Republic of the Philippines
HOUSE OF REPRESENTATIVES
Quezon City

Seventeenth Congress
First Regular Session

RWS OG

Introduced by Representative H. Harry L. Roque Jr.

EXPLANATORY NOTE
The Constitution, Article XIII, Section 12, provides:
‘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.

In 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.

Not a single treatment has been found to be universally effective, and doctors would
normally resort to therapies to reduce or eliminate muscle spasms and pain that patients
suffer

This bill seeks to aid and promote research on the causes of dystonia so that they can

Chu

H. HARRY L. ROQUE JR.

be prevented and that effective treatment can be found *

* This bill was originally filed by Senator Miriam Defensor Santiago during the Sixteenth Congress, First
Regular Session


Republic of the Philippines
HOUSE OF REPRESENTATIVES

Quezon City

Seventeenth Congress
First Regular Session

HOUSE OF REPRESENTATIVES
HB. No 0

Introduced by Representative H. Harry L. Roque Jr.

AN ACT
PROMOTING RESEARCH ON DYSTONIA

Be it enacted by the Senate and the House of Representatives of the Philippines in
Congress assembled:
SECTION 1. Short Title. — This Act shall be known as the “Dystonia Research and

Information Act.”

SECTION 2. Declaration of Policy. ~ The Constitution provides that the State shall
undertake appropriate health manpower development and research responsive to the
country’s health needs and problems. Pursuant to this policy, it shall promote research for the
Prevention and treatment on dystonia.

SECTION 3. Definition of Terms. — For purposes of this Act, the term:

(A) “Secretary” shall refer to the Secretary of 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


we

muscle, a group of muscles, such as those in the arms, legs, or neck, or the entire

body; and
(C) “Committee” refers to the Committee on Dystonia Research.

SECTION 4, Dystonia 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,
clinical, and case-controlled study of dystonia patients;

(B) Involve families of persons who suffer from dystonia, focus on atypical disease
presentation, neurological dysfunction, diminished intelligence, and emotional
imbalance; and

(C) Evaluate to what extent, if any, their health differs from other patients with
neurological disorders.

SECTION 5. Committee on Dystonia 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.

SECTION 6. Composition. — The Committee shall be composed of nine (9)
members:

(A) Two (2) representatives from the Department of Health;


8

(B) One (1) representative from any other government agency 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.

‘The Secretary shall act as chair of the Committee. He shall convene meetings of the

Committee, not less than twice @ year, and compile information for the consideration of the

full Committee at such meetings.

SECTION 7. Meetings. - The meetings of the Committee shall be open to the public
and public witnesses shall be given opportunity to speak and make presentations at such
meetings. Each member shall make a presentation to the full Committee at each meeting
concerning the activities conducted by such member.

SECTION 8. Term. - Members shall be appointed by the Secretary for « 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.

SECTION 9. Functions. ~The Committee shall have the following functions:
(A) Advise the Secretary on appropriate research activities to be undertaken by the

Committee with respect to research on dystonia, its prevention, and treatment,


(B) Report to the Secretary on such research,

(C) Provide recommendations to the Secretary regarding the acti
Committee;

(D) Prepare a report regarding the activities of the Committee;

(E) Ensure that materials concerning dystonia provided by the Department are
available, up to date, and responsive to reports of problems af dystonia, and that
timely aggregate data concerning such reports shall be made available to the

public upon request and consistent with existing confidentiality standards

SECTION 10. Appropriation. ~ 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.

SECTION 11. Separability Clause. - If any provision or part thereof is held invalid or
unconstitutional, the remainder of the law or the provision not otherwise affected shall remain
valid and subsisting.

SECTION 12. Repealing Clause. — Any law, presidential decree or issuance,
executive order, letter of instruction, administrative order, rule, or regulation contrary to or
inconsistent with the provisions of this Act is hereby repealed, modified, or amended

accordingly.


I SECTION 13. Effectivity Clause. —This Act shall take effect fifteen (15) days after its

2 publication in at least two (2) newspapers of general circulation.

Approved,