Text: H.R.1591 — 113th Congress (2013-2014)

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Introduced in House (04/17/2013)


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[Congressional Bills 113th Congress]
[From the U.S. Government Printing Office]
[H.R. 1591 Introduced in House (IH)]

113th CONGRESS
  1st Session
                                H. R. 1591

To amend the Public Health Service Act to provide for the establishment 
   and maintenance of an undiagnosed diseases network, and for other 
                               purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             April 17, 2013

Mr. Carter (for himself, Mr. Burgess, Ms. Speier, Mr. King of New York, 
 Mr. McCaul, and Mr. Rangel) 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 
   and maintenance of an undiagnosed diseases network, 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 ``Charles August Long Undiagnosed 
Diseases Research and Collaboration Network Act of 2013'' or the ``CAL 
Undiagnosed Diseases Research and Collaboration Network Act of 2013''.

SEC. 2. CAL NETWORK OF UNDIAGNOSED DISEASES.

    Title III of the Public Health Service Act (42 U.S.C. 241 et seq.) 
is amended by inserting after section 317T the following:

``SEC. 317U. THE NATIONAL CAL NETWORK OF UNDIAGNOSED DISEASES.

    ``(a) Establishment.--The Secretary, acting through the Director of 
NIH, shall establish and maintain an undiagnosed diseases patient 
network (in this section referred to as the `CAL Network').
    ``(b) Purposes.--The purposes of the CAL Network shall be to--
            ``(1) provide physicians who are handling cases of 
        undiagnosed diseases with a means, consistent with applicable 
        privacy laws, including HIPAA privacy and security law (as 
        defined in section 3009(a)(2)), to search for similar cases and 
        to network and collaborate with the physicians handling such 
        similar cases in order to find a diagnosis and to improve 
        patient care and outcomes;
            ``(2) better enable and examine cross-disease research 
        whereby cases of undiagnosed diseases can be cross-referenced 
        against attributes of common diseases and rare diseases to 
        assist in the rendering of a diagnosis; elucidate 
        commonalities; identify atypical presentations, rare subgroups, 
        similar findings; and identify potential treatments;
            ``(3) better describe the types and prevalence of cases of 
        undiagnosed diseases in the United States;
            ``(4) make necessary data available to elucidate 
        appropriate factors (such as genetic, environmental, and 
        occupational factors) that may be associated with the various 
        types of cases of undiagnosed diseases reported by individuals 
        specified by the Director of NIH;
            ``(5) better outline key demographic factors (such as age, 
        race or ethnicity, gender, sex, geographic location, and family 
        medical history) of individuals who are undiagnosed;
            ``(6) provide such data necessary to better understand the 
        length of time for a diagnoses to be rendered in cases of 
        undiagnosed diseases and to identify barriers to diagnoses and 
        reasons for misdiagnosis of diseases; and
            ``(7) provide such information necessary to determine, in 
        order to improve access of individuals with undiagnosed 
        diseases throughout the United States (including those with 
        severe illnesses which limit or restrict travel) to programs 
        similar to the Undiagnosed Disease Program conducted at the 
        National Institutes of Health, if the needs and number of such 
        individuals support--
                    ``(A) the expansion of such Undiagnosed Disease 
                Program, as in existence as of the date of the 
                enactment of this section, to include the establishment 
                of additional undiagnosed diseases programs of like 
                scope and nature at other locations throughout the 
                United States; and
                    ``(B) the establishment by entities other than the 
                National Institutes of Health of separate undiagnosed 
                disease programs of like scope and nature to the 
                Undiagnosed Disease Program at locations throughout the 
                United States under the guidance of and through grants 
                provided by and through such Undiagnosed Diseases 
                Program.
    ``(c) Content of the CAL Network.--The Secretary shall include in 
the CAL Network such information respecting undiagnosed diseases as the 
Secretary deems appropriate for the purposes described in subsection 
(b) and other purposes to facilitate the early recognition, treatment, 
cure, and control of such diseases.
    ``(d) Availability.--
            ``(1) Design requirements.--Subject to paragraph (2), for 
        the purposes described in subsection (c) and consistent with 
        applicable privacy laws, including HIPAA privacy and security 
        law (as defined in section 3009(a)(2)), the Secretary shall 
        ensure that the CAL Network is designed in such a manner as 
        to--
                    ``(A) make the information in the CAL Network 
                available to appropriate health care professionals, 
                patients, and other qualified individuals and 
                organizations, as determined by the Secretary, who are 
                registered to access such network in accordance with 
                such process and requirements as specified by the 
                Secretary;
                    ``(B) make epidemiological and other types of 
                information obtained through the CAL Network available 
                to Federal agencies and health-related agencies;
                    ``(C) provide for different levels and types of 
                access to such network to be granted based on the 
                circumstances and individuals involved; and
                    ``(D) allow for an individual to have only the 
                level and type of access to the network so granted.
            ``(2) Information which may not be publically disclosed.--
        The design under paragraph (1) shall ensure that the following 
        information is not publicly disclosed:
                    ``(A) Individually identifiable information.
                    ``(B) Trade secrets or commercial or financial 
                information obtained from a person and privileged or 
                confidential, as provided in section 552(b)(4) of title 
                5, United States Code.
    ``(e) Grants.--The Secretary, acting through the Director of NIH, 
may award grants to, and enter into contracts and cooperative 
agreements with, public or private nonprofit entities for--
            ``(1) the collection, analysis, and reporting of data on 
        cases of undiagnosed diseases and other disorders that can 
        often go undiagnosed or be misdiagnosed as other diseases or 
        disorders; and
            ``(2) the establishment of separate undiagnosed disease 
        programs described in subsection (b)(7)(B).
    ``(f) Implementation Schedule.--In carrying out this section, the 
Secretary shall--
            ``(1) not later than 1 year after the date of the enactment 
        of this section, complete any study, research, and development 
        necessary to implement the CAL Network; and
            ``(2) complete the implementation of the CAL Network such 
        that it is fully operational by not later than September 30, 
        2015.
    ``(g) Undiagnosed Diseases Defined.--For purposes of this section, 
the term `undiagnosed disease' means a medically unexplained chronic 
multi-symptom disease that--
            ``(1) causes the decline of, limitations in, or cessation 
        of a person's developmental status, functional status, quality 
        of life, or any combination thereof;
            ``(2) has not been diagnosed by a medical specialist in a 
        tertiary medical center;
            ``(3) is defined by a cluster of signs or symptoms; which 
        by history, physical examination, and laboratory tests cannot 
        be attributed to any known clinical diagnosis;
            ``(4) is without conclusive pathophysiology or etiology;
            ``(5) is characterized by overlapping symptoms and signs; 
        or
            ``(6) exhibits an inconsistent demonstration of laboratory 
        abnormalities.
    ``(h) Authorization of Appropriations.--
            ``(1) In general.--To carry out this section, there are 
        authorized to be appropriated $5,000,000 for the period of 
        fiscal years 2014 through 2019.
            ``(2) Offset.--To offset amounts appropriated pursuant to 
        the authorization of appropriations in paragraph (1), the 
        Secretary shall reduce funds that would otherwise be obligated 
        and expended under the account heading `National Institutes of 
        Health-Office of the Director' by $5,000,000 for the period of 
        fiscal years 2014 through 2019.''.
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