[Congressional Record (Bound Edition), Volume 147 (2001), Part 4]
[Extensions of Remarks]
[Page 5118]
[From the U.S. Government Publishing Office, www.gpo.gov]


[[Page 5118]]

         INTRODUCTION OF THE PULMONARY HYPERTENSION ACT OF 2001

                                 ______
                                 

                            HON. KEVIN BRADY

                                of texas

                    in the house of representatives

                        Thursday, March 29, 2001

  Mr. BRADY of Texas. Mr. Speaker, today I am introducing the Pulmonary 
Hypertension Act of 2001. In short, this legislation will ensure 
greater federal resources are devoted to Pulmonary Hypertension 
research at the National Heart, Lung, and Blood Institute (NHLBI) and 
complement the private efforts of the PH Community.
  Pulmonary Hypertension (PH) is a rare lung disorder in which the 
pressure in the pulmonary artery rises above normal levels and may 
become life threatening. When pulmonary hypertension occurs in the 
absence of a known cause, it is referred to as primary pulmonary 
hypertension (PPH). PPH is extremely rare, occurring in about two 
persons per million population. As of 1998, approximately 5-10 thousand 
individuals suffered from this disease--the greatest number reported in 
women between the ages of 21 and 40. Nonetheless we now know that men 
and women in all age ranges, from very young children to elderly 
people, can develop PPH. It also affects people of all racial and 
ethnic origins equally.
  I first became aware of this illness a couple of years ago when one 
of my constituents and close friend came to speak to me about a disease 
his now eight year-old daughter, Emily, had just recently been 
diagnosed with. At that time, the family was informed that there was no 
cure for PPH, and that Emily could not be expected to live beyond 3-5 
years. I began to think that in order to get Emily and other PH 
sufferers a chance to really experience life, the federal investment in 
Pulmonary Hypertension must be expanded to take full advantage of the 
tremendous potential for finding a cure or effective treatment.
  Why does the federal government have a role in our fight against 
Pulmonary Hypertension? Pulmonary hypertension is frequently 
misdiagnosed and has often progressed to late stage by the time it is 
accurately diagnosed. More importantly, PH has been historically 
chronic and incurable. This unpredictable survival rate has not been 
encouraging to patients, their families or physicians. Furthermore, in 
1996-97 almost six million, Americans took anorexic drugs which can 
cause PPH in some people. Thousands now have PPH and are in terminal 
stages or have already succumbed to the disease. It is anticipated that 
many more cases of PPH from diet drugs will be diagnosed within the 
coming years.
  I also believe that federal resources will complement the dollars and 
efforts the Pulmonary Hypertension community is doing on their own. 
This public-private partnership will also help ensure that everyone is 
working together so that we get the most ``bang for the buck.''
  However, thanks to efforts Congress has taken in the past, the 
efforts of the pulmonary hypertension community, and the National 
Heart, Lung, and Blood Institute (NHLBI), that is beginning to change. 
New treatments are available that now allow some patients to manage the 
disorder for 15 to 20 years or longer, although most Pulmonary 
Hypertension sufferers are not that fortunate.
  I am pleased that in 1981, NHLBI established the first PPH-patient 
registry in the world. The registry followed 194 people with PPH over a 
period of at least 1 year and, in some cases, for as long as 7.5 years. 
Much of what we know about the illness today stems from this study. 
But, we still do not understand the cause or have a cure for PPH.
  Mr. Speaker, we are at a fork in the road. We can either take the 
road that becomes a dead-end, or with the Committee's help, we can take 
the road that provides a future for the individuals and families of 
Pulmonary Hypertension.

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