Request for Amendment to add Risdiplam for Spinal Muscular Atrophy (SMA) to Schedule 1 of the Canadian Patent Act

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

WHA74: KEI’s statement on expanding access to effective treatments for cancer and rare and orphan diseases including cell and gene-based therapies

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

WHO EB 148: KEI’s statement on expanding access to effective treatments for cancer and rare and orphan diseases including cell and gene-based therapies

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

EB 148: WHO board paper on expanding access to effective treatments of cancer and rare and orphan diseases including cell and gene-based therapies

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

Zolgensma

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

WHO Cancer Report – Key findings

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

As Pandemic Preparedness bill clears House committee, effort to include antibiotics transferable exclusivity extension fails

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