This page features KEI blog posts, testimony, comments, and research on the transparency of the costs of research and development in the pharmaceutical sector. United States Transparency Legislation 16 March 2017: KEI testifies before a Maryland House of Delegates Subcommittee… Continue Reading
In the area of Transparency, KEI works on several different topics, including for example: Norm setting. KEI has advocated access to meeting venues, timely disclosures of negotiating texts, and the use of webcasting of meetings, among other measures. Trade negotiations… 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
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,
Knowledge Ecology International (KEI) delivered the following statement during discussions at the WHO South East Asia Region (SEARO) Regional Committee on Access to Medicines on 9 September 2017 in the Maldives.
(Photo taken by Cristina Bajar)
Intervention of Knowledge Ecology InternationalSeventieth Session of the Regional Committee – SEARO: 8.3 Access to medicines – SEA/RC70/9
Saturday, 9 September 20172017: miRecule/NIH license on MicroRNA Therapeutics for Treating Squamous Cell Carcinomas
Attached (PDF file here) are the KEI comments on the proposed NIH exclusive license to miRecule for MicroRNA Therapeutics for Treating Squamous Cell Carcinomas.
The seven page letter concludes with these words:
KEI Statement on House Letter to President Trump on the Protection of Taxpayers’ Rights in Federally-Funded Inventions
4 APRIL 2017
FOR IMMEDIATE RELEASE
CONTACT: Zack Struver, zack.struver@keionline.org or +1 (202) 332-2670In a letter sent today, Representative Lloyd Doggett, D-Texas, and 50 other democratic members of Congress requested that President Donald J. Trump issue guidance for the use of Bayh-Dole Act march-in rights in order to protect taxpayer’s rights in federally-funded patented inventions.
The following statement should be attributed to James Love, Director of Knowledge Ecology International (KEI):
“The letter from members of Congress on the need to protect taxpayer’s rights in the inventions they fund is important, timely, and directly related to the challenge of providing affordable health care to everyone. Federally-funded inventions are now routinely placed on the market at extremely high prices. Astellas charges more than $350 per day for the prostate cancer drug Xtandi, and BioGen is charging $1.125 million for the first two years of Spinraza, which is used to treat spinal muscular atrophy in mostly young children. The notion that the federal government will not engage on the pricing of these products runs counter to the explicit provisions in the Bayh-Dole Act that require inventions be made ‘available to the public on reasonable terms.’ The President can curb high prices for these drugs without new legislation, and without putting patients at risk.”
KEI filed the most recent march-in request with the federal government on the prostate cancer drug Xtandi.
The letter is available as a PDF here and below in plain text.
Representative Doggett’s office issued the following press release: https://doggett.house.gov/media-center/press-releases/congressional-democrats-trump-we-re-calling-your-hand-lower-prescription
KEI Testifies in Maryland on Drug R&D Cost Transparency Bill (HB666/SB437)
James Love and Andrew Goldman represented KEI on March 16, 2017, in a working group meeting of a subcommittee of the Maryland General Assembly House of Delegates Health & Government Operations Committee, where they testified on HB666/SB437, a bill that would establish transparency of R&D costs for prescription drugs sold in Maryland.
Vincent DeMarco of at Health Care for All! and Dr. Reshma Ramachandran of the Johns Hopkins Bloomberg School of Public Health also testified at the hearing.
Continue ReadingKEI Submission to Oregon Senate on R&D Cost Transparency Provisions in SB 793
Today, KEI submitted written testimony on SB 793 — a bill that is designed to allow the Oregon Department of Consumer and Business Services to investigate price increases for prescription drugs — in advance of a hearing before the Oregon Senate Committee on Health Care at 1:00 P.M. (PST) on March 9, 2017.
Summary of Report of United Nations Secretary-General’s High-Level Panel on Access to Medicines
On September 14, 2016, the United Nations Secretary-General’s High-Level Panel on Access to Medicines released its report, in which they had a mandate to “review and assess proposals and recommend solutions for remedying the policy incoherence between the justifiable rights of inventors, international human rights law, trade rules and public health in the context of health technologies.”[1]