T ” E E N T H  CONGRESS OF THE REPUBLIC ) 
OF THEPHILIPPINES 
1 
First Regular Session 
) 
S E N A T E  
Introduced by Senator LnSA ‘ZOI” P. EJERGITO ESTRADA 
EXPLANATORY NOTE 
The Constitution, Article 13, 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 knded voluntary 
However, 
health agencies continue to research on possible treatment of dystonia. 
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 concern. 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. 
LUISA “‘LOI’b. EJERCITO ESTRADA 
Senator 
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THIRTEENTH CONGRESS OF THE REPUBLIC) 
OF THEPHTLIPPINES 
1 
First Regular Session 
1 
S E N A T E  
* _  
. :u, 
Introduced by Senator LUISA “LOI” P. EJERCITO ESTRADA 
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. Sh0t.t Title. - This Act shall be known as the “Dystonia Research and 
Information Act.” 
Section 2. DecZaration of PoZjcy. - 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 on dystonia. 
Section 3. DeJinition of Terms. - For purposes of this Act, the term: 
“Secretary” shall refer to the Secretary of the Department of Health; 
“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; 
“Committee” refers to the Committee on Dystonia Research. 
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Section 4. Dystonia Research. - The Secretary shall conduct or support research 
to expand the understanding of dystonia. Such research shall: 
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 dysknction, diminished intelligence 
and emotional imbalance; 
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. - 
(1) The Committee shall be composed of nine (9) members: 
(A) Two (2) representatives from the Department 
(€3) 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 
@)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. 
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Section 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 full 
Committee at each meeting concerning the activities conducted by such member. 
Section 8. Term of OfJice. 
- 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. 
Section 9. Fzmctiuns. - The Committee shall have the following functions: 
Advise the Secretary on appropriate research activities to be undertaken by 
the Office with respect to research on dystonia, its prevention and 
treatment; 
Report to the Secretary on such research; 
Provide recommendations to the Secretary regarding activities of the 
Committee; 
Prepare a report regarding the activities of the Committee; and 
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 available to the public upon 
request and consistent with existing confidentiality standards. 
Section 10. 
Apprupriutiuns. - To carry out the provisions of this Act, such 
amount as may be necessary is hereby authorized to be appropriated from the National 
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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. 
Separabilig 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 
RepeaZing 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. 
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, 
G YZ/greendisk/iiystonia 
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