,,ii #aadth ,,congress #b;d ,session ,s4 #ccfa ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,september #bj1 #bjaf,mr4 ,casey 7for himself and ,mr4 ,king7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to amend the ,public ,health ,service ,act to establish an interagency coordinating committee on pulmonary hypertension1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,pulmonary ,hypertension ,research and ,diagnosis ,act of #bjaf4 #b4 ,interagency pulmonary hypertension coordinating committee established ,part ,p of title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhj;g et seq47 is amended by adding at the end the following new section3 #cii,v-#g4 ,interagency ,pulmonary ,hypertension ,coordinating ,committee 7a7 ,committee established ,the ,secretary shall establish a committee1 to be known as the ,interagency ,pulmonary ,hypertension ,coordinating ,committee 7in this section referred to as the ,committee71 to coordinate all efforts within the ,department of ,health and ,human ,services concerning pulmonary hypertension4 7b7 ,responsibilities ,the ,committee shall-- 7#a7 develop and annually update a summary of the advances made in research on1 and treatment and diagnosis of1 pulmonary hypertension2 7#b7 develop and annually update a summary of the advances made in access to care for individuals with a diagnosis of pulmonary hypertension2 7#c7 monitor pulmonary hypertension research1 services1 and support activities across the ,federal ,government1 including coordination of ,federal activities and programs with respect to pulmonary hypertension2 7#d7 develop and annually update a comprehensive strategic plan under subsection 7c7 to improve health outcomes for individuals with a diagnosis of pulmonary hypertension2 and 7#e7 develop and annually update the progress made in implementing such comprehensive strategic plan4 7c7 ,strategy ,not later than one year after the date of the enactment of the ,pulmonary ,hypertension ,research and ,diagnosis ,act of #bjaf and annually thereafter1 the ,committee shall submit to ,congress and the ,secretary a strategy to improve health outcomes for individuals with a diagnosis of pulmonary hypertension4 ,such strategy shall include the following3 7#a7 ,recommendations to advance research on pulmonary hypertension4 7#b7 ,recommendations to improve the transplantation criteria and process concerning lung and heart-lung transplants for individuals with a diagnosis of pulmonary hypertension4 7#c7 ,recommendations to improve public awareness and recognition of pulmonary hypertension4 7#d7 ,recommendations to improve health care delivery for individuals with a diagnosis of pulmonary hypertension4 7#e7 ,recommendations to improve the early and accurate diagnosis of pulmonary hypertension4 7#f7 ,recommendations to systematically advance the full spectrum of biomedical research on pulmonary hypertension4 7d7 ,membership 7#a7 ,in general ,the ,committee shall be composed of-- 7,a7 the ,director of the ,agency for ,healthcare ,research and ,quality2 7,b7 the ,assistant ,secretary of the ,administration for ,children and ,families2 7,c7 the ,director of the ,centers for ,disease ,control and ,prevention2 7,d7 the ,administrator of the ,centers for ,medicare ,medicaid ,services2 7,e7 the ,secretary of ,defense2 7,f7 the ,commissioner of ,food and ,drugs2 7,g7 the ,administrator of the ,health ,resources and ,services ,administration2 7,h7 the ,director of the ,national ,institutes of ,health2 and 7,i7 the non-,federal members appointed under paragraph 7#b74 7#b7 ,non-,federal members ,not fewer than #f members of the ,committee or one-third of the total membership of the ,committee1 whichever is greater1 shall be composed of non-,federal members to be appointed by the ,secretary1 of which-- 7,a7 at least #b shall be individuals with a diagnosis of pulmonary hypertension2 7,b7 at least #a shall be the parent or guardian of an individual with a diagnosis of pulmonary hypertension2 7,c7 at least #a shall be a representative of a pharmaceutical company that manufactures a drug or device for detecting1 preventing1 or treating pulmonary hypertension2 and 7,d7 at least #a shall be a representative of a leading research1 advocacy1 or support organization primarily serving individuals with a diagnosis of pulmonary hypertension4 7e7 ,meetings ,the ,committee shall meet not fewer than #b times each year4 ,all meetings shall be open to the public4 7f7 ,termination date ,the ,committee shall terminate on the date that is #e years after the date of the enactment of the ,pulmonary ,hypertension ,research and ,diagnosis ,act of #bjaf4 4 #c4 ,report to ,congress 7a7 ,report required ,not later than #b years after the date of the enactment of this ,act1 the ,secretary of ,health and ,human ,services1 in coordination with the ,interagency ,pulmonary ,hypertension ,coordinating ,committee1 shall prepare and submit to the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate and the ,committee on ,energy and ,commerce of the ,house of ,representatives a progress report on activities related to improving health outcomes for individuals with a diagnosis of pulmonary hypertension4 7b7 ,contents of report ,the report submitted under subsection 7a7 shall contain-- 7#a7 information on the incidence of pulmonary hypertension including such incidence since the date of the enactment of this ,act2 7#b7 information on the prevalence of pulmonary hypertension in children and adults2 7#c7 information on the average time between the initial screening and the accurate diagnosis of pulmonary hypertension2 7#d7 information on the average stage of pulmonary hypertension when appropriate intervention begins2 7#e7 information on the effectiveness and outcomes of interventions for individuals with a diagnosis of pulmonary hypertension1 including-- 7,a7 mortality rate2 and 7,b7 the frequency of drastic treatment options such as lung and heart-lung transplants2 7#f7 information on new developments in research activities2 7#g7 information on innovative treatment options and diagnostic tools2 and 7#h7 information on services and supports available to individuals with a diagnosis of pulmonary hypertension4 7c7 ,publication ,the ,secretary of ,health and ,human ,services shall make the report submitted under subsection 7a7 available on the public ,internet ,web site of the ,department of ,health and ,human ,services4