News from Tuesday, July 1, 2025
Articles
Parliamentarian Reverses Course on Rare Disease Drug Price Provision in Tax Bill
(6/30, Gabrielle M. Etzel, The Washington Examiner) reports “...The National Pharmaceutical Council recently published an analysis that found that, following the IRA’s passage in 2022, the percentage of drugs under the orphan designation approved to treat another disease fell from 12.1% to just 6.3%. In addition to exempting new drugs that treat multiple rare diseases, the bill also delays the timeline for when the drugs would be open to negotiations, if approved to treat non-rare diseases.” Full
Rob Abbott, ISPOR’s CEO, Wants to Move the Needle on Health Care
(6/30, Ron Southwick, Chief Healthcare Executive) reports “...[Rob Abbott, CEO of ISPOR] sees this as a vital moment for ISPOR. In a recent interview, he talked about the importance of focusing on patients, identifying value, and the need for real-world evidence in examining treatments...In examining the benefits of drugs and treatments, Abbott repeatedly points to the need for ‘real-world evidence,’ which he says is becoming utilized more in decision-making. In ISPOR’s biennial report on the top trends of health economics, real-world evidence topped the list.” Full
Stanford Taps AI to Shrink Evidence Turnaround Time
(7/1, Naomi Diaz, Becker’s Health IT) reports “Stanford Health Care has launched a pilot program combining ambient AI and real-world data to give physicians clinical evidence within minutes during patient visits...The goal is to generate relevant evidence-based reports in under five minutes—without interrupting the clinical encounter.” Full
Rare Diseases: Once Lightning Strikes, Now Lightning Storms
(7/1, Denise Myshko, Managed Healthcare Executive) reports “...Respondents to the Alnylam survey indicated that value- and outcomes-based contracts are among the innovative ways to manage the ballooning cost of drugs for rare diseases. But outcomes-based agreements are difficult to execute, said Jeffrey Dunn, president of the Cooperative Benefits Group and another panelist at the Asembia session...Value-based agreements, on the other hand, Dunn said, are more likely to rely on claim data to assess outcomes relative to costs.” Full
Press Releases
NICE Welcomes the Inclusion of Measures for Equal Treatment of Medicines and Health Technologies
(7/1, NICE Press Release) ...The new approach will ensure that high-impact devices, diagnostics and digital tools recommended by NICE, that meet the most urgent needs, are nationally reimbursed and made available across the NHS - just like medicines.” Full