[Congressional Bills 108th Congress]
[From the U.S. Government Publishing Office]
[H. Con. Res. 147 Referred in Senate (RFS)]
1st Session
H. CON. RES. 147
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
May 20, 2003
Received and referred to the Committee on the Judiciary
_______________________________________________________________________
CONCURRENT RESOLUTION
Commemorating the 20th anniversary of the Orphan Drug Act and the
National Organization for Rare Disorders.
Whereas Congress passed, and President Ronald Reagan signed into law on January
4, 1983, the Orphan Drug Act;
Whereas there are many diseases and conditions, such as Huntington's disease,
myoclonus, ALS (Lou Gehrig's disease), Tourette syndrome, and muscular
dystrophy, that affect such small numbers of individuals--populations
under 200,000--residing in the United States that the diseases and
conditions are considered rare;
Whereas there are 6,000 known rare diseases and conditions, affecting
approximately 25,000,000 Americans;
Whereas these rare diseases and conditions are sometimes referred to as
``orphan'' diseases and conditions, and drugs (including biological
products) to treat them are sometimes referred to as ``orphan drugs'';
Whereas, prior to 1983, because so few individuals were affected by any one
orphan disease or condition, a pharmaceutical company that developed an
orphan drug may have reasonably expected the drug to generate relatively
small sales in comparison to the cost of developing the drug and,
therefore, to incur a financial loss;
Whereas the object of the Orphan Drug Act was to stimulate the development of
orphan drugs;
Whereas the Orphan Drug Act is one of the most successful Federal laws enacted
in the last 20 years;
Whereas, prior to 1983, less than 40 therapies existed to treat orphan diseases
and conditions as compared today to the more than 238 drugs, foods, and
devices that now exist to treat an estimated 11,000,000 patients in the
United States;
Whereas 85 percent of orphan drugs are being used to treat serious or life-
threatening diseases, 31 percent treat rare forms of cancer, and
approximately 50 percent are approved for pediatric uses;
Whereas the National Organization for Rare Disorders, established in 1983, is a
federation of voluntary health organizations dedicated to helping people
with orphan diseases and conditions and assisting the organizations that
serve them; and
Whereas the National Organization for Rare Disorders is committed to the
identification, treatment, and cure of orphan diseases and conditions
through programs of education, advocacy, research, and service: Now,
therefore, be it
Resolved by the House of Representatives (the Senate concurring),
That the Congress celebrates the 20th anniversary of the Orphan Drug
Act and the National Organization for Rare Disorders, and recognizes
the great contributions the Orphan Drug Act has made to the rare
disease community.
Passed the House of Representatives May 19, 2003.
Attest:
JEFF TRANDAHL,
Clerk.