SIXTEENTH CONGRESS OF THE REPUBLIC 
OF THE PHILIPPINES 
Second Regular Session 
SENATE 
) 
) 
) 
S.No. 
2592 
Introduced by Senator Miriam Defensor Santiago 
AN ACT 
TO ESTABLISH A NATIONAL ACQUIRED BONE MARROW FAILURE DISFASE 
REGISTRY ON ACQUIRED BONE MARROW FAILURE DISEASES 
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 failure diseases can prolong and improve the quality of patients' lives, there 
is no single cure for these diseases. 
In the United States, the National Marrow Donor Program Registry has 
supposedly made significant contributions to the fight against bone marrow failure 
diseases by connecting millions of potential marrow donors with individuals and families 
suffering from these conditions. 
Thus, this bill directs the Secretary of the Department of Health to establish a 
National Acquired Bone Marrow Failure Disease Registry on acquired bone marrow 
failure diseases. I 
d~~ 4tv.""","" 4~ 
MIRIAM DEFENSOR SANTIi"GO 
11' 
I This bill was originally filed by Rep. Doris Matsui in the U.S. House of Representatives during the 112'h 
Congress, I st Session. 
1 


;, 
SIXTEENTH CONGRESS OF THE REPUBLIC 
OF THE PHILIPPINES 
) 
) 
) 
,,' 1 0>1\1" 
"I If:' .""lld·l"Q 
Second Regular Session 
.JlIN 
SENATE 
S. No. 
2592 
Introduced by Senator Miriam Defensor Santiago 
Be it enacted by the Senate and House of Representatives of the Philippines in 
Congress assembled: 
AN ACT 
2 
TO ESTABLISH A NATIONAL ACQUIRED BONE MARROW FAILURE DISEASE 
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REGISTRY ON ACQUIRED BONE MARROW FAILURE DISEASES 
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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 
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bone marrow failure disease" means: 
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(1) myeJodyspJastic syndromes (MDS); 
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(2) aplastic anemia; 
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(3) paroxysmal nocturnal hemoglobinuria (PNH); 
II 
(4) pure red cell aplasia; 
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(5) acute myeloid leukemia that progressed from myelodyspJastic syndromes; or 
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(6) large granular lymphocytic leukemia. 
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SECTION 3. National Acquired Bone Marrow Failure Disease Regist/y.-
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(a) Establishment of Registry-
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(I) In General. - Not later than 6 months after the date of effectivity of this 
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Act, the Secretary of the Department of Health (here called the "Secretary") shall: 
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(A) develop a system to collect data on acquired bone marrow 
2 
failure diseases; and 
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(B) establish and maintain a national and publicly available registry, 
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to be known as the National Acquired Bone Marrow Failure Disease 
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Registry, in accordance with paragraph (3). 
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(2) Recommendations of Advisory Committee. - In carrying out this Act, 
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the Secretary shall take into consideration the recommendations of the Advisory 
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Committee on Acquired Bone Marrow Failure Diseases. 
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(3) Purposes of Registry. - The National Acquired Bone Marrow Failure 
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Disease Registry shall: 
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(A) identify the incidence and prevalence of acquired bone marrow 
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failure diseases in the Philippines; 
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(B) be used to collect and store data on acquired bone marrow 
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failure diseases, including data concerning: 
IS 
(i) the age, race or ethnicity, general geographic location, sex, 
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and family history of individuals who are diagnosed with acquired 
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bone marrow failure diseases, and any other characteristics of such 
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individuals determined appropriate by the Secretary; 
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(ii) the genetic and environmental factors that may be 
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associated with developing acquired bone marrow failure diseases; 
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(iii) treatment approaches for dealing with acquired bone 
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marrow failure diseases; 
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(iv) outcomes for individuals treated for acquired bone 
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marrow failure diseases; and 
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(v) any other factors pertaining to acquired bone marrow 
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failure diseases determined appropriate by the Secretary; and 
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(C) be made available: 
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(i) to the general public; and 
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(ii) to researchers to facilitate further research into the causes 
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of, and treatments for, acquired bone marrow failure diseases in 
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accordance with standard practices of the Centers for Disease 
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Control and Preventions. 
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(b) Advisory Committee. -
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(I) Establishment. - Not later than 6 months after the date of effectivity of 
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this Act, the Secretary, shall establish an advisory committee, to be known as the 
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Advisory Committee on Acquired Bone Marrow Failure Diseases. 
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(2) Members. - The members of the Advisory Committee on Acquired 
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Bone Marrow Failure Diseases shall be appointed by the Secretary, and shall 
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include at least one representative from each of the following: 
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(A) A national patient advocacy organization with experience 
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advocating on behalf of patients suffering from acquired bone marrow 
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failure diseases. 
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(B) The centers for Disease Control and Prevention. 
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(C) Clinicians with experience in diagnosing or treating acquired 
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bone marrow failure diseases; and medical data registries. 
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(D) Epidemiologists who have experience with data registries. 
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(E) Publicly or privately funded researchers who have experience 
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researching acquired bone marrow failure diseases. 
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(3) Responsibilities. - The Advisory Committee on Acquired Bone Marrow 
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Failure Diseases shall provide recommendations to the Secretary on the 
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establishment and maintenance of the National Acquired Bone Marrow Failure 
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Disease Registry, including recommendations on the collection, maintenance, and 
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dissemination of data. 
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(4) Public Availability. - The Secretary shall make the recommendations of 
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the Advisory Committee on Acquired Bone Marrow Failure Disease publicly 
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available. 
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.(c) Grants. - The Secretary may award grants to, and enter into contracts and 
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cooperative agreements with, public or private nonprofit entities for the management of, 
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as well as the collection, analysis, and reporting of data to be included in, the National 
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Acquired Bone Marrow Failure Disease Registry. 
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SECTION 4. Authorization of Appropriations. - To carry out the provisions of this 
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Act, there are authorized to be appropriated such sums as may be necessary for each 
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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 
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effect. 
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SECTION 6. Repealing Clause. - All laws, decrees, orders, rules and regulations, 
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or 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 
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publication in at least two (2) newspapers of general circulation. 
Approved, 
/fldp 14jan20 15 
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