July 12, 2020

The Niche

Knoepfler lab stem cell blog

Interview with CAMR President & PAN CEO, Amy Comstock Rick

As many of you know, the Coalition for the Advancement of Medical Research (CAMR) announced today that it will dissolve as an organization.

I both emailed and talked on the phone with the President of CAMR, Amy Rick (who by the way is also CEO of the Parkinson’s Action Network (PAN)). Below is a concise summary of our interview.Amy Comstock Rick

1. Why now? There are still battles to be fought and CAMR has been so important.  For example the human therapeutic cloning paper has already drawn calls for new legislation against SCNT.

The timing of this decision has nothing to do with the recent SCNT announcement but rather with the general direction of the science and the regulatory issues since the NIH Guidelines were finalized three years ago.  The CAMR Board has been analyzing this issue for months and came to the decision to transfer its mission during the course of this spring.  As I said in the email, the relevant policy issues now go well beyond what has traditionally been CAMR’s focus involving the FDA and CMS, and ARM is already doing an outstanding job advocating in those areas. 

We asked ourselves, ‘ is it really smart to keep it going just in case issues related to hESC research funding arise again?’ and decided it was not wise stewardship.

2. Are you confident that ARM will specifically support hESC research in the future as part of its mission?

We have no doubt that ARM will be just as strong an advocate for federal research funding issues and we hope that many of CAMR’s members will be involved with ARM.  We have consulted with many people interested these issues and there is strong support for this transition. ARM has committed to hESC research and basic research funding.

 3. What about the role of patients and patient advocates? Will they have a role in ARM moving forward after CAMR?

Yes, while ARM has historically not had as broad a representation of patient advocates as ARM, I expect a substantial role for patients in ARM. In fact, some organizations such as PAN are already part of ARM.

4. What can we expect moving forward?

One of the most important points is that when it comes to CAMR, the people are not going away. I expect many to be involved in ARM. As we were considering this change, our focus was on what would be the best way moving forward and I believe this change reflects that and the emphasis on translating therapies.