[Congressional Record (Bound Edition), Volume 145 (1999), Part 5]
[Senate]
[Page 7404]
[From the U.S. Government Publishing Office, www.gpo.gov]




SENATE RESOLUTION 84--TO DESIGNATE THE MONTH OF MAY, 1999, AS NATIONAL 
                        ALPHA 1 AWARENESS MONTH

  By Ms. SNOWE (for herself, Mr. Helms, Mr. Grams, Mr. Robb, Mr. 
Durbin, Mr. Edwards, Mr. Cleland, Mr. Hatch, Mr. Torricelli, Mr. Mack, 
Mr. Crapo, Mr. Graham, Mr. Lautenberg, and Mr. Dodd) submitted the 
following resolution; which was referred to the Committee on the 
Judiciary.

                               S. Res. 84

       Whereas alpha1-antitrypsin deficiency (A1AD) is 
     the most common lethal single gene defect in the United 
     States;
       Whereas A1AD, having been identified only since 1963, is as 
     common as cystic fibrosis, but is neither well known, nor 
     well understood by many physicians and is virtually unknown 
     by the general public;
       Whereas A1AD is seen as a liver disease in infants and 
     young children, as a lung or liver disease in young adults, 
     and may be misdiagnosed as asthma, chronic bronchitis or 
     smoker's emphysema due to lack of knowledge or understanding 
     about this disease;
       Whereas A1AD is particularly devastating to families since 
     it strikes during the peak earning and child rearing years;
       Whereas 80,000 to 100,000 persons in the United States are 
     affected by the disease while only 5 percent have been 
     identified; and
       Whereas liver and lung transplants are sought by many 
     individuals suffering from A1AD, detection screenings, 
     educational conferences and other scheduled events will help 
     raise awareness for early identification and organ donation: 
     Now, therefore, be it
       Resolved, That the Senate--
       (1) designates the month of May 1999 as ``National 
     Alpha1 Awareness Month''; and
       (2) requests that the President issue a proclamation 
     calling upon the people of the United States to observe the 
     month with appropriate programs and activities.

  Ms. SNOWE. Mr. President I rise today to submit a resolution to raise 
national awareness of Alpha 1-antitrypsin definiency. I am so pleased 
to be joined by 15 of my colleagues. Our resolution officially declares 
May 1999 as ``National Alpha 1 Awareness Month.''
  Alpha-1 is a genetic condition that can cause severe early onset 
emphysema, liver disease in both children and adults, or more rarely, a 
skin condition called panniculitis. In infants, Alpha-1 causes neonatal 
cirrhosis of the liver, which is sometimes fatal. In adults, Alpha-1 
can lead to pulmonary emphysema and or cirrhosis of the liver. This 
disease normally strikes young adults in their 30s and 40s.
  Alpha-1 was first identified in 1963 and is the most common lethal 
single gene defect in the United States. It is as common as cystic 
fibrosis but it is neither well known, nor well understood by many 
physicians, and is virtually unknown to the American public.
  An estimated 5,000 people have been diagnosed with Alpha 1-
antitrypsin deficiency in the United States and statistical estimates 
indicate that there should be 80,000 to 100,000 people total in this 
country. In fact, one in 37 people are Alpha-1 carriers of this genetic 
defect. A simple blood test can detect Alpha-1 antitrypsin levels and 
let people know if they are carriers or have this genetic defect. In 
fact, in 1998, the Maine chapter of the Alpha-1 National Association 
Support Group screened 105 people for the genetic defect and found 15 
carriers.
  Alpha-one antitrypsin deficiency can be a devastating disease. 
Symptoms of Alpha-1 are similar to those of other respiratory diseases, 
and often Alpha-1 emphysema is accompanied by asthma, bronchitis, and 
chronic obstructive pulmonary disease. The most common indicators of 
Alpha-1 include worsening shortness of breath, a chronic cough and 
abnormal liver test results.
  The good news is that many Alphas can stay healthy into old age, 
especially if they never smoke, avoid pollution, lung irritants, and do 
not suffer from frequent lung infections. The bad news is that there 
are many Alphas who are misdiagnosed for years, and this misdiagnosis 
can cause additional irreversible lung damage.
  By declaring May, 1999 as ``National Alpha 1 Awareness 
Month'' we hope bring the problem of Alpha-1 antitrypsin deficiency to 
the attention to the Senate. I urge my colleagues who have not yet 
joined us on this important issue to add their name to the public call 
for increased national awareness of this genetic condition.

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