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.
On October 17, 2017, KEI sent a letter to the NIH regarding the failure of the University of Pennsylvania to disclose federal funding of five patented inventions for CAR T.
Today (October 18, 2017), we received this statement from the University:
“We have reviewed the letter and have confirmed that each of these patents was reported to the government as having NIH funding.
There is an update on this issue, here: /node/2882, noting that the University filed a correction to each of the five patents, reporting federal funding of the inventions.
On October 13, 2017, KEI submitted comments to the WHO regarding the Draft Concept Note towards the WHO’s 13th General Programme of Work. The Draft Concept Note is available here: http://www.who.int/about/draft-concept-note_13th-programme-work.pdf
The text of KEI’s comments follow below, and a PDF is available here.
Friday, 13 October 2017
Dear Dr. Tedros,
KEI Recommendations on the work of the SCCR on a treaty for broadcasting organizations
Prepared for WIPO General Assembly
October 4, 2017
KEI recommends taking the broadcasting treaty off the agenda of the SCCR, until (1) the proponents of the treaty can explain what they expect the treaty will do, in practical terms, (2) how the treaty will impact copyright owners and persons who want access to information distributed by broadcasters, and (3) if there is a realistic expectation of agreement on the substance of the treaty.
Attached is a letter sent on September 14, 2017 to Andrew Bremberg, an Assistant to the President and the Director of the Domestic Policy Council at the White House, and Keagan Lenihan, a Senior Adviser to HHS Secretary Tom Price, regarding Zinbrytra (INN: daclizumab), a drug to approved by the FDA to treat multiple sclerosis. (PDF version here)
Yesterday, Senator Bill Nelson (D-FL) sent a letter to Acting Secretary of the Army Robert Speer expressing strong concerns regarding the proposed exclusive license of a federally-funded Zika vaccine to Sanofi, stating that, “If the Army chooses to move forward with its plan to provide Sanofi Pasteur an exclusive license to sell this vaccine, it must first obtain assurances that the vaccine will be affordable to all who need it.” Senator Nelson is a senior member of the Committee on the Armed Services.
On June 6, 2017, Knowledge Ecology International wrote to the U.S. Department of Health and Human Services (DHHS) asking the Department to adopt a policy on the licensing of federally-funded CRISPR patented inventions. (Copy here).
For additional information, contact:
- James Love (+41.76.413.6854 thru Wed., May 31, 2017, and +1.202.361.3040 thereafter, firstname.lastname@example.org)
- Thiru Balasubramaniam (email@example.com, +41.76.508.0997)
The final text of the resolution (WHA70.12, Cancer prevention and control in the context of an integrated approach) can be found it here: http://apps.who.int/gb/ebwha/pdf_files/WHA70/A70_R12-en.pdf
On Tuesday, 30 May 2017, Knowledge Ecology International delivered the following intervention on Preparation for the third High-Level Meeting of the General Assembly on the Prevention and Control of Noncommunicable Diseases, to be held in 2018. The statement was delivered by Thiru Balasubramaniam.