text: SECTION 1. SHORT TITLE.
  
      This Act may be cited as the ``Hereditary Hemorrhagic 
  Telangiectasia Diagnosis and Treatment Act of 2011''.
  
  SEC. 2. FINDINGS.
  
      The Congress finds as follows:
              (1) Hereditary hemorrhagic telangiectasia (``HHT'') is a 
          largely undiagnosed or misdiagnosed vascular genetic bleeding 
          disorder that causes abnormalities of the blood vessels. A 
          person with HHT has the tendency to form blood vessels that 
          lack the capillaries between an artery and vein. HHT can cause 
          spontaneous hemorrhage or stroke when brain or lung 
          arteriovenous malformations, which are tangled blood vessels, 
          rupture unexpectedly in all age groups. In addition to 
          hemorrhagic stroke, embolic stroke, and brain abscess occur in 
          approximately 30 percent of individuals with HHT caused by 
          artery-vein malformations in the lung (due to lack of 
          capillaries between the arterial and venous systems which 
          prevent or normally filter out clots and bacteria), causing 
          disability and sudden premature death.
              (2) One in 5,000 American children and adults suffer from 
          HHT.
              (3) Studies have found an increase in morbidity and 
          mortality rate for individuals who suffer from HHT.
              (4) Due to the widespread lack of knowledge, accurate 
          diagnosis, and appropriate intervention, 90 percent of HHT-
          affected families are at risk for preventable life-threatening 
          and disabling medical incidents such as stroke.
              (5) Early detection, screening, and treatment can prevent 
          premature deaths, spontaneous hemorrhage, hemorrhagic stroke, 
          embolic stroke, brain abscess, and other long-term health care 
          complications resulting from HHT.
              (6) HHT is an important health condition with serious 
          health consequences which are amenable to early identification 
          and diagnosis with suitable tests, and acceptable and available 
          treatments in established treatment centers.
              (7) Timely identification and management of HHT cases is an 
          important public health objective because it will save lives, 
          prevent disability, and reduce direct and indirect health care 
          costs expenditures.
              (8) Without a new program for early detection, screening, 
          and treatment, 14,000 children and adults who suffer from HHT 
          in the population today will suffer premature death and 
          disability.
  
  SEC. 3. PURPOSE.
  
      The purpose of this Act is to create a federally led and financed 
  initiative for early diagnosis and appropriate treatment of hereditary 
  hemorrhagic telangiectasia that will result in the reduction of the 
  suffering of families, prevent premature death and disability, and 
  lower health care costs through proven treatment interventions.
  
  SEC. 4. NATIONAL INSTITUTES OF HEALTH.
  
      Part B of title IV of the Public Health Service Act (42 U.S.C. 284 
  et seq.) is amended by adding at the end the following:
  
  ``SEC. 409K. HEREDITARY HEMORRHAGIC TELANGIECTASIA.
  
      ``(a) HHT Initiative.--
              ``(1) Establishment.--The Secretary shall establish and 
          implement an HHT initiative to assist in coordinating 
          activities to improve early detection, screening, and treatment 
          of people who suffer from HHT. Such initiative shall focus on--
                      ``(A) advancing research on the causes, diagnosis, 
                  and treatment of HHT, including through the conduct or 
                  support of such research; and
                      ``(B) increasing physician and public awareness of 
                  HHT.
              ``(2) Consultation.--In carrying out this subsection, the 
          Secretary shall consult with the Director of the National 
          Institutes of Health and the Director of the Centers for 
          Disease Control and Prevention.
      ``(b) HHT Coordinating Committee.--
              ``(1) Establishment.--Not later than 60 days after the date 
          of the enactment of this section, the Secretary, in 
          consultation with the Director of the National Institutes of 
          Health, shall establish a committee to be known as the HHT 
          Coordinating Committee.
              ``(2) Membership.--
                      ``(A) In general.--The members of the Committee 
                  shall be appointed by the Secretary, in consultation 
                  with the Director of the National Institutes of Health, 
                  and shall consist of 12 individuals who are experts in 
                  HHT or arteriovenous malformation (AVM) as follows:
                              ``(i) Four representatives of HHT Treatment 
                          Centers of Excellence designated under section 
                          317U(c)(1).
                              ``(ii) Four experts in vascular, molecular, 
                          or basic science.
                              ``(iii) Four representatives of the 
                          National Institutes of Health.
                      ``(B) Chair.--The Secretary shall designate the 
                  Chair of the Committee from among its members.
                      ``(C) Interim members.--In place of the 4 members 
                  otherwise required to be appointed under paragraph 
                  (2)(A)(i), the Secretary may appoint 4 experts in 
                  vascular, molecular, or basic science to serve as 
                  members of the Committee during the period preceding 
                  designation and establishment of HHT Treatment Centers 
                  of Excellence under section 317U.
                      ``(D) Publication of names.--Not later than 30 days 
                  after the establishment of the Committee, the Secretary 
                  shall publish the names of the Chair and members of the 
                  Committee on the Website of the Department of Health 
                  and Human Services.
                      ``(E) Terms.--The members of the Committee shall 
                  each be appointed for a 3-year term and, at the end of 
                  each such term, may be reappointed.
                      ``(F) Vacancies.--A vacancy on the Committee shall 
                  be filled by the Secretary in the same manner in which 
                  the original appointment was made.
              ``(3) Responsibilities.--The Committee shall develop and 
          coordinate implementation of a plan to advance research and 
          understanding of HHT by--
                      ``(A) conducting or supporting basic, 
                  translational, and clinical research on HHT across the 
                  relevant national research institutes, national 
                  centers, and offices of the National Institutes of 
                  Health, including the National Heart, Lung, and Blood 
                  Institute; the National Institute of Neurological 
                  Disorders and Stroke; the National Institutes of 
                  Diabetes and Digestive and Kidney Diseases; the Eunice 
                  Kennedy Shriver National Institute of Child Health and 
                  Human Development; the National Cancer Institute; and 
                  the Office of Rare Diseases; and
                      ``(B) conducting evaluations and making 
                  recommendations to the Secretary, the Director of the 
                  National Institutes of Health, and the Director of the 
                  National Cancer Institute regarding the prioritization 
                  and award of National Institutes of Health research 
                  grants relating to HHT, including with respect to 
                  grants for--
                              ``(i) expand understanding of HHT through 
                          basic, translational, and clinical research on 
                          the cause, diagnosis, prevention, control, and 
                          treatment of HHT;
                              ``(ii) training programs on HHT for 
                          scientists and health professionals; and
                              ``(iii) HHT genetic testing research to 
                          improve the accuracy of genetic testing.
      ``(c) Definitions.--In this section:
              ``(1) The term `Committee' means the HHT Coordinating 
          Committee established under subsection (b).
              ``(2) The term `HHT' means hereditary hemorrhagic 
          telangiectasia.''.
  
  SEC. 5. CENTERS FOR DISEASE CONTROL AND PREVENTION.
  
      Part B of title III of the Public Health Service Act is amended by 
  inserting after section 317T (42 U.S.C. 247b-22) the following:
  
  ``SEC. 317U. HEREDITARY HEMORRHAGIC TELANGIECTASIA.
  
      ``(a) In General.--With respect to hereditary hemorrhagic 
  telangiectasia (in this section referred to as `HHT'), the Director of 
  the Centers for Disease Control and Prevention (in this section 
  referred to as the `Director') shall carry out the following 
  activities:
              ``(1) The conduct of population screening described in 
          subsection (c).
              ``(2) The identification and conduct of investigations to 
          further develop and support guidelines for diagnosis of, and 
          intervention for, HHT, including cost-benefit studies.
              ``(3) The development of a standardized survey and 
          screening tool on family history.
              ``(4) The establishment, in collaboration with a voluntary 
          health organization representing HHT families, of an HHT 
          resource center within the Centers for Disease Control and 
          Prevention to provide comprehensive education on, and 
          disseminate information about, HHT to health professionals, 
          patients, industry, and the public.
              ``(5) The conduct or support of public awareness programs 
          in collaboration with medical, genetic, and professional 
          organizations to improve the education of health professionals 
          about HHT.
      ``(b) Collaborative Approaches.--The Director shall carry out this 
  section through collaborative approaches within the National Center on 
  Birth Defects and Developmental Disabilities and the Division for Heart 
  Disease and Stroke Prevention of the Centers for Disease Control and 
  Prevention.
      ``(c) Population Screening.--In carrying out population screening 
  under subsection (a)(1), the Director shall--
              ``(1) designate and provide funding for a sufficient number 
          of HHT Treatment Centers of Excellence to improve patient 
          access to information, treatment, and care by HHT experts;
              ``(2) conduct surveillance through a regional population 
          study, supplemented by sentinel health care provider or center 
          surveillance, and administrative database analyses as useful to 
          accurately identify--
                      ``(A) the prevalence of HHT; and
                      ``(B) the prevalence of hemorrhagic and embolic 
                  stroke and brain abscess, resulting from HHT;
              ``(3) include HHT screening questions in the Behavioral 
          Risk Factor Surveillance System survey conducted by the Centers 
          for Disease Control and Prevention in order to screen a broader 
          population and more accurately determine the prevalence of HHT;
              ``(4) disseminate data collected under paragraph (2)(B) to 
          the Paul Coverdell National Acute Stroke Registry, to be 
          utilized for analyses of natural history of hemorrhagic and 
          embolic stroke in HHT, and to develop screening and artery-vein 
          malformation treatment guidelines specific to prevention of 
          complications from HHT;
              ``(5) develop and implement programs, targeted for 
          physicians and health care professional groups likely to be 
          accessed by families with HHT, to increase HHT diagnosis and 
          treatment rates through the--
                      ``(A) establishment of a partnership with HHT 
                  Treatment Centers of Excellence designated under 
                  paragraph (1) through the creation of an international 
                  database of patients assessed at such HHT Treatment 
                  Centers of Excellence (including with respect to 
                  phenotype information, genotype information, 
                  transfusion dependence, and radiological findings);
                      ``(B) integration of such database with the 
                  universal data collection system used by the Centers 
                  for monitoring hemophilia with the blood disorders and 
                  the Paul Coverdell National Acute Stroke Registry; and
                      ``(C) inclusion of other medical providers who 
                  treat HHT patients; and
              ``(6) use existing administrative databases on non-HHT 
          Treatment Center of Excellence patients to learn about the 
          natural history of HHT, the efficacy of various treatment 
          modalities, and to better inform and develop screening and 
          treatment guidelines associated with improvement in health care 
          outcomes, and research priorities relevant to HHT.
      ``(d) Eligibility for Designation as HHT Treatment Center of 
  Excellence.--In carrying out subsection (c)(1), the Director may 
  designate as an HHT Treatment Center of Excellence only academic health 
  centers demonstrating each of the following:
              ``(1) The academic health center possesses a team of 
          medical experts capable of providing comprehensive evaluation, 
          treatment, and education to individuals with known or suspected 
          HHT and their health care providers.
              ``(2) The academic health center has sufficient personnel 
          with knowledge about HHT, or formal collaboration with 
          partnering organizations for personnel or resources, to be able 
          to--
                      ``(A) respond in a coordinated, multidisciplinary 
                  way to patient inquiries; and
                      ``(B) coordinate evaluation, treatment, and 
                  education of patients and their families in a timely 
                  manner.
              ``(3) The academic health center has the following 
          personnel, facilities, and patient volume:
                      ``(A) A medical director with--
                              ``(i) specialized knowledge of the main 
                          organ manifestations of HHT; and
                              ``(ii) the ability to coordinate the 
                          multidisciplinary diagnosis and treatment of 
                          patients referred to the center.
                      ``(B) Administrative staff with--
                              ``(i) sufficient knowledge to respond to 
                          patient inquiries and coordinate patient care 
                          in a timely fashion; and
                              ``(ii) adequate financial support to allow 
                          the staff to commit at least 25 to 50 percent 
                          of their time on the job to HHT.
                      ``(C) An otolaryngologist with experience and 
                  expertise in the treatment of recurrent epistaxis in 
                  HHT patients.
                      ``(D) An interventional radiologist with experience 
                  and expertise in the treatment of pulmonary 
                  arteriovenous malformations (AVM).
                      ``(E) A genetic counselor or geneticist with the 
                  expertise to provide HHT-specific genetic counseling to 
                  patients and families.
                      ``(F) On-site facilities to screen for all major 
                  organ manifestations of HHT.
                      ``(G) A patient volume of at least 25 new HHT 
                  patients per year.
                      ``(H) Established mechanisms to coordinate 
                  surveillance and outreach with HHT patient advocacy 
                  organizations.''.
  
  SEC. 6. ADDITIONAL HEALTH AND HUMAN SERVICES ACTIVITIES.
  
      With respect to hereditary hemorrhagic telangiectasia (in this sec 
  referred to as ``HHT''), the Secretary of Health and Human Services, 
  acting through the Administrator of the Centers for Medicare & Medicaid 
  Services, shall award grants on a competitive basis--
              (1) for an analysis by grantees of the Medicare Provider 
          Analysis and Review (MEDPAR) file to develop preliminary 
          estimates on the total costs to the Medicare program under 
          title XVIII of the Social Security Act for items, services, and 
          treatments for HHT furnished to individuals with HHT who are 
          entitled to benefits under part A of title XVIII of the Social 
          Security Act or enrolled under part B of such title; and
              (2) to make recommendations regarding an enhanced data 
          collection protocol to permit a more precise determination of 
          the total costs described in paragraph (1).
  
  SEC. 7. AUTHORIZATION OF APPROPRIATIONS.
  
      (a) In General.--To carry out section 409K of the Public Health 
  Service Act as added by section 4 of this Act, section 317U of the 
  Public Health Service Act as added by section 5 of this Act, and 
  section 6 of this Act, there is authorized to be appropriated 
  $5,000,000 for each of fiscal years 2012 through 2016.
      (b) Resource Center.--Of the amount authorized to be appropriated 
  under subsection (a) for each of fiscal years 2012 through 2016, 
  $1,000,000 shall be for carrying out section 317U(a)(4) of the Public 
  Health Service Act, as added by section 5 of this Act.
target: Hereditary Hemorrhagic Telangiectasia Diagnosis and Treatment Act of 2011 - Amends the Public Health Service Act to require the Secretary of Health and Human Services (HHS) to establish and implement a hereditary hemorrhagic telangiectasia (HHT, a vascular genetic bleeding disorder that causes abnormalities of the blood vessels) initiative to assist in coordinating activities to improve early detection, screening, and treatment of people who suffer from HHT, focusing on advancing research on the causes, diagnosis, and treatment of HHT and increasing physician and public awareness of HHT.
  
  Directs the Secretary to establish the HHT Coordinating Committee to develop and coordinate implementation of a plan to advance research and understanding of HHT, including by: (1) conducting or supporting research across relevant National Institutes of Health (NIH) institutes, and (2) conducting evaluations and making recommendations regarding the prioritization and award of NIH research grants relating to HHT.
  
  Requires the Director of the Centers for Disease Control and Prevention (CDC) to carry out activities with respect to HHT, including conducting population screening and establishing an HHT resource center to provide comprehensive education on, and disseminate information about, HHT to health professionals, patients, industry, and the public. Sets forth requirements for HHT population screening, including requiring the Director of CDC to designate and provide funding for HHT Treatment Centers of Excellence.
  
  Requires the Administrator of the Centers for Medicare & Medicaid Services (CMS) to award grants for: (1) an analysis of the Medicare Provider Analysis and Review (MEDPAR) file to develop preliminary estimates on the totals costs to Medicare for items, services, and treatments for HHT; and (2) recommendations regarding an enhanced data collection protocol to permit a more precise determination of such costs.
feat_title: A bill to amend the Public Health Service Act to improve the diagnosis and treatment of hereditary hemorrhagic telangiectasia, and for other purposes.