(Update: The NIH provided a response to our comments on November 15, 2019) On Friday October 18, 2019, Knowledge Ecology International and the Union for Affordable Cancer Treatment (UACT) submitted comments on the “Prospective Grant of an Exclusive Patent License:… Continue Reading
On Friday October 11, 2019, Knowledge Ecology International and the Union for Affordable Cancer Treatment (UACT) submitted comments to the Federal Register notice (84 FR 51171) for the “Prospective Grant of Exclusive Patent License: Capsid-Free AAV Vectors, Compositions, and Methods… Continue Reading
The UK Labour Party Document, “Medicines-For-The-Many” is 52 pages long, including 9 pages of end notes. It is an ambitious document. The document discusses, in some detail, innovation as well as access and affordability. The reforms proposed include measures that… Continue Reading
Today, in his address to the U.K. Labour party conference, Labour Leader Jeremy Corbyn made the following statement on drug patents and prices. Yesterday I met Luis Walker, a wonderful nine-year-old boy. Luis is living with cystic fibrosis. Every day… Continue Reading
(UPDATE: As noted in the comments below, the NIH provided a response to the joint comments submitted on September 5, 2019, well in advance of the close of the comment period on September 15, 2019) On September 19, 2019, Knowledge… Continue Reading
(UPDATE: The NIH provided a response to our comments on September 26, 2019) On September 13, 2019, Knowledge Ecology International (KEI), Union for Affordable Cancer Treatment (UACT), Public Citizen (PC), Social Security Works (SSW), LWC Health, Ruth Lopert, Manon Ress,… Continue Reading
On September 9, 2019, KEI submitted a second request to the NIH that it investigate an apparent failure to disclose federal funding in patents in adeno-associated viral (AAV) gene therapies assigned to the Trustees of the University of Pennsylvania (UPenn).… Continue Reading
On September 3, 2019, KEI submitted a request to the NIH that it investigate an apparent failure to disclose federal funding in patents in adeno-associated viral (AAV) gene therapies. A failure to disclose federal funding is a violation of the… Continue Reading
On September 12, 2019, Knowledge Ecology International (KEI), Union for Affordable Cancer Treatment (UACT), Universities Allied for Essential Medicines (UAEM), Social Security Works (SSW), and Clare Love filed an appeal with the National Institutes of Health (NIH). The signatories appealed… Continue Reading
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