On March 1st, Knowledge Ecology International sent a letter to The Hon. Mark Holland, Ministry of Health, and The Hon. François-Philippe Champagne, Minister of Innovation, Science, and Industry, urging the prompt consideration of adding risdiplam, a drug to treat spinal… Continue Reading →
At the World Health Organization’s 74th World Health Assembly, Knowledge Ecology International delivered the following remarks on expanding access to effective treatments for cancer and rare and orphan diseases including cell and gene-based therapies on Thursday, 27 May 2021. Non-state… Continue Reading →
At the meeting of the World Health Organization’s 148th Executive Board, Knowledge Ecology International delivered the following remarks on expanding access to effective treatments for cancer and rare and orphan diseases including cell and gene-based therapies on Friday, 22 January… Continue Reading →
On 16 December 2020 the World Health Organization (WHO) published a paper that delighted in the name, Expanding access to effective treatments for cancer and rare and orphan diseases, including medicines, vaccines, medical devices, diagnostics, assistive products, cell- and gene-based… Continue Reading →
KEI Briefing Note 2020:4 Selected Government Definitions of Orphan or Rare Diseases Revised October 28, 2020 Arianna Schouten Table 1: Country Definitions of Orphan or Rare Diseases Table 2: Patients per 100,000 PDF available here: KEI-Briefing-Note-2020-4-Defining-Rare-Diseases
Zolgensma is a gene therapy for spinal muscular atrophy (SMA) that was approved by the US FDA in May 2019, at a price of $2.1 million per patient. Zolgensma was licensed from a children’s hospital where it was developed on… 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 →
In an order dated April 11, 2019, Judge Peter J. Messitte granted the NIH’s motion to dismiss for lack of jurisdiction in the lawsuit filed by KEI, which appealed an NIH decision to grant an exclusive license on a CAR… Continue Reading →
On 18 December 2018, the World Health Organization (WHO) published a “Technical report on Pricing of cancer medicines and its impacts” (hereinafter referred to as the “WHO Cancer Report”). The mandate for the WHO Cancer Report emanates from operative paragraph… Continue Reading →
On July 18, 2018, the U.S. House Energy and Commerce committee gave its approval to HR 6378, the Pandemic and All-Hazards Preparedness Act, known as PAHPA. During the mark up, Reps. John Shimkus (R-IL) and Tony Cárdenas (D-CA) proposed attaching… Continue Reading →