Thanks again for your interest in the Kasey Altman hackathon to find the best next treatment for this rare cancer patient. This is our weekly update (#11), especially for those who were unable to join us in person on Thursday (August 12).
We heard an update from Kasey, who was feeling well, despite being knocked down by her latest chemotherapy cycle, of which she has one more to go.
And we heard from Delsee, who shared that they are waiting for an update from Dr. Ezra Cohen on the process and timeline for Kasey’s personalized vaccine treatment. She also connected with Dr. John Maris of Children’s Hospital of Philadelphia about a possible test of the immune system that may increase the immunogenicity of patients with rhabdomyosarcoma.
We then continued our conversation on the process for turning Kasey’s potential treatment options into a prioritized short list of contingency plans B, C, and D. Delsee described her ideal vision of a discussion with (a) 4-5 clinicians, (b) Elena Brin to represent the biomedical research point-of-view, and (c) a patient advocate, such as Grace Cordovano. We talked about the concerns that clinicians may have in participating, such as liability, employer resistance, and giving medical advice in an open setting; and ways to overcome those concerns, such as a strong onboarding process for clinicians who agree to participate, a clear delineation of informal information sharing vs. a medical recommendation, and not recording the session.
We are developing a presentation to help introduce clinicians to Kasey’s case, the treatment options, and roles in the process of treatment prioritization. David Shalinsky, Tessa Marcus, Damon Reed, and Elena Brin have been contributing to the design, with a focus on delineating the roles of the hackathon (ideas and community), the prioritization board (information on how to think about priorities), and Kasey’s family and medical team (treatment decisions).
Please see the recording below for more details.
In Closing: Our Request
What advice do you have for the process which will prioritize Kasey’s best next treatment options (contingency plans B, C, and D)? If you have time, please see the draft in Slack and comment there.
Best,
Kasey Altman, Delsee Altman, Lupe Montes, and Brad Power