Robin Tuohy's testimony at CEPAC on Treatment Options for Relapsed and Refractory Myeloma.
On May 26, 2016, the International Myeloma Foundation’s Senior Director of Support Groups and spouse of Michael Tuohy, a sixteen-year myeloma survivor, testified at the Comparative Effectiveness Public Advisory Council’s Public Meeting (CEPAC) on Treatment Options for Relapsed and Refractory Myeloma. In her compelling testimony, Robin shared how her husband Michael’s survival as a myeloma patient may not have been possible without access to a clinical trial, an [and] oral therapy regimen, he has been on for the past eleven years. She pointed out, “Today we are able to treat myeloma in sequence and in combination that reflects our individual disease markers, chromosomal abnormalities, and yes, even side-effect management and quality of life choices. I’ll say that again: choices!” She urged the Institute of Clinical and Economic Review (ICER), that while their recent report was “well-intended,” when it comes to patient care, “This is a very slippery slope that should not give anyone leverage to limit or deny access to treatment.”