00:55:41 Roz Scourse: First roundtable recording: https://msfaccess.org/roundtable-series-how-can-disclosing-clinical-trial-costs-increase-access-medical-products 00:55:50 Roz Scourse: And report: https://msfaccess.org/roundtable-how-can-disclosing-clinical-trial-costs-increase-access-medical-products 01:00:41 Christopher Morten: Here’s a link to the report: Ariella Barel & Laurel Boman, Clinical Trial Cost Transparency at the NIH: Law and Policy Recommendations, NYU Engelberg Center on Innovation Law & Policy (Christopher Morten, ed., August 2020). https://www.law.nyu.edu/sites/default/files/Clinical_Trial_Cost_Transparency_at_the_NIH-Law_and_Policy_Recommendations.pdf 01:10:42 Rachel Cohen, DNDi (she/her): If you want to include the DNDi published costs, please feel free to add to the chat this report (pp 17-20): https://dndi.org/wp-content/uploads/2019/10/DNDi_ModelPaper_2019.pdf 01:13:19 Patrick Durisch: Public Eye has estimated the R&D costs and profit margins for 6 cancer treatments, starting from the clinical trial costs. Our report (incl. a detailed methodology) is available here: https://www.publiceye.ch/fileadmin/doc/Medikamente/2022_PublicEye_ProperlyUnhealthy_Report.pdf 01:30:03 Roz Scourse: Here is more information about the MSF Clinical Trial Transparency Policy that Bern just announced: https://msfaccess.org/msf-publishes-first-clinical-trial-transparency-policy 01:38:28 Wilbert Bannenberg: Our Pharmaceutical Accountability Foundation checked how 26 manufacturers of 30 Covid-19 vaccines or therapeutics adhered to their human rights responsibilities. Disclosure of CT results was one criterium that all passed (as it is a legal obligation) but on transparency of R&D costs most failed: See https://fairpharmascorecard.org 01:38:44 Francisco Viegas: Question to Sir Rory - Is there interest to include Clinical Trial cost transparency in the good clinical trial initiative (https://www.goodtrials.org/)? 01:49:39 Christopher Morten: For those interested, here is a press release on the proposed U.S. legislation, the Pharmaceutical Research Transparency Act. https://oversight.house.gov/news/press-releases/maloney-stabenow-and-smith-lead-colleagues-in-introducing-bicameral-package-of 01:50:07 Christopher Morten: And here is an op-ed endorsing the legislation: Ava Alkon, Christopher Morten & Reshma Ramachandran, Are high-cost prescription drugs the price of innovation? Disclose the costs of clinical trials, The Hill (Apr. 21, 2022). https://thehill.com/blogs/congress-blog/3275906-are-high-cost-prescription-drugs-the-price-of-innovation-disclose-the-costs-of-clinical-trials/ 01:57:42 Steve Knievel: One more note on the Pharmaceutical Research and Transparency Act: It was one of the bills introduced in the wake of a multi-year investigation into drug pricing conducted by the U.S. House Oversight Committee. The report noted: Research and manufacturing costs do not justify price increases. The Committee’s investigation found that companies’ investments in R&D are far outpaced by revenue gains. The investigation also found that even if the pharmaceutical industry collected less revenue due to pricing reforms, drug companies could maintain or even exceed their current R&D expenditures if they reduced spending on stock buybacks and dividends. From 2016 to 2020, the 14 leading drug companies spent $577 billion on stock buybacks and dividends—$56 billion more than they spent on R&D over the same period. In addition, companies dedicated a significant portion of their R&D expenditures to research intended to extend market monopolies, support the companies’ marketing strategies, and suppress competition. 01:58:26 Steve Knievel: https://oversight.house.gov/news/press-releases/chairwoman-maloney-releases-comprehensive-staff-report-culminating-the-committee 01:59:30 Kristina Wallengren: Thank you so much for putting cost-transparency on the table! It will help the entire ecosystem of R&D including implementors, funders and patients. My guess is that all stakeholders feel as if they have pulled the shortest stick. A better understanding of the holistic and disaggregated costs would improve an equitable distribution of cost and risk. As clinical trial implementor (non-profit NGO), I would be delighted to participate in furthering this understanding and advocacy. Kristina Wallengren, CEO, THINK South Africa 01:59:37 Peter van Heusden: When the recording is shared, please try and include this chat - so many excellent points. 02:01:28 Roz Scourse: Yes, Peter - agree! We will 02:01:36 Alexandra Griessbach: Agreed! 02:04:38 Francisco Viegas: If Clinical Trial funders, particularly public and philanthropic, require it from their grantees the issue of "forum shopping" of jurisdictions that don´t require transparency it wouldn´t be so much of an issue. 02:12:31 Mohga Kamal-Yanni: Thank you for this webinar 02:14:38 Alexandra Griessbach: This is the best webinar I have visited this year. 02:14:56 Peter van Heusden: I know you asked about TB communities but I think - from the previous webinar and this one - that your question opens a powerful framing that expands the conversation beyond specialist advocates to a much larger public 02:21:36 Kate Stegeman: We need to get participants in the trials to advocate for this radical call for transparency, too 02:21:58 Christopher Morten: One more thing I’d like to add to the chat before the meeting closes: A letter from many different patient and civil society groups in support of US trial cost transparency legislation, including MSF, Public Citizen, and DNDi https://publicinterestnetwork.org/wp-content/uploads/2022/05/Joint-letter-to-Congress-supporting-Pharmaceutical-Research-Transparency-Act-June-2022.pdf 02:22:33 Francisco Viegas: Excellent point Fatima. the issue of access and benefit sharing will also be quite central to be picked up to balance the inequity you´ve highlighted 02:22:45 Adam Strobeyko: Thank you for this webinar 02:22:53 Roz Scourse: Thank you so much to Rachel and all the speakers for such a brilliant discussion today! 02:23:14 Alexandra Griessbach: 👏🏽 02:23:16 Victorine de Milliano: Thanks everyone! 02:23:20 Seynedhee Avenie: Thank you all! (Thank you for answering my question on driving out the industry) 02:23:22 Fatima Hassan: Thanks Rachel and MSF 02:23:23 Marlise Richter: 🦋 02:23:26 Emmanuel Mrimi: Thank you everyone! 02:23:42 Paresh Purohit: Thank you very much