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INTRODUCTION OF THE PULMONARY HYPERTENSION ACT OF 2001
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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

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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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