Update on New Clinical Trial Issue

On Friday, July 29, 2022, Elliot Lukacik and myself from SAMPS, Lorelei Dalrymple and Michael Chibuk from MASS and Dr. Nizar Bahlis met with Dr. Dean Ruether, Brenda Hubley and Debbie Pinter from AHS to voice our very serious concerns about the impact of the recent AHS decision to shut-down or postpone new clinical trials.

After a presentation by myself and Dr. Bahlis, Dr. Reuther indicated that there was some confusion around this issue, and that AHS had never intended to stop new clinical trials. Rather, what we will probably see is a delay in input while AHS staff becomes familiar with the new EPIC EMR system. There was no indication of what that delay might look like - it really is impossible to estimate something like that. However, AHS is still accruing patients to clinical trials, and will continue to accept new clinical trials.

We were assured that AHS will be working closely with our oncologists to ensure that the needs of our patients are met.

They invited us to follow up with them in a few weeks, which we definitely will. SAMPS and MASS will be working with our oncologists to ensure that we are getting the trials and treatments requested. Dr. Ruether also indicated that if we hear of any patient who is experiencing an unreasonable delay, we should contact them. That means that if any of YOU (or someone you know) feels your case is in jeopardy, you should contact either myself (here in Calgary) or Lorelei Dalrymple (in Edmonton) at president@samps.ca or info@multiplemyeloma.ca.

From our perspective, this is a positive outcome for what appeared to be a very dire situation, and we appreciate that AHS officials took the time to meet with us.

Bev Dunn
SAMPS President