Zolgensma, Novartis’s new $2.1 million gene therapy for children with spinal muscular atrophy (SMA), is a remarkable breakthrough with a steep price tag: the cost per child is $2.125 million. The treatment was developed using research funded by the National… Continue Reading
KEI has a page on Charity and NIH funding related to Zolgensma, here: https://www.keionline.org/charity-nih-funding-related-to-zolgensma
Today the World Health Assembly (WHA) approved A72/A/CONF./2 Rev.1 as a resolution, titled “Improving the transparency of markets for medicines, vaccines, and other health products.” Link to the resolution: http://apps.who.int/gb/ebwha/pdf_files/WHA72/A72_ACONF2Rev1-en.pdf When the text was made available, I sent out a… Continue Reading
One of the reasons why drug companies have fought so hard to block transparency of clinical trial costs is the growing gap between what the public had been told those costs are, and the actual costs, particularly for treatments for… Continue Reading
An earler version of this was posted to ip-health. —– As the #TransparencyResolution finally moves onto the #WHA72 agenda, I would like to offer a few comments on the process. We have copies of six versions of the negotiating text,… Continue Reading
On Thursday May 23, 2019, KEI, Doctors without Borders/Médecins Sans Frontières (MSF), and 44 more organizations and 10 individuals released an open letter to delegates of the 72nd World Health Assembly urging them to support a strong resolution on transparency… Continue Reading
The WHO has published A72/A/CONF./2, for Agenda item 11.7. The date of the document is 23 May 2019, but it is the end of day negotiating text from Wed, May 22. The title is: Improving the transparency of markets for… Continue Reading
On Wednesday May 22, 2019, KEI delivered the following intervention at the 72nd World Health Assembly for the agenda item, “11.5 – Universal Health Coverage.” A PDF version is available here. KEI Statement – WHA72 11.5 – Universal Health Coverage… Continue Reading
Perhaps the toughest issue in the 72nd World Health Assembly negotiations on a WHO transparency resolution concerns the proposal to require public reporting of the costs of each clinical trial undertaken for development of drugs, vaccines, cell- and gene-therapies and… 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