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 →

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 →

Today President Trump promised (again) that he would bring down drug prices and put American patients first. The administration’s approach is to change how Medicare Part B (coverage available as an option for American residents when they are 65 years old or older, or if they qualify through a disability) pays for some of the most expensive prescription drugs, and attempts to imitate (irony alert) what President Trump blames other countries for doing: negotiating prices for their citizens, based largely upon the foreign prices themselves. A planned “international pricing index” (IPI), would cap certain Medicare Part B drug prices to an index from 16 otherRead More →

UACT is disappointed by the preliminary rejection of Yescarta by the UK’s National Institute for Health and Care Excellence (NICE) over its high price, for two reasons: 1) Gilead is asking too much for the treatment which is largely based upon the US National Institutes of Health (NIH owned inventions, and 2) the UK government has not given any public indication it is considering alternatives to withholding coverage to address the problem of an excessive price. Yescarta is the Gilead trade name for axicabtagene ciloleucel, a CD19-directed chimeric antigen receptor T-cell (CAR T) technology invented by the NIH, licensed to Kite/Gilead and approved by theRead More →