,i #aacth ,,congress #ast ,session ,h4 ,r4 #bjgc ,,in ,,the ,,house ,,of ,,representatives ,may #ba1 #bjac ,mr4 ,brady of ,texas 7for himself1 ,mrs4 ,capps1 ,mr4 ,king of ,new ,york1 ,ms4 ,norton1 ,mr4 ,roskam1 ,mr4 ,costa1 and ,mr4 ,bishop of ,new ,york7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,a ,,bill ,to direct the ,secretary of ,health and ,human ,services to establish an interagency coordinating committee on pulmonary hypertension to develop recommendations to advance research1 increase awareness and education1 and improve health and health care1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,pulmonary ,hypertension ,research and ,diagnosis ,act of #bjac4 #b4 ,findings ,the ,congress finds as follows3 7#a7 ,pulmonary hypertension is a serious1 debilitating1 and often fatal progressive condition where the blood pressure in the lungs rises to dangerously high levels4 ,in pulmonary hypertension patients1 the walls of the arteries that take blood from the right side of the heart to the lungs thicken and constrict4 ,as a result1 the right side of the heart has to pump harder to move blood into the lungs1 causing it to enlarge and ultimately fail4 7#b7 ,in advanced stages of pulmonary hypertension1 the patient is able to perform only minimal activity and has symptoms even when resting1 resulting in considerable disability4 ,the disease may worsen to the point where the patient is completely bedridden4 ,in a matter of months1 many pulmonary hypertension patients have become so functionally deteriorated that they have lost their jobs and are dependent on family and disability benefits4 7#c7 ,despite the importance of early diagnosis on prognosis1 pulmonary hypertension is rarely picked up in a routine medical exam4 ,even in its later stages1 the signs of the disease are frequently confused with more common conditions that affect the heart and lungs4 ,due to the fact that the average length of time between the onset of symptoms and an accurate diagnosis is presently #b4h years1 nearly three out of four patients have advanced pulmonary hypertension by the time they are accurately diagnosed4 7#d7 ,while pulmonary hypertension remains an incurable condition1 progress in our scientific understanding of the disease has led to the development and ,food and ,drug ,administration approval of nine innovative therapies indicated to treat pulmonary hypertension4 7#e7 ,existing treatment options can significantly extend life and improve quality of life for patients with pulmonary hypertension4 ,the effectiveness of pulmonary hypertension treatment options is directly tied to how early in the progression of the condition a patient can be accurately diagnosed and begin the correct regimen of therapies4 ,improved early intervention will improve health outcomes for pulmonary hypertension patients while reducing the necessity for more drastic and costly treatment options1 such as a lung or heart-lung transplant4 #c4 ,interagency pulmonary hypertension coordinating committee 7a7 ,establishment ,the ,secretary of ,health and ,human ,services 7in this ,act referred to as the ,secretary7 shall establish a committee1 to be known as the ,interagency ,pulmonary ,hypertension ,coordinating ,committee 7in this ,act referred to as the ,committee71 to make recommendations on1 and coordinate1 all efforts within the ,department of ,health and ,human ,services concerning pulmonary hypertension4 7b7 ,responsibilities ,in carrying out its duties under this section1 the ,committee shall-- 7#a7 develop and annually update a summary of pulmonary hypertension advances in medical research and treatment development and improvement1 early and accurate diagnosis1 appropriate and timely intervention1 transplantation1 and access to care and therapies for patients2 7#b7 monitor ,federal activities with respect to pulmonary hypertension2 7#c7 make recommendations to the ,secretary regarding appropriate changes to such activities1 including recommendations with respect to the strategic plan developed under paragraph 7#e72 7#d7 make recommendations to the ,secretary regarding stakeholder participation in decisions relating to pulmonary hypertension2 7#e7 develop and annually update a comprehensive strategic plan to cooperatively improve health outcomes for pulmonary hypertension patients which includes-- 7,a7 recommendations to improve professional education concerning accurate diagnosis and appropriate intervention for health care providers2 7,b7 recommendations to improve the transplantation criteria and process concerning lung and heart-lung transplants for pulmonary hypertension patients2 7,c7 recommendations to improve public awareness and recognition of pulmonary hypertension2 7,d7 recommendations to improve health care delivery and promote early and accurate diagnosis for pulmonary hypertension patients2 and 7,e7 recommendations to systematically advance the full spectrum of biomedical research1 including specific recommendations for basic1 translational1 clinical1 and pediatric research1 and research training and career development2 and 7#f7 submit to the ,congress the strategic plan under paragraph 7#e7 and any updates to such plan4 7c7 ,membership 7#a7 ,in general ,the ,committee shall be composed of-- 7,a7 the ,administrator of the ,health ,resources and ,services ,administration2 7,b7 the ,director of the ,centers for ,disease ,control and ,prevention and the directors of such centers at the ,centers for ,disease ,control and ,prevention as the ,secretary determines appropriate2 7,c7 the ,director of the ,national ,institutes of ,health and the directors of such institutes1 centers1 and offices at the ,national ,institutes of ,health as the ,secretary determines appropriate2 7,d7 the ,director of the ,agency for ,healthcare ,research and ,quality2 7,e7 the ,commissioner of ,food and ,drugs and the directors of such centers and offices at the ,food and ,drug ,administration as the ,secretary determines appropriate2 7,f7 the heads of other relevant agencies as the ,secretary deems appropriate2 and 7,g7 the additional members appointed under paragraph 7#b74 7#b7 ,additional members ,not fewer than #f members of the ,committee or #a_/c of the total membership of the ,committee1 whichever is greater1 shall be composed of non-,federal public members to be appointed by the ,secretary1 of which-- 7,a7 at least one such member shall be an individual with a diagnosis of pulmonary hypertension2 7,b7 at least one such member shall be the primary caregiver for an individual with a diagnosis of pulmonary hypertension2 and 7,c7 at least one such member shall be a representative of a leading research1 advocacy1 and support organization primarily serving individuals with a diagnosis of pulmonary hypertension4 7d7 ,administrative support2 terms of service2 other provisions ,the following provisions shall apply with respect to the ,committee3 7#a7 ,the ,committee shall receive necessary and appropriate administrative support from the ,secretary4 7#b7 ,members of the ,committee appointed under subsection 7c77#b7 shall serve for a term of #d years1 and may be appointed for one or more additional #d-year terms4 ,any member appointed to fill a vacancy for an unexpired term shall be appointed for the remainder of such term4 ,a member may serve after the expiration of the member's term until a successor has taken office4 7#c7 ,the ,committee shall meet at the call of the chairperson or upon the request of the ,secretary4 ,the ,committee shall meet not fewer than two times each year4 7#d7 ,all meetings of the ,committee shall be public and shall include appropriate time periods for questions and presentations by the public4 7e7 ,subcommittees2 establishment and membership ,in carrying out its functions1 the ,committee may establish subcommittees and convene workshops and conferences4 ,such subcommittees shall be composed of ,committee members and may hold such meetings as are necessary to enable the subcommittees to carry out their duties4 7f7 ,sunset ,this section shall not apply after ,september #cj1 #bjai1 and the ,committee shall be terminated on such date4 #d4 ,report to ,congress 7a7 ,in general ,on a biennial basis after the date of enactment of this ,act1 the ,secretary1 in coordination with the ,committee1 shall prepare and submit to the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate and the ,committee on ,energy and ,commerce ,committee of the ,house of ,representatives a progress report on activities related to improving health outcomes for pulmonary hypertension patients4 7b7 ,contents ,the report submitted under subsection 7a7 shall contain-- 7#a7 information on the incidence of pulmonary hypertension and trend data of such incidence since the date of enactment of the ,pulmonary ,hypertension ,research and ,diagnosis ,act of #bjac2 7#b7 information on the average time between initial screening and accurate diagnosis as well as the average stage of pulmonary hypertension when appropriate intervention begins and up-to-date1 related trend data2 7#c7 information on the effectiveness and outcomes of interventions for individuals diagnosed with pulmonary hypertension1 including-- 7,a7 mortality rate1 as well as the frequency of drastic treatment options like lung and heart-lung transplants2 and 7,b7 up-to-date1 related trend data2 7#d7 information on breakthroughs in basic science as well as translational and clinical research activities2 7#e7 information on activity to facilitate the development of innovative treatment options and diagnostic tools2 and 7#f7 information on services and supports provided to individuals with a diagnosis of pulmonary hypertension4