We’re excited to be back for another episode of the Life Sciences Today Podcast by Healthcare IT Today. My guest today is Bonnie Anderson, Head of Humanitarian Programs, Rare Diseases at Sanofi. For more than 30 years, Sanofi’s Rare Humanitarian Program has provided free enzyme replacement therapy to patients with lysosomal storage disorders — Gaucher, Fabry, Pompe, ASMD, MPS I and II — in countries where no reimbursement pathway exists. What started in 1991 with a single drug for a single disease has grown to cover six diseases across 100+ countries, with more than 3,600 patients treated and over 1,000 patients active today. In this conversation we talk about what it actually takes to sustain patient access at this scale: how a physician in a country with no reimbursement initiates a request, how the program builds local diagnostic and treating capacity alongside the drug donation, and what changed in 2023 when Sanofi moved the review and approval workflow off spreadsheets and onto Bonterra’s grants management platform — cutting approval turnaround to under 36 hours. We also talk about what three decades of humanitarian access have taught Sanofi about running programs that outlast portfolio changes, M&A, and generational staff turnover. Check out the main topics of discussion for this episode of the Life Sciences Today podcast: For someone who has never heard of the program, paint the picture — who is the patient, what disease do they have, and what would happen to them without this? The program started in 1991 with Genzyme for Gaucher disease. What was the original decision inside Genzyme that created it, and does that still hold today? Walk me through what happens from the moment a treating physician in a country like India or Egypt identifies a patient they think might qualify, through to the first infusion. Where does the physician meet the program? The program is case-by-case, country-by-country. What does “case-by-case” actually mean in practice — what are the criteria, and what kinds of requests don’t get approved? How does the program think about long-term commitment to a patient across decades of pharma portfolio changes and M&A? One of the things that stood out in the Orphanet paper is that the program builds local clinical infrastructure — advisory boards, training, diagnostics — not just drug logistics. Why was that decision made early, and what does it look like in a country today? Thirty years in, what does the program look like? Is it still there? Has it wound down? Has it evolved into something else as local capacity matured? Before 2023, the review and approval workflow ran on email, spreadsheets, and PDFs. What did a bad week look like back then, and what was the moment you knew the manual process couldn’t scale? You moved to Bonterra’s grants management platform in 2023. Approval turnaround is now reportedly under 36 hours. What does that delta mean for a patient and their physician? A grants management platform wasn’t originally built for medical access programs — it’s CSR software. Why was that the right shape for this workflow, versus a purpose-built managed access platform? What do you think about the cyber and privacy architecture of a program that crosses that many borders? What is the biggest anti-pattern in your industry of humanitarian access? Subscribe to Danny’s newsletter to get strategic patterns for life science leaders building a defensible business. Be sure to subscribe to the Life Sciences Today Podcast on your favorite podcasting platform: Apple Podcasts Spotify iHeartRadio Amazon Music Pandora YouTube Along with the popular podcasting platforms above, you can Subscribe to Healthcare IT Today on YouTube. Plus, all of the audio and video versions will be made available to stream on Healthcare IT Today. As a former pharma-tech founder who bootstrapped to exit, I now help TechBio and digital health CEOs grow revenue—by solving the tech, team, and go-to-market problems that stall your progress. If you want a warrior by your side, connect with me on LinkedIn. If you work in Life Sciences IT, we’d love to hear where you agree and/or disagree with our takes on health IT innovation in life sciences. Feel free to share your thoughts and perspectives in the comments of this post, in the YouTube comments, or privately on our Contact Us page. Let us know what you think of the podcast and if you have any ideas for future episodes. Thanks so much for listening!
