Public and Private Sector Funded Research for Fabry’s Disease KEI Research Note 2010:2 23 July 2010 Introduction Fabry’s disease is a rare genetic multisystemic disorder associated with progressive lipid accumulation and cell damage, leading to a variety of aliments, including… Continue Reading
On February 14, the NIH was asked what the budget was for the Phase 1 clinical trial of the anti-CD30 CAR T technology that is the subject of a proposed exclusive patent license to Kite/Gilead. The clinicaltrials.gov identifier for the… Continue Reading
Pages on the 2012-2013 NIH Request October 15, 2013. 15 frequently asked questions about the 2012 ritonavir March-In petition /node/1815 October 8, 2013. Congress asked to hold hearings on NIH failure to address abuses of government financed medical inventions /node/1805… Continue Reading
On February 9, 2018, the Trump Administration released a paper by the Counsel of Economic Advisers (CEA) on drug pricing. The paper on pricing was thought to have been led by economist Tomas Philipson, appointed to the CEA by President… Continue Reading
NIH rejects Fabrazyme March-In Petition December 7, 2010. Press release from Fabry patients: DHHS denies patient’s march-in request to end Genzyme’s rationing of treatment for Fabry Disease citing that FDA rules block manufactures from supplying the drug in a timely… Continue Reading
(More on government funded inventions here: https://keionline.org/government-funded-inventions) On December 9, 2016, the U.S. Army announced its intent to grant an exclusive license to Sanofi on patents for a U.S. Army-developed Zika vaccine. KEI and various other non-profit groups have filed… Continue Reading
This page has some broken links, due to some issues with our hosting company. The issues should be fixed soon.—– KEI efforts to address pricing and other public interest issues in more than 22 different NIH licensing cases, involving both… Continue Reading
Contact: Kim Treanor 202-332-2670; firstname.lastname@example.org January 5, 2018 The National Institutes of Health (NIH) has proposed an exclusive license with Gilead for certain patent applications for inventions that target CD-30 proteins and CAR T technologies. The proposed license is to… Continue Reading
(More on government funded inventions here. Other KEI comments on NIH licenses are found here.) On November 30, 2017, KEI has received a response from the National Institute of Allergy and Infectious Diseases regarding our previous joint comments with MSFon the proposed exclusive… Continue Reading
Statement by James Love, KEI Director, on GOP proposal to eliminate the Orphan Drug Tax Credit.
The GOP proposal to eliminate the Orphan Drug Tax Credit may create a new opportunity to reform the incentives for rare diseases, even if the tax bill fails or the tax credit survives. The GOP tax bill shows there is weaker support for the existing regime than many thought.