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SEVENTEENTH CONGRESS __)
REPUBLIC OF THE PHLIPPIES
Second Regular Session
HOUSE OF REPRESENTATIVES
Introduced by Representative Maximo B. Rodriguez, Jr.
House Bill No.68 17

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.”

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.

‘The fact that it has afflicted hundreds of Filipinos, and that the neurological disorder
is genetic, is a cause of concem. 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.

We

MAXIMO B. RODRIGUEZ, JR.


‘SEVENTEENTH CONGRESS )
REPUBLIC OF THE PHILIPPINES )
Second Regular Session )

HOUSE OF REPRESENTATIVES

Introduced by Representative Maximo B. Rodriguez, Jr.

House Bill No. 68.17

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 Title - This Act shall be known as the “Dystonia Research and
Information Act.”

SEC 2. Declaration of Policy - 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. Definition 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. 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, 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. 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

‘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


(0) Two (2) immediate relatives of dystonia patients to be appointed by the
ry.

(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. Meetings. - 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 conceming 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. Functions - 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;
(B) 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 conceming 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. Appropriations - 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. Separability Clause - If 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. Repealing Clause — 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. Effectivity Clause - This Act shall take effect fifteen (15) days after its publication
in at least two (2) newspapers of general circulation.

Approved,