H.R.4206 - Cancer Registries Amendment Act102nd Congress (1991-1992)
|Sponsor:||Rep. Sanders, Bernard [I-VT-At Large] (Introduced 02/07/1992)|
|Committees:||House - Energy and Commerce|
|Latest Action:||House - 02/28/1992 Referred to the Subcommittee on Health and the Environment. (All Actions)|
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Text: H.R.4206 — 102nd Congress (1991-1992)All Information (Except Text)
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Introduced in House
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.'.