A BILL
To amend the Public Health Service Act to provide for the establishment
or support by States of registries regarding cancer, to provide for a study
regarding the elevated rate of mortality  for breast cancer in certain States,
and for other purposes.
  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 Registries Amendment Act'.
SEC. 2. FINDINGS AND PURPOSE.
  (a) FINDINGS- Congress finds that--
  (1) cancer control efforts, including prevention and early detection,
  are best addressed locally by State health departments that can identify
  unique needs;
  (2) cancer  control programs and existing statewide population-based
  cancer registries have identified cancer incidence and cancer mortality
  rates that indicate the burden of cancer for Americans is substantial and
  varies widely by geographic location and by ethnicity;
  (3) statewide cancer incidence and cancer mortality data, can be used
  to identify cancer trends, patterns, and variation for directing cancer
  control intervention;
  (4) the American Association of Central Cancer Registries (AACCR) cites
  that of the 50 States, approximately 38 have established cancer registries,
  many are not statewide and 10 have no cancer registry; and
  (5) AACCR also cites that of the 50 States, 39 collect data on less than
  100 percent of their population, and less than half have adequate resources
  for insuring minimum standards for quality and for completeness of case
  information.
  (b) PURPOSE- It is the purpose of this Act to establish a national program
  of cancer registries.
SEC. 2. ESTABLISHMENT OF A NATIONAL PROGRAM OF CANCER REGISTRIES.
  Title III of the Public Health Service Act (42 U.S.C. 241 et seq.), as
  amended by section 101 of Public Law 101-616, is amended by adding at the
  end the following new part:
`PART M--NATIONAL PROGRAM OF CANCER REGISTRIES
`SEC. 399B. NATIONAL PROGRAM OF CANCER REGISTRIES.
  `(a) IN GENERAL- The Secretary may make grants to States, or may make
  grants or enter into contracts with academic or non-profit organizations
  designated by the State to operate the State's cancer registry in lieu
  of making a grant directly to the State, to support the operation  of
  population-based, statewide cancer registries in order to collect, for
  each form of in-situ and invasive cancer with the exception of basal cell
  and squamous cell carcinoma of the skin, data concerning--
  `(1) demographic information about each case of cancer;
  `(2) administrative information, including date of diagnosis and source
  of information;
  `(3) pathological data characterizing the cancer, including the cancer site,
  stage of disease (Staging Guide), incidence, and type of treatment; and
  `(4) other elements determined appropriate by the Secretary.
  `(b) Matching Funds-
  `(1) IN GENERAL- The Secretary may make a grant under subsection (a) only
  if the State involved agrees, with respect to the costs of the program to
  be carried out by the State pursuant to such subsection, to make available
  (directly or through donations from public or private entities) non-Federal
  contributions toward such costs in an amount that is not less than 25 percent
  of such costs or $1 for every $3 of Federal funds provided in the grant.
  `(2) Determination of amount of non-federal contribution; maintenance
  of effort-
  `(A) Non-Federal contributions required in paragraph (1) may be in cash or
  in kind, fairly evaluated, including plant, equipment, or services. Amounts
  provided by the Federal Government, or services assisted or subsidized to
  any significant extent by the Federal Government, may not be included in
  determining the amount of such non-Federal contributions.
  `(B) With respect to a State in which the purpose described in subsection
  (a) is to be carried out, the Secretary, in making a determination of
  the amount of non-Federal contributions provided under paragraph (1),
  may include only such contributions as are in excess of the average amount
  of such contributions made by the State toward the collection of data on
  cancer for the 2-year period preceding the first fiscal year for which
  a grant under subsection (a) is made with respect to the State. State
  contributions towards cancer control prevention services made during fiscal
  year 1992 shall be included in satisfying the State matching requirement
  for the initial fiscal year during which this section is in effect.
  `(c) Eligibility for Grants-
  `(1) IN GENERAL- No grant shall be made by the Secretary under subsection
  (a) unless an application therefore has been submitted to, and approved
  by, the Secretary. Such application shall be in such form, submitted in
  such a manner, and be accompanied by such information, as the Secretary
  may specify. No such application may be approved unless it contains
  assurances that the applicant will use the funds provided only for the
  purpose specified in the approved application and in accordance with the
  requirements of this section, and that the application will establish such
  fiscal control and fund accounting procedures as may be necessary to assure
  proper disbursement and accounting of Federal funds paid to the applicant
  under subsection (a) of this section.
  `(2) ASSURANCES- Each applicant, prior to receiving Federal funds under
  subsection (a), shall provide assurances satisfactory to the Secretary
  that the applicant will--
  `(A) provide for the establishment of a statewide population-based cancer
  registry by the State health department, or by one or more academic health
  centers, nonprofit cancer research and prevention organizations, or medical
  societies acting in collaboration with the State health department;
  `(B) comply with appropriate standards of completeness, timeliness, and
  quality or population-based cancer registry data;
  `(C) provide for the annual publication of reports of cancer data under
  subsection (a); and
  `(D) provide for the authorization under State law of the statewide cancer
  registry, including--
  `(i) a means to assure complete reporting of cancer cases (as described in
  subsection (a)) to the statewide cancer registry by hospitals or other
  facilities providing screening, diagnostic or therapeutic services to
  patients;
  `(ii) a means to assure the complete reporting of cancer cases (as defined
  in subsection (a)) to the statewide cancer registry by physicians, surgeons,
  and all other health care practitioners diagnosing or providing treatment
  for cancer patients, except for cases directly referred to or previously
  admitted to a hospital or other facility providing screening, diagnostic
  or therapeutic services to patients in that State and reported by those
  facilities;
  `(iii) a means for the statewide cancer registry to access all records of
  physicians and surgeons, hospitals, outpatients clinics, nursing homes,
  and all other facilities, individuals, or agencies providing screening,
  diagnostic or therapeutic services to patients which would identify cases
  of cancer or would establish characteristics of the cancer, treatment of
  the cancer, or medical status of any identified patient;
  `(iv) the reporting of cancer case data to the statewide cancer registry
  in such a format, with such data elements, and in accordance with such
  standards of quality timeliness and completeness, as may be established
  by the Secretary;
  `(v) the protection of the confidentiality of all cancer case data reported
  to the statewide cancer registry, including a prohibition on disclosure
  to any person of information report to the statewide cancer registry that
  identifies, or could lead to the identification of, an individual cancer
  patient, except for disclosure to other States cancer registries and local
  and State health officers;
  `(vi) the promulgation of regulations under which confidential case data may
  be disclosed to cancer researchers for the purposes of cancer prevention,
  control and research;
  `(vii) the authorization or the conduct, by the statewide cancer registry
  or other persons and organizations, of studies utilizing statewide cancer
  registry data, including studies of the sources and causes of cancer,
  evaluations of the cost, quality, efficacy, and appropriateness of
  diagnostic, therapeutic, rehabilitative, and preventive services and
  programs relating to cancer, and any other clinical, epidemiological,
  or other cancer research; and
  `(viii) protection for individuals complying with the law, specifically that
  no person shall be held liable in any civil action with respect to a cancer
  case report provided to the statewide cancer registry, or with respect to
  access to cancer case information provided to the statewide cancer registry.
  `(d) RELATIONSHIP TO CERTAIN PROGRAMS- This section may not be construed
  as requiring the Secretary to modify or terminate the program carried
  out by the Director of the National Cancer Institute and designated by
  such Director as the Surveillance, Epidemiology, and End Results Program
  (SEER). Where both programs exist, the Secretary shall ensure the SEER
  support is not supplanted and that any additional activities are consistent
  with the guidelines provided for in subsection (c)(2) (C) and (D). The
  Secretary may not transfer administration responsibility for such SEER
  program from such Director.
  `(e) REQUIREMENT REGARDING CERTAIN STUDY ON BREAST CANCER- In the case of
  a grant under subsection (a) to any State specified in section 399D(a)(2),
  the Secretary may establish such conditions regarding the receipt of the
  grant as the Secretary determines are necessary to facilitate the collection
  of data for the study carried out under section 399C.
`SEC. 399C. PLANNING GRANTS REGARDING REGISTRIES.
  `(a) In General-
  `(1) STATES- The Secretary may make grants to States for the purpose of
  developing plans that meet the assurances required by the Secretary under
  section 399B(c)(2).
  `(2) OTHER ENTITIES- For the purpose described in paragraph (1), the
  Secretary may make grants to public entities other than States and to
  nonprofit private entities. Such a grant may be made to an entity only
  if the State in which the purpose is to be carried out has certified that
  the State approves the entity as qualified to carry out the purpose.
  `(b) APPLICATION- The Secretary may make a grant under subsection (a)
  only if an application for the grant is submitted to the Secretary, the
  application contains the certification required in subsection (a)(2) (if
  the application is for a grant under such subsection), 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.
  `(c) FUNDING- Of the amounts appropriated under section 399F for a fiscal
  year, the Secretary may obligate not more than 25 percent for carrying
  out this section.
`SEC. 399D. STUDY IN CERTAIN STATES TO DETERMINE THE FACTORS CONTRIBUTING
TO THE ELEVATED BREAST CANCER MORTALITY RATES.
  `(a) Finding-
  `(1) IN GENERAL- Congress finds that the Director of the National Cancer
  Institute has determined that the rates of mortality for breast cancer in
  the States specified in paragraph (2) are elevated compared to rates in
  other States.
  `(2) RELEVANT STATES- The States referred to in paragraph (1) are
  Connecticut, Delaware, Maryland, Massachusetts, New Hampshire, New Jersey,
  New York, Rhode Island, Vermont, and the District of Columbia.
  `(b) Study to Determine the Factors Contributing to Elevated Mortality Rates-
  `(1) IN GENERAL- Subject to paragraphs (2) and (3), the Secretary shall
  conduct a study for the purpose of determining factors contributing to
  the determination described in subsection (a) with respect to the States.
  `(2) COOPERATION OF STATE- The Secretary may conduct a study required in
  paragraph (1)  in a State only if the State agrees to cooperate with the
  Secretary in the conduct of the study, including providing information
  from any registry operated by the State pursuant to section 399B(a).
  `(3) PLANNING, COMMENCEMENT, AND DURATION- The Secretary shall, during each
  of the fiscal years 1993 and 1994, develop a plan for conducting the study
  required in paragraph (1). The study shall be initiated by the Secretary
  not later than fiscal year 1994, and the collection of data under the
  study may continue through fiscal year 1998.
  `(4) REPORT- Not later than September 30, 1999, the Secretary shall complete
  the study required in paragraph (1) and submit to the appropriate committees
  of Congress the findings and recommendations made as a result of the study.
  `(5) DEFINITION- As used in this subsection, the term `relevant State'
  means a State specified in subsection (a)(2).
`SEC. 399E. TECHNICAL ASSISTANCE IN OPERATIONS OF STATEWIDE CANCER REGISTRIES.
  `The Secretary may, directly or through grants and contracts, or both,
  provide technical  assistance to the States in the establishment and
  operation of statewide registries, including assistance in the development
  of model legislation for statewide cancer registries and assistance in
  establishing a computerized reporting and data processing system.
`SEC. 399F. AUTHORIZATION OF APPROPRIATIONS.
  `(A) REGISTRIES- For the purpose of carrying out this part, there  are
  authorized to be appropriated $30,000,000 for each of fiscal years 1993
  through 1999, not more than 10 percent of which may be expended for
  assessing the accuracy, completeness and quality of data collected, and
  not more than 10 percent of which is to be expended under subsection 399E.
  `(b) BREAST CANCER STUDY- For the purpose of carrying out section 399D,
  the Secretary shall submit to the appropriate committees of  Congress,
  a 5-year study plan and budget for each of fiscal years 1994 through 1999.'.