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NINETEENTH CONGRESS                  )
REPUBLIC OF THE PHILIPPINES    )
First Regular session                            )
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EXPLANATORY NOTE
Article  13, Section  12 of the  1987 Philippine Constitution provides that:
"The     State     shall     establish     and
maintain     an     effective     food     and     drug
regulatory system and  undertake appropriate
health manpower development and research,
responsive to the country's health needs and
problems."
ln  the  United  States  and  other  countries,  a  number  of  privately  funded  voluntary
health agencies continue to research on  possible treatment of dystonia.  However,  research
on dystonia in our country remains minimal, or even negligible.
The fact that it has afflicted  hundreds of Filipinos,  and that the neurological disorder
is  genetic,  is  a  cause  of concern.  The  government  must  help  curb  the  growing  cases  of
dystonia.
Not a single treatment has been found to be universally effective, and doctors would
normally resort to therapies to reduce or eliminate the muscle spasms and pain that patients
suffer.
This  bill  seeks to aid  and  promote  research  on the causes of dystonia so that they
can be prevented, and that effective treatment can be found.
Hence, the early passage of this proposed measure is highly recommended.


NINETEENTH CONGRESS                  )
REPUBLIC OF THE PHILIPPINES    )
First Regular session                           )
HOUSE OF REPRESENTATIVES
Introduced by Representative Rufus a. Rodriguez
House Bill No.  E316
AN ACT
PROMOTING RESEARCH ON DYSTONIA
Be it enacted  by the Senate and  House of Representatives of the Philippines in Congress
assembled:
SECTION  1.  Short  Ti.t/e  -This  Act  shall  be  known  as  the  "Dysfoni.a  Research  and
Information Act."
SEC 2.  Dec/arafi.on of po/i.cy -The Constitution, Article 13, Section 12 mandates the State
to  undertake  appropriate  health  manpower  development  and  research  responsive  to  the
country's  health  needs  and  problems.  Taking  into  account  this  mandate,  the  State  shall
promote research for the prevention and treatment of dystonia.
SEC 3.  Deffn/.li-on of Terms - For purposes of this Act, the term:
(a) "Secretary" shall refer to the Secretary of the Department of Health;
(b)  "Dystonia"   shall   refer  to  the   movement  disorder  in  which   sustained   muscle
contractions    cause   twisting    and    repetitive    movements    or   abnormal    postures.    The
movements,  which  are  involuntary  and  sometimes  painful,  may  affect  a  single  muscle,  a
group of muscles such as those in the arms, legs, or neck, or the entire body;
(c) "Committee" refers to the Committee on Dystonia Research.
SEC 4. Dysfoni.a Research -The Secretary shall conduct or support research to expand the
understanding of dystonia. Such research shall:
(a)                 if  determined  to  be  scientifically  appropriate,  include  a  multidisciplinary,
(b)
(c)
clinical, case-controlled study of dystonia patients;
involve  families  of  persons  who  suffer  from  dystonia,  focus  on  atypical
disease   presentation,   neurological   dysfunction,   diminished   intelligence
and emotional imbalance;
evaluate to what extent,  if any, their health differs from other patients with
neurological disorders.
SEC 5.  Commi.flee on Dysfoni.a Research - To assist the Secretary in receiving accurate
and complete information about dystonia,  its symptoms, origin, classification,  prevention and
treatment,  there  shall  be  established  a  committee,  to  be  known  as  the  Committee  on
Dystonia  Research,  to ensure the strategic management,  communication,  and  oversight of
the policy formation, research, and activities of the government regarding dystonia.
SEC 6. Composition -
(1 ) The Committee shall be composed of nine (9) members:
(A) Two (2) representatives from the Department;
(8)  One  (1)  representative  of  any  other  agencies  necessary  to  accomplish  the
purpose of the Committee;
(C)  Four  (4)  physicians  or  practitioners  with  established  credentials  in  the  area  of
neurological disorders; and


(D)   Two   (2)   immediate   relatives   of  dystonia   patients   to   be   appointed   by   the
Secretary.
(2) The Secretary shall act as the Chair of the Committee.  He shall convene meetings of the
Committee,  not less than twice each year,  and  compile information for the consideration of
the full Committee at such meetings.
SEC 7.  Meeti`ngs. - The meetings of the Committee shall  be open to the public and  public
witnesses shall be given the opportunity to speak and make presentations at such meetings.
Each  member shall  make a  presentation to the Committee at each meeting concerning the
activities conducted by such member.
SEC 8. Term of Office-. Members shall be appointed by the Secretary for a term of three (3)
years.  Of those first appointed, three (3) members shall serve for three (3) years,  three (3)
members for two (2) years, and the last three (3) members for one (1 ) year.
Any vacancy in the membership of the Committee shall be filled  in the same manner
as the original appointment.
Any  member  of  the  Committee  may  be  removed  for  cause  in  accordance  with
procedures established by the Committee.
SEC 9. Funcfi.ons -The Committee shall have the following functions:
(A) Advise the Secretary on appropriate research activities to be  undertaken  by the
Office with respect to research on dystonia, its prevention and
treatment;
(8) Report to the Secretary on such research;
(C) Provide recommendations to the Secretary regarding activities of the
Committee;
(D) Prepare a report regarding the activities of the Committee; and
(E)   Ensure   that   materials   concerning   dystonia   are   available,   up   to   date,   and
responsive to reports of problems with dystonia,  and that timely aggregate data concerning
such reports shall be made available to the public upon request and consistent with existing
confidentiality standards.
SEC  10. Approprr.affons -To carry out the provisions of this Act, such amount as may be
necessary is  hereby authorized  to  be appropriated from  the  National Treasury.  Thereafter,
the amount necessary for the continuous operation of the research shall  be  included  in the
annual appropriation of the Department of Health.
SEC   11.   Separabi./i.fy   C/ause   -   lf   any   provision   or   part   hereof   is   held   invalid   or
unconstitutional,  the  remainder  of  the  law  or  the  provision  not  otherwise  affected  shall
remain valid and subsisting.
SEC  12.  Repea//`ng  C/ause -Any  law,  presidential  decree  or  issuance,  executive  order,
letter of instruction, administrative order, rule or regulation contrary to or inconsistent with the
provision of this Act is hereby repealed, modified or amended accordingly.
SEC  13.  Effect/-vr/.fy C/ause -This Act shall take effect fifteen (15) days after its publication
in at least two (2) newspapers of general circulation.
Approved,