Resblec oft the Phila 2
HOUSE OF REPRESENTATIVES

Quexow City

EIGHTEENTH CONGRESS
Second Regular Session

HOUSE BILL No. 8576

Introduced by HON. LUIS RAYMUND “LRAY” F. VILLAFUERTE, JR.

AN ACT
PROMOTING RESEARCH ON DYSTONIA

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 lystonia. 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 be
prevented and that effective treatment can be found.

A

LUIS RA’ IND “LRA’ . VILLAFUERTE, JR.


Rall o de lin

HOUSE OF REPRESENTATIVES.

QRucxon City

EIGHTEENTH CONGRESS
Second Regular Session

HOUSE BILL NoO,8576

Introduced by HON. LUIS RAYMUND “LRAY” F. VILLAFUERTE, 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 te

(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; 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 the Secretary in r
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;

(B) 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.

The Secretary shall act as chair of the Committee. He shall convene meetings of the
Committee, not less than twice a 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
conceming the activities conducted by such member.

SECTION 8. Term. — 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 vacaney 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 activities of the 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 of dystonia, and that timely aggregate
data conceming 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 hereof 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, or rule or regulation contrary to or
inconsistent with the provisions of this Act is hereby repealed, modified, or amended
accordingly.

SECTION 13. Effectivity Clause. — This Act shall take effect fifteen (15) days after its
publication in at least two (2) newspapers of general circulation.

Approved,