[Congressional Record (Bound Edition), Volume 156 (2010), Part 12]
[House]
[Pages 16952-16953]
[From the U.S. 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).''.


[[Page 16953]]


  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.
  Ms. MATSUI. Mr. Speaker, I rise today in strong support of H.R. 1230, 
the Acquired Bone Marrow Failure Disease Research and Treatment Act.
  Every year, it is estimated that between 20,000 and 30,000 Americans 
are diagnosed with some form of acquired bone marrow failure disease.
  This classification of diseases, which include myelodysplastic 
syndromes (commonly known as MDS), aplastic anemia, paroxysmal 
nocturnal hemoglobinuria (known as PNH), and others, take a 
debilitating and deadly toll on those diagnosed, forcing patients and 
families to deal with significant health, social, and economic 
hardships.
  In some cases, MDS can even progress over time to become leukemia, 
which affects hundreds of thousands of Americans in its own right.
  And while individuals stricken with these conditions can take some 
action to prolong their lives, this diagnosis offers little hope that 
affected patients will ever fully recover.
  In light of this, I introduced the Acquired Bone Marrow Failure 
Disease Research and Treatment Act to enhance and intensify current and 
future efforts in the fight against bone marrow failure diseases.
  This legislation would support increased research on these still 
relatively unstudied diseases, including what genetic and environmental 
factors may be associated with the condition and best practices for the 
diagnosis and treatment of these diseases.
  In addition, the bill would authorize coordinated outreach and 
informational programs targeted to minority populations affected by 
these diseases, including information on treatment options and clinical 
trials research.
  These provisions are critical to the individuals affected by bone 
marrow failure diseases and their families, as it would bring both 
tangible progress to fighting these diseases, and provide hope to those 
who have suffered their effects.
  This bill has bipartisan support, 62 cosponsors, and has incorporated 
suggestions from both sides of the aisle.
  Mr. Speaker, I commend our Leadership and thank Chairman Waxman and 
Chairman Pallone and their staff for bringing H.R. 1230 to the floor, 
and for their commitment to protecting the health of all Americans.
  I urge my colleagues to support passage of this important 
legislation.
  Mr. PALLONE. Mr. Speaker, I would also yield back the balance of my 
time 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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