[Congressional Record Volume 162, Number 92 (Friday, June 10, 2016)]
[Extensions of Remarks]
[Page E885]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




        IN RECOGNITION OF THE PULMONARY HYPERTENSION ASSOCIATION

                                 ______
                                 

                            HON. KEVIN BRADY

                                of texas

                    in the house of representatives

                         Friday, June 10, 2016

  Mr. BRADY of Texas. Mr. Speaker, I rise today in recognition of the 
outstanding efforts of the Pulmonary Hypertension Association (PHA) in 
the fight against the rare, debilitating disease, and potentially fatal 
condition, pulmonary hypertension (PH).
  I am proud to represent the Lone Star Chapter of PHA, located in The 
Woodlands. This disease was first brought to my attention over a decade 
ago by Chapter member, Jack Stibbs, whose daughter, Emily, had been 
recently diagnosed at an early age and given a dire prognosis. However, 
due to Emily's early diagnosis and advancements in medical research, 
including the development of innovative treatments, she has been able 
to lead a full life and even recently graduated college.
  Most patients are not as fortunate as Emily has been. PH can be 
idiopathic or occur as the result of sickle cell disease, scleroderma, 
and other conditions. Nearly 3 out of 4 PH patients are not diagnosed 
until the disease has reached a late stage, which renders many 
available therapies ineffective and leaves patients facing a much more 
serious medical intervention, such as heart-lung transplantation. PH is 
very aggressive and the average life expectancy without an accurate 
diagnosis and proper treatment is just under 3 years.
  I continually work with my colleagues in Congress to advance efforts 
that seek to lower healthcare costs, promote quality, and improve 
outcomes for patients. This is why I work with the PH community to call 
attention to important legislative efforts, including the Pulmonary 
Hypertension Research and Diagnosis Act (H.R. 3520), which seeks to 
leverage limited resources to ensure more PH patients are diagnosed at 
an early stage and can benefit from treatments like Emily has.
  This June, the PH community will be gathering in Texas for their 
Semi-Annual International Conference. This is a bittersweet engagement 
as it will be the last Conference for Rino Aldrighetti, who has served 
as President and CEO of PHA for 17 incredible years. After PHA was 
founded around a kitchen table by passionate advocates seeking to 
improve the lives of affected individuals and families, Rino was one of 
the first employees the organization hired. Under Rino's leadership the 
organization grew from modest beginnings to an agent for meaningful 
change. Today, PHA has expanded to an organization of more than fifty 
staff with a budget of $13 million. When Rino started most medical 
professionals knew little about the disease. There was one FDA approved 
therapy available, but far too frequently, patients died waiting for a 
diagnosis. But now, thanks to PHA, coordinated research and patient 
support efforts we have 14 FDA approved treatment options for PH, and 
PHA's Research Program has committed more than $17 million to support 
cutting edge research focused on PH. In addition, more than 80 
independent PH associations have been established around the world, and 
PHA has signed Memorandum of Understanding with 35 nations.
  More can be done though. I ask my colleagues to recognize Rino and to 
honor his legacy of service to the PH community by supporting PH 
patients and early diagnosis legislation.

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