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Republic of the Philippines
HOUSE OF REPRESENTATIVES
Quezon City

EIGHTEENTH CONGRESS
First Regular Session

HOUSE BILL NO. 3686

Introduced by: “KUYA” JOSE ANTONIO R. SY-ALVARADO

AN ACT
PROMOTING RESEARCH ON DYSTONIA

EXPLANATORY NOTE

Art, 13 Sec. 12 of the Constitution provides that the State shall establish and maintain an
effective food and drug regulatory system and undertake appropriate health, manpower
development and research which is responsive to the country’s health needs and problems.

Dystonia is a neurological movement disorder in, which a person’s muscle contract
uncontrollably. The contraction causes the affected body part to twist involuntarily, resulting in
fepetitive movements or abnormal postures. In other countries, privately owned health agencies
provide a research program in order to find cure or at least a temporary relief for this ailment.

+ There are numerous cases of Filipinos who are afflicted with this kind of disease and yet the

Government’s program for this ailment is minimal or even close to none. 2

This bill seeks to provide research program for dystonia in order to provide éure, relief or
even prevention for this disease. Nn

y

Hence, this proposal is submitted for consideration.

“KUYA” JOSE ANTONIO R. SY-ALVARADORC
Representative
(First District of Bulacan



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Republic of the Philippines
HOUSE OF REPRESENTATIVES
Quezon City

EIGHTEENTH CONGRESS
4 First Regular Session

HOUSE BILL NO. 3686

Introduced by: *KUYA” JOSE ANTONIO R, SY-ALVARADO

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." ) ERR

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;

i Thy! EUV AS TOS ANTON VAR
(b)*Dystonia" shall-refer to the neurological 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,

.{b) Involye families of persons who suffer from, dystonia, focus on atypical disease
presentation, neurological dysfunction, diminished intelligence and emotional
imbalance;

(¢),Eyaluate 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 a committee. established, 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
‘ommittee 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.

i SEC 8. Term of Office. Members shall be appointed by the Secretary for a term of three
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 remoyed for cause in accordance with procedures
eaviite by the Committee.

Beat, | SECS, Functions - The Cormmitee| shall have the following functions:

(A) Advise the Secretary on appropriate research activities to be undertaken by the Office with
: i ~ Fespect to research on dystonia, its prevention and treatment; ; f

Bee omni nitges: iyi Wyss aban yries dauli year, anid compule lifirmatign luk | eat
| (B)Reportto the Segretary on such research,

(C) Provide recommendations to the Secretary regarding activities of the Committee;

if (D) Prepare a report tezarding the activities Of the Commiitee, and pone tt

(unchictel by siibh saeint

(B) 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
1 aes! ti the BNPlip upon request and consistent with existing confidentiality standards.

anh 7 sec 10, Draccanatans iTa.carry.out.the provisions of this, Act, such amount es 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.

f | SEC IL Separability Clause, + It any provision or part hereof is held invalid or
| Unconstitutional, the ase Of the law or the pete ‘not, otherwise affected shall remain
valid and subsisting,

Py Y SEC, ‘Repealing Clause ~ Any law, presidential decree or issuance, executive order,
letter of i instruction, administrative order, rule or regulation contrary to or inconsistent with the
Provision of this Act.is,hereby repealed, modified or amended accordingly.

1. SEC 13. Eoreetivio' Ch

+ Mat least two (2) newspay

{This Act'shall take effect fifteen (15) days after its publication

of general circulation.

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