[Congressional Record Volume 156, Number 132 (Tuesday, September 28, 2010)]
[House]
[Pages H7193-H7194]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
ACQUIRED BONE MARROW FAILURE DISEASE RESEARCH AND TREATMENT ACT OF 2010
Mr. PALLONE. Mr. Speaker, I move to suspend the rules and pass the
bill (H.R. 1230) to amend the Public Health Service Act to provide for
the establishment of a National Acquired Bone Marrow Failure Disease
Registry, to authorize research on acquired bone marrow failure
diseases, and for other purposes, as amended.
The Clerk read the title of the bill.
The text of the bill is as follows:
H.R. 1230
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Acquired Bone Marrow Failure
Disease Research and Treatment Act of 2010''.
SEC. 2. ACQUIRED BONE MARROW FAILURE DISEASE RESEARCH.
Part B of title III of the Public Health Service Act (42
U.S.C. 243 et seq.) is amended by inserting after section
317T the following:
``SEC. 317U. ACQUIRED BONE MARROW FAILURE DISEASE RESEARCH.
``(a) In General.--The Secretary may conduct research on
acquired bone marrow failure diseases. Such research may
address factors including--
``(1) trends in the characteristics of individuals who are
diagnosed with acquired bone marrow failure diseases,
including age, race and ethnicity, general geographic
location, sex, family history, and any other characteristics
determined appropriate by the Secretary;
``(2) the genetic and environmental factors, including
exposure to toxins, that may be associated with developing
acquired bone marrow failure diseases;
``(3) approaches to treating acquired bone marrow failure
diseases;
``(4) outcomes for individuals treated for acquired bone
marrow failure diseases, including outcomes for recipients of
stem cell therapeutic products; and
``(5) any other factors pertaining to acquired bone marrow
failure diseases determined appropriate by the Secretary.
``(b) Collaboration With the Radiation Injury Treatment
Network.--In carrying out subsection (a), the Secretary may
collaborate with the Radiation Injury Treatment Network of
the C.W. Bill Young Cell Transplantation Program established
pursuant to section 379 to--
``(1) augment data for the studies under such subsection;
``(2) access technical assistance that may be provided by
the Radiation Injury Treatment Network; or
``(3) perform joint research projects.
``(c) Definition.--In this section, the term `acquired bone
marrow failure disease' means--
``(1) myelodysplastic syndromes (MDS);
``(2) aplastic anemia;
``(3) paroxysmal nocturnal hemoglobinuria (PNH);
``(4) pure red cell aplasia;
``(5) acute myeloid leukemia that has progressed from
myelodysplastic syndromes;
``(6) large granular lymphocytic leukemia; or
``(7) any other bone marrow failure disease specified by
the Secretary, to the extent such disease is acquired and not
inherited, as determined by the Secretary.''.
SEC. 3. MINORITY-FOCUSED PROGRAMS ON ACQUIRED BONE MARROW
FAILURE DISEASES.
Title XVII of the Public Health Service Act (42 U.S.C. 300u
et seq.) is amended by inserting after section 1707A the
following:
``SEC. 1707B. MINORITY-FOCUSED PROGRAMS ON ACQUIRED BONE
MARROW FAILURE DISEASES.
``(a) Information and Referral Services.--
``(1) In general.--The Secretary may establish and
coordinate outreach and informational programs targeted to
minority populations, including Hispanic, Asian-American,
Native Hawaiian, and Pacific Islander populations, that are
affected by acquired bone marrow failure diseases.
``(2) Program activities.--Programs under subsection (a)
may carry out activities that include--
``(A) making information about treatment options and
clinical trials for acquired bone marrow failure diseases
publicly available; and
``(B) providing referral services for treatment options and
clinical trials.
``(b) Definition.--In this section, the term `acquired bone
marrow failure disease' has the meaning given such term in
section 317U(c).''.
SEC. 4. BEST PRACTICES FOR DIAGNOSIS OF AND CARE FOR
INDIVIDUALS WITH ACQUIRED BONE MARROW FAILURE
DISEASES.
Part B of title III of the Public Health Service Act (42
U.S.C. 243 et seq.), as amended by section 2, is further
amended by inserting after section 317U the following:
``SEC. 317V. BEST PRACTICES FOR DIAGNOSIS OF AND CARE FOR
INDIVIDUALS WITH ACQUIRED BONE MARROW FAILURE
DISEASES.
``(a) Grants.--The Secretary, acting through the Director
of the Agency for Healthcare Research and Quality, may award
grants to researchers to study best practices with respect to
diagnosing acquired bone marrow failure diseases and
providing care to individuals with such diseases.
``(b) Definition.--In this section, the term `acquired bone
marrow failure disease' has the meaning given such term in
section 317U(c).''.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from New
Jersey (Mr. Pallone) and the gentleman from Texas (Mr. Burgess) each
will control 20 minutes.
The Chair recognizes the gentleman from New Jersey.
General Leave
Mr. PALLONE. Mr. Speaker, I ask unanimous consent that all Members
may have 5 legislative days in which to revise and extend their marks
and include extraneous material in the Record.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from New Jersey?
There was no objection.
Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
H.R. 1230, sponsored by the gentlewoman from California,
Representative Matsui, promotes research by HHS on acquired bone marrow
failure disease, including the study of trends and the characteristics
of individuals who are diagnosed with the disease, including age, race
and ethnicity, sex and family history.
Mr. Speaker, it is my understanding that our former colleague,
Representative Bob Matsui, actually passed away from this, and that is
why it is particularly important, not only to Congresswoman Matsui, but
to all of us.
So I urge my colleagues to support this legislation.
I reserve the balance of my time.
Mr. BURGESS. Mr. Speaker, I yield myself such time as I may consume.
H.R. 1230, the Bone Marrow Failure Disease Research and Treatment
Act, would allow the Secretary of Health and Human Services to conduct
research and outreach on acquired bone marrow failure diseases.
This bill would allow the Secretary of Health and Human Services to
conduct additional research on acquired bone marrow diseases to aid in
figuring out the causes of the disease and study how to better diagnose
and care for individuals suffering from bone marrow diseases. The bill
would also allow the Secretary to establish outreach programs that
would help minority populations, who appear to be disproportionately
affected by such acquired bone marrow diseases, in finding clinical
trials and other treatment options.
I am a cosponsor of the bill. I urge my colleagues to support it.
I yield back the balance of my time.
Mr. PALLONE. Mr. Speaker, I would also yield back the balance of my
time
[[Page H7194]]
and urge that the House pass this legislation.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from New Jersey (Mr. Pallone) that the House suspend the
rules and pass the bill, H.R. 1230, as amended.
The question was taken.
The SPEAKER pro tempore. In the opinion of the Chair, two-thirds
being in the affirmative, the ayes have it.
Mr. BURGESS. Mr. Speaker, I object to the vote on the ground that a
quorum is not present and make the point of order that a quorum is not
present.
The SPEAKER pro tempore. Pursuant to clause 8 of rule XX and the
Chair's prior announcement, further proceedings on this motion will be
postponed.
The point of no quorum is considered withdrawn.
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