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) Member State delegates urging them to oppose harmful proposed changes to the draft World Health Assembly (WHA) resolution on transparency to be discussed at the 72nd WHA on May 20-28, 2019 in Geneva, Switzerland. The groups and individuals signing the open letter said they were appalled at proposals put forth at informal negotiations at the WHO on Tuesday May 7, 2019, which, “would make thisRead More →

On Monday May 6, 2019, the Union for Affordable Cancer Treatment (UACT) submitted a letter to the Minister of Health urging Canada’s support of a proposed resolution on transparency to be discussed that the Seventy-second World Health Assembly this May. The proposed resolution provides a strong global mandate to expand the transparency of pricing, R&D costs, intellectual property rights and medical outcomes, for life-saving medical technologies. Currently, the resolution has garnered ten co-sponsors. See below for links to: UACT Letter to MOH of Canada Urging Support of WHA Transparency Resolution Draft of WHA72 Transparency Resolution (as of May 6, 2019) Text of the letter sentRead More →

24 April 2019 – Today the Department of Commerce’s National Institute of Standards and Technologies (NIST) released its Green Paper on Return on Public Investment. The Union for Affordable Cancer Treatment (UACT) strongly opposes this push by the Trump Administration to hamstring patient safeguards ensuring equitable and affordable access to medicines. A draft Green Paper published on December 6, 2018 included proposals designed to narrow and even eliminate important safeguards in the Bayh-Dole Act. Those damaging proposals remained in the final publication. The NIST proposals will harm patients seeking access to treatment and will instead protect the pharmaceutical companies that sell expensive drugs, vaccines, diagnosticRead More →

In December 2018, the National Institute of Standards and Technologies (NIST) (a part of the Department of Commerce) published a draft Green Paper, titled “Return on Investment Initiative for Unleashing American Innovation” (NIST Special Publication 1234). A copy of the draft Green Paper is available here: https://doi.org/10.6028/NIST.SP.1234 The draft Green Paper was published after the launch of an April 2018 initiative, “Unleashing American Innovation Symposium” and followed four public hearings and a request for comments noticed on May 1, 2018 (83 FR 19052). The initial comment period closed July 30, 2018. UACT drafted a letter to raise the alarm in members of Congress that anRead More →

On Wednesday December 5, 2018, UACT, along with KEI, Social Security Works, Health GAP, Public Citizen, Dr. Ophira Ginsburg, and James Love, submitted joint comments in response to a proposed exclusive license for patents on CAR T technology for the treatment of cancers. The Federal Register notice (83 FR 58262) “Prospective Grant of an Exclusive Patent License: Development and Commercialization of Chimeric Antigen Receptor (CAR) Therapies for the Treatment of FMS-Like Tyrosine Kinase 3 (FLT3) Expressing Cancers,” outlined the National Institutes of Health’s intent to grant an exclusive license on these technologies to ElevateBio, a company whose leadership includes the investors behind recent budget-breaking treatments,Read More →