Kathryn Ardizzone is Counsel with Knowledge Ecology International. Her background is in public interest and civil rights law. Kathryn joined KEI in June 2019 after working for Essential Information, a nonprofit organization founded by Ralph Nader that supports a variety… Continue Reading
June 14, 2019 Zolgensma, the Novartis brand name for the new $2.1 million gene therapy for treatment of Spinal Muscular Atrophy (SMA), appears to be a remarkable medical breakthrough treatment. It is also, like all of the new cell- and… Continue Reading
See https://keionline.org/transparency for links to research materials and blogs. Background Memo on Transparency Norms 2019. February 18. Note prepared for WHA negotiations on transparency resolution Examples of SEC disclosures Negotiating texts for WHA 72, on transparency. February 1, 2019. Draft… Continue Reading
On Monday, 20 May 2019, the Republic of Korea, Italy, Costa Rica, Greece, Indonesia, Italy, Mexico, Mongolia, Netherlands, Portugal, Republic of Korea, Saudi Arabia, Spain, and Vietnam convened an official side event at the 72nd session of the World Health… Continue Reading
Politico has published a copy of the new draft of the World Health Assembly (WHA) transparency resolution. WHA-Resolution_DRAFT_20-05-2019 The Politico account cites the disclosure of clinical trial costs as one area for transparency that is strongly opposed by some governments,… Continue Reading
In advance of the 72nd World Health Assembly (20 May 2019 – 28 May 2019), the World Health Organization (WHO) published a document (A72/INF./5, 9 May 2019) entitled, Voluntary contributions by fund and by contributor, 2018. Total voluntary contributions to… Continue Reading
DATE: Thursday May 9, 2019 RE: Civil Society Open Letter Regarding Harmful Changes to WHA Transparency Resolution 9 May 2019 – Today more than 100 civil society organizations and health experts sent an open letter to World Health Organization (WHO)… Continue Reading
On Monday May 6, 2019, KEI gave the following intervention during the Department of Health and Human Services (HHS) Listening Session in advance of the Seventy-second World Health Assembly to be held in Geneva on May 20-28, 2019. KEI Statement… Continue Reading
In April 2019, the World Intellectual Property Organization (WIPO) published a new version (SCCR/38/10) of the WIPO Treaty for the Protection of Broadcasting Organizations. Currently, the proposed treaty anticipates the scope of application to include new beneficiaries such as on-demand… Continue Reading
116th Congress Senate S.102 – Prescription Drug Price Relief Act of 2019 S.366 – FLAT Prices Act S.378 – Stop Price Gouging Act S.474 – Stopping the Pharmaceutical Industry from Keeping drugs Expensive (SPIKE) Act of 2019 S.476 – Creating… Continue Reading