FIFTEENTH CONGRESS OF THE REPUBLIC 
OF THE PHILIPPINES 
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Second Regular Session 
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SEtI.AlJ;. 
S. No. ;J'll14 
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Introduced by Senator Miriam Defensor Santiago 
EXPLANATORY NOTE 
The Constitution, Article 2, Section 15 provides: "The State shall protect and promote the 
right to health of the people and instill health consciousness among them. 
Acquired bone marrow failure diseases reportedly have a debilitating and often fatal 
impact on those diagnosed with these diseases. While some treatments for acquired bone marrow 
failme diseases can prolong and improve the quality of patients' lives, there is no single cme for 
these diseases. 
In the United States, the National Marrow Donor Program Registry has made significant 
contributions to the fight against bone marrow failme diseases by connecting millions of 
potential marrow donors with individuals and families suffering from these conditions. 
Thus, this bills directs the Secretary of Health to establish a National Acquired Bone 
Marrow Failure Disease Registry on acquired bone marrow failure diseases. 
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FIFTEENTH CONGRESS OF THE REPUBLIC 
) 
OF THE PHILIPPINES 
) 
Second Regular Session 
) 
"1 / 
~1r1R -':) [' 3 :30 
'"V.W 
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.J 
Introduced by Senator Miriam Defensor Santiago 
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AN ACT 
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ESTABLISHING A NATIONAL ACQUIRED BONE MARROW FAILURE DISEASE 
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REGISTRY ON ACQUIRED BONE MARROW FAILURE DISEASES 
Be it enacted by the Senate and House of Representatives of the Philippines in Congress 
assembled: 
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SECTION I. Short Title. - This Act shall be known as the "Bone Marrow Failure 
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Disease Research Act." 
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SECTION 2. Definition of Terms. - For purposes of this Act, the term "acquired bone 
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marrow failure disease" means: 
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(A) 
myelodysplastic syndromes (MDS); 
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(8) 
aplastic anemia; 
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(C) 
paroxysmal nocturnal hemoglobinuria (PNE); 
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(D) 
pure red cell aplasia; 
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(E) 
acute myeloid leukemia that progressed from myelodysplastic syndromes; or 
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(F) 
laTge granular lymphocytic leukemia. 
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SECTION 3. National Acquired Bone Marrow Failure Disease Registry.-
IS 
(A) 
Establishment of Registry-
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(I) 
In General. - Not later than six (6) months after the date of effectivity of 
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this Act, the Secretary of Health (here called the "Secretary") shall: 
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(i) 
develop a system to collect data on acquired bonc marrow failure 
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diseases; and 
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(ii) 
establish and maintain a national alld publicly available registry, to 
be known as the National Acquired Bone Marrow Failure Disease Registry, in 
accordance with paragraph (C). 
(2) 
Recommendations of Advisory Committee. - In carrying out this Act, the 
Secretary shall take into consideration the recommendations of the Advisory Committee 
on Acquired Bone Marrow Failure Diseases. 
(3) 
Purposes of Registry. - The National Acquired Bone Marrow Failure 
Disease Registry shall: 
(i) 
identify the incidence and prevalence of acquired bone marrow 
failure diseases in the Philippines; 
(ii) 
be used to collect and store data on acquired bone marrow failure 
diseases, including data concerning: 
(a) 
the age, race or ethnicity, general geographic location, sex, 
and family history of individuals who are diagnosed with acquired bone 
marrow failure diseases, and ally other characteristics of such individuals 
determined appropriate by the Secretary; 
(b) 
the genetic and environmental factors thai may be 
associated with developing acquired bone marrow failure diseases; 
(c) 
treatment approaches for dealing with acquired bone 
marrow failure diseases; 
(d) 
outcomes for individuals treated for acquired bone marrow 
failure diseases; and 
(e) 
any other factors pertaining to acquired bone marrow 
failure diseases determined appropriate by the Secretary; and 
(iii) 
be made available: 
(a) 
to the general public; and 
(b) 
to researchers to facilitate further reseal'ch into the causes 
of, and treatments for, acquired bone marrow failure diseases in 
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accordance with standard practices of the Centers for Disease Control and 
Preventions. 
(B) Advisory Committee. -
(1) 
Establishment. - Not later than six (6) months after the date of effectivity 
of this Act, the Secretary shall establish an advisory committee to be known as the 
Advisory Committee on Acquired Bone Marrow Failure Diseases. 
(2) 
Members. - The members of the Advisory Committee on Acquired Bone 
Marrow Failure Diseases shall be appointed by the Secretary, and shall include at least 
one representative from each of the following: 
(i) 
A national patient advocacy organization with expenence 
advocating on behalf of patients suffering from acquired bone marrow failure 
diseases. 
(ii) 
The centers for Disease Control and Prevention. 
(iii) 
Clinicians with experience in diagnosing or treating acquired bone 
marrow failure diseases; llild medical data registries. 
(iv) 
(v) 
Epidemiologists who have experience with data registries. 
Publicly or privately funded researchers who have experience 
researching acquired bone marrow failure diseases. 
(3) 
Responsibilities. - The Advisory Committee on Acquired Bone Marrow 
Failure Diseases shall provide recommendations to the Secretary on the establishment 
and maintenance of the National Acquired Bone Marrow Failure Disease Registry, 
including recommendations on the collection, maintenance, and dissemination of data. 
(4) 
Public Availability. - The Secretary shall make the recommendations of 
the Advisory Committee on Acquired Bone Marrow Failure Disease publicly available. 
(c) 
Grants. -
The Secretary may award grants to, and enter into contracts and 
cooperative agreements with, public or private nonprofit entities for the management of, as well 
as the collection, analysis, lli1d reporting of data to be included in, the National Acquired Bone 
Marrow Failure Disease Registry. 
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SECTION 4. Authorization of Appropriations. - To carry out the provisions of this Act, 
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there are authorized to be appropriated such sums as may be necessary for each fiscal year. 
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SECTION 5. Separability Clause. - If any provIsIOn of this Act shall be declared 
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unconstitutional, any other provision not affected thereby shall remain in full force and effect. 
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SECTION 6. Repealing Clause. - All laws, decrees, orders, rules and regulations, or 
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parts thereof inconsistent with this Act are hereby repealed or amended accordingly. 
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SECTION 7. Effectivity. - This Act shall take effect fifteen (15) days after its publication 
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in at least two (2) newspapers of general circulation. 
Approved, 
/tldp 1111arc1120 12 
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