Ellen Stovall should be in the cancer activist hall of fame. I never met her; never even heard of her. But lengthy obits in the New York Times and USA Today was my first hint how special she was.
Friend and fellow activist, Greg Brozeit, wrote a heartfelt post about Ellen and asked me to run it. She sounds like an amazing woman:
Ellen Stovall: More Than a Cancer Survivor
You’ve probably never heard of Ellen Stovall unless you’re a cancer policy wonk or passionate about the concept of cancer survivorship. But if you care about cancer issues like medical research funding, drug approval, access to therapies, psycho-social support, employment rights, and palliative care, Ellen played an important part in your life.
Ellen passed away last Tuesday, 45 years after she was diagnosed with lymphoma. According to the New York Times, she had been diagnosed with three types of cancer during her lifetime and succumbed “complications of cardiac disease associated with her early cancer treatment.”
As long time director and chair of the National Coalition on Cancer Survivorship, Ellen was among the most instrumental people in the history of cancer advocacy. I first met Ellen in August 1998 at the largest political gathering of cancer patients in history, The March: Coming Together to Conquer Cancer.
More than 100,000 advocates representing every cancer type filled the National Mall for a rally and then scoured the halls of Congress to lobby for a pipe dream to double funding for the National Institutes of Health over the next five years. That mirage became reality in 2003.
Over the next seven years I would see Ellen often as she chaired regular meetings of the Cancer Leadership Council, a coalition of cancer organizations monitoring every policy in Washington that had anything to do with cancer. Cancer patients generally didn’t pay a lot of attention to minutiae that obsessed Ellen, but it was important to their lives.
For example, the myeloma community cheered the unprecedented approval of three new drugs just weeks before the beginning of last month’s ASH meeting. ASH even scheduled a major session at the last minute featuring the staff members of the Food & Drug Administration who took the lead on each approval together with Drs. Richardson and Rajkumar.
Ellen’s fingerprints were all over the process that led to those approvals—expediting reviews, defining effective standards, streamlining policies and rules that used to bog down acceptance of clinical trial data and that governed collaboration between regulators, academia and industry.
For that reason alone, all of us in the myeloma community should take a moment to reflect on Ellen’s gifted passion to do everything she could to make sure that all cancer patients did not become victims. She toiled in humble anonymity to clear obstacles most patients didn’t even know existed.
Ellen became an advocate during a time when most people didn’t speak openly about being diagnosed with cancer. Her instincts told her this was wrong and she set out to do something about it.
All of her work can be summed up in one cause: to make policies that affected cancer patients—really all patients, regardless of disease—among the highest priorities of our elected officials.
Ellen didn’t just elevate the term survivor; she embodied it every day of her life.
An example of how ordinary people can do extraordinary things. Ellen, thanks for all you did for us.
Feel good and keep smiling! Pat