FIFTEENTH CONGRESS )
REPUBLIC OF THE PHILIPPINES —)
FIRST REGULAR SESSION )

HOUSE OF REPRESENTATIVES

Introduced by Representative Rufus B. Rodriguez and
Representative Maximo B. Rodriguez, Jr.

House Bill No._ 2289

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 concer. 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.
mw, RODRIGUEZ

Me:

MAXIMO B. RODRIGUEZ, JR.


FOURTEENTH CONGRESS OF THE )
REPUBLIC OF THE PHILIPPINES —)
First Regular Session )

HOUSE OF REPRESENTATIVES

House Bill No. 2289

Introduced by Representative Rufus B. Rodriguez

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,

(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.

(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 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 Commitee 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 shail 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 concerning dystonia are available, up to date,
and responsive to reports of problems with dystonia, and that timely aggregate
data conceming 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,