Exploring ethical implications, value assessment, & reimbursement strategies for gene therapy. Funded by @ELSIhub. Co-led by @hadleyssmith & @Meghan_Halley
Joined March 2022
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We are excited to launch a new @ELSIhub-funded working group to explore patient-centered & ethically informed approaches to #value assessment & reimbursement of #GeneTherapy! We will share relevant research and info about our activities here. #EconGenomics
Value Ethics Working Group retweeted
#FDA Meeting 2: Patient and Care Partner Perspectives on Early Enrollment into Gene Therapy Clinical Trials for Rare Diseases fda.gov/news-events/meeting-…
Value Ethics Working Group retweeted
Jim Wilson to step down from gene therapy center at UPenn, will form two new companies - endpts.com/jim-wilson-to-ste…
Value Ethics Working Group retweeted
Sanofi sues Sarepta, alleging that Duchenne treatment Elevidys infringes on AAV patents - endpts.com/sanofi-sues-sarep…
Happening at 2pm today!
Join us for “Advances in Gene Therapy – 2024 Update,” a FREE webinar on July 16, 2-3 PM ET. Stay at the forefront of #genetherapy advancements w/presenters from @DukeMedSchool, @harvardmed, @CleClinicLCM & @UMassChan. Register: bit.ly/4cmsTzA #CRISPR #therapeutics
Value Ethics Working Group retweeted
If you are a scientist, clinician, economist, ethicist, patient/caregiver, etc. who wants to know more about HTA or reimbursement for gene therapies, this is a fantastic opportunity to hear from @tenHamR and @brootmcq, whose research is actively shaping policy. Join us!
Register for the next #ELSIFridayForum: Value and Values in Payment for Gene Therapies with @tenHamR @brootmcq and @hadleyssmith on May 12th at 12pm ET. ow.ly/Aurg50NKCQp
Value Ethics Working Group retweeted
@GenetxValue: $2.1 million price tag for Bluebird Bio’s gene therapy is cost-effective, analysis finds statnews.com/pharmalot/2022/… via @statnews
Value Ethics Working Group retweeted
While the promise of a 1-time treatment has prompted justifiable excitement, the upfront cost of these #gene therapies raises complex ethical & policy issues.
Hear from co-PIs @hadleyssmith & @Meghan_Halley about the new Value #Ethics CERA Working Group! elsihub.org/news/value-ethic…
Value Ethics Working Group retweeted
Please welcome our new CERA Working Group, "Value Ethics: Mapping Strategies for Value Assessment and Reimbursement of #Gene Therapies for Rare Disease," co-led by @hadleyssmith & @Meghan_Halley. Learn about the goals & members of the working group here: elsihub.org/working-group/20…
ALT Light blue background with lighter blue image of gears, one gear containing a dollar sign. Text on image in darker blues: Value Ethics working group: Ethics, value assessment, & reimbursement of gene therapy.
We have a website! Learn more about our working group's goals and view members here: elsihub.org/working-group/20…
Value Ethics Working Group retweeted
Our symposium on ethics, economics, and orphan diseases is happening tomorrow! Hope to see many of you there!
Our annual symposium "Emerging Therapies for Orphan Diseases: Ethics and Economics" is in 2 weeks! Hear how patient orgs, clinicians, INESSS, and health economists think about pricey meds & rare diseases. Sim. translation in fr/eng. More info/reg here: mcgill.ca/biomedicalethicsun…
Value Ethics Working Group retweeted
This is a much more readable & compelling version of the lecture I’ve been giving for the last 3+ years. If you work in drug development, please read it
"If we truly want to cure #sicklecelldisease, editing genomes will only get us so far. We’ll need to rewrite our medical system" #accesstocare must come first Thank you @NewYorker for elevating #SCD
Are We About to Cure Sickle-Cell Disease? newyorker.com/science/annals… via @NewYorker
Value Ethics Working Group retweeted
UCalgary researchers including @GEECSEcon & @UCSF_TRANSPERS collaborator Deborah Marshall lead international program to develop value framework on socioeconomic impact of living with rare disease news.ucalgary.ca/news/ucalga…