NIH Refuses to Use Rights to Improve Access to Taxpayer-Funded Medicine

On Tuesday, the National Institutes of Health refused to use government march-in rights to help improve access to Fabrazyme, the only treatment for the rare and life-threatening illness, Fabry disease.  Fabrazyme is wildly expensive and because of production problems, Genzyme has been rationing care.  Currently, newly diagnosed patients cannot receive treatment while current patients suffer due to reduced drug regimens.  Patients and civil society groups asked NIH to use its rights under the Bayh-Dole act to allow other companies to produce the medicine.  The government has right to allow use of the patents in the medicine that were discovered with public funds.  NIH didn't hold a hearing or accept comment on the issue before issuing the refusal.

The government has never used march-in rights to protect the public interest in cases of abuse by companies involving medicines discovered with taxpayer dollars.  We are now trying to export the broken US model to other countries.

You can read the full story and the letter Knowledge Ecology International, UAEM and other civil society groups sent to the NIH here: http://www.keionline.org/fabrazyme

Statement of Ethan Guillen, UAEM Executive Director on the NIH refusal:

"It is astounding that the NIH has once again refused to exercise its right to protect the public from abuse and negligence with a medicine discovered with taxpayer dollars.  Universities, government and industry are currently celebrating the 30th anniversary of the Bayh-Dole Act that put in place public interest safeguards for medicines discovered with public money.  The reason for the anniversary celebration must be that no matter what the corporate abuse whether it be exorbitantly high prices or lack of availability, Big Pharma has won 100% of the time.  Because of this, Fabry patients continue to suffer needlessly.  The NIH clearly needs to take requests to protect the public interest seriously and provide, at a minimum, an opportunity for public comment or better yet, a public hearing.  I hope we have a full hearing of the issue on appeal, including input from public interest groups and those Fabry patients suffering due to the exorbitant prices and inadequate quantities of Fabryzyme."