ICAN's Patient Advocacy Representative to the FDA: Richard MacIntyre*
Richard McIntyre is a member of ICAN's National Board of Advisors and is a chronic lymphocytic leukemia patient with experience in cancer clinical trials. Given his involvement and passion about advocacy and expediting clinical trials pipeline for patients with blood cancers (and for patients with solid tumors), ICAN took great pride in nominating Richard to be an official patient representative at the Food and Drug Administration (FDA). Richard's posting at the FDA will revolve around drug approval issues or other areas of interest to the FDA's outreach efforts toward cancer patients. Please join us in welcoming the addition of Richard's blog about his experiences with the FDA and the important work this public agency does in the drug approvals arena:
On Friday September 2, 2005 at 5:00 pm PST, I received a diagnosis of Chronic Lymphocytic Leukemia. I was 45 years old with no genetic disposition for this disease and had less than 1% chance of ever being diagnosed with it. I had also just had a son and was afraid for his future as a CLL patient as I struggled with the myriad of emotions that come with a cancer diagnosis. I was otherwise healthy, happy and looking forward to a long life with a personal goal of living to see 100 years of age.
Since my diagnosis, I have been in 3 clinical trials under the direction of my outstanding doctor, Richard Furman; one trial I didn’t get to complete because of complications with my lymph nodes; one trial was unsuccessful in getting and meaningful results; and the third one has been a home run by all accounts. I still have my sights set on 100, and getting there seems to be a very real goal now.
I was led to advocacy through a series of events I will describe in my blog, and through advocacy with ICAN, I have become a patient representative for the FDA. My hope is that my experiences will help others make decisions based on the best information available and will also help patients and advocates more fully understand the FDA and how this vital agency functions to keep the public safe with its defined set of processes and regulations.
*Richard MacIntyre is a pseudonym to protect the privacy of the patient and the work of the FDA.
Post date: February 2, 2011
Sometimes, things are just as easy as they seem; sometimes the book is exactly what the cover makes it out to be. Generally, when this is the case, you don’t really discover this until after you’ve read the book and given it some thought and maybe even read the study guide. This has definitely been the case with me and my early experiences with the FDA as a patient representative. Read more...
Post date: September 1, 2011
My First ODAC (Oncologic Drug Advisory Committee)
While being a patient representative for the FDA is very rewarding, it can also be somewhat maddening. The runway to any real participation is long, and the waiting can be a tad frustrating; not because there is any expectation that you should be participating quickly, but because you want to. Read more...