Orphan drug coalition formed to attain permanent tax credit.

ORPHAN DRUG COALITION FORMS TO ATTAIN PERMANENT TAX CREDIT in anticipation of the orphan drug tax credit's expiration May 31. The effort is being spearheaded by the National Organization for Rare Disorders and the Biotechnology Industry Organization with the support of the Washington, D.C. law firm Fox, Bennett & Turner.

At present, the coalition has about 20 members. Participating drug companies include Bristol-Myers Squibb, Serono, Genzyme and Glaxo Wellcome. Patient groups include the Epilepsy Foundation, the National Multiple Sclerosis Society and the American Immune & Related Diseases Association. NORD represents about 140 rare disease patient groups.

The coalition reflects an attempt by industry and patient groups representing people with rare diseases to separate the orphan drug tax credit from the research and experimentation tax credit, which is more expensive. Establishing a formally recognized group with a specific agenda could also contribute to an organized lobbying effort as members of Congress establish their priorities for the 105th Congress.

The group has not yet approached any legislators about introducing a reauthorization for the orphan drug tax credit. Two years ago, Sens. Hatch (R-Utah) and Baucus (D-Mont.) sponsored legislation that would have made the orphan drug tax credit permanent. In the House, Reps. Johnson (R-Conn.) and Matsui (D-Calif.) sponsored legislation for a permanent credit ("The Pink Sheet" July 24, 1995, T&G-16).

In 1996, the House-Senate conference agreement on the Small Business Job Protection Act (HR 3448) extended the R&E and orphan drug tax credits from July 1, 1996 through May 31, 1997. Although both credits had expired in 1995, the legislation did not fill the gap because to do so would have required the creation of a retroactive offset ("The Pink Sheet" Aug. 5, 1996, p. 4).