Earlier this week Margo Michaels, MPH, Founder and Executive Director of the Education Network to Advance Cancer Clinical Trials (ENACCT) announced via email that the organization would be closing on March 31. This will be about 10 years since the formation of the organization with the stated aim of “addressing persistently low accrual rates in clinical trials by focusing on changing organizational practices and procedures, as well as the quality of community engagement around cancer research.”
The closing, she said, follows “months of ongoing funding challenges and financial constraints.” The webinars and current programs will continue through March, she said, and she will then become volunteer President of the Board of Directors through 2015.
She said ENACCT will continue offering free public access to its products and tools through the website (enacct.org), and is also exploring the “adoption” of these products and tools by other organizations.
In 2005, I wrote about the birth of ENACCT thanks to seed money provided by the then-Lance Armstrong Foundation (LAF, now Livestrong), and called Michaels for more information about its demise.
In an interview, she noted that when that article was published Lance Armstrong had autographed a copy, had it framed, and sent it to her as a gift that had adorned her wall all these years.
The LAF support had been initially championed by Andy Miller, who was the foundation’s Associate Director of Public Health when I interviewed him for the 2005 article; he also served as a member of ENACCT’s board until leaving LAF a few years ago.
Michaels said she informed ENACCT’s board in July that she would be resigning in early 2014 and the board then decided to close the organization as well. “This was my life’s work and passion, but it was getting increasingly difficult to raise the funds to sustain it,” she said, adding that with many grants and projects lasting no longer than a year it was not always feasible to do any long-term organizational planning when living hand to mouth.
Acknowledging that the task of fundraising was an important part of heading a nonprofit organization, she said the role had become overwhelming and left her with less and less time to focus on planning, projects, and programs.
Prior to establishing ENACCT she was Branch Chief of Survivor and Public Education for the National Cancer Institute in what had formerly been the Office of Education and Special Initiatives before several reorganizations.
At NCI and before that at the National Breast Cancer Coalition and Susan G. Komen, she developed educational programs about policy and scientific issues related to cancer clinical trials for advocates, community leaders, and health care professionals.
One of her goals for ENACCT, she said, had been to increase educational resources about trials for local communities, with outreach to patients and the public as well as oncologists and primary care providers.
“We wanted to make clinical trials more accessible and approachable to more people and with better operational efficiency, and to improve how physicians communicate information about clinical trials,” she said, noting the often-quoted statistic that 30 percent of oncologists accrue 70 percent of all patients to cancer clinical trials, meaning that patients seeing the 70 percent of oncologists not involved in recruiting may not even be aware of the option of clinical trials, which only enroll about three percent of adult patients: “What’s needed is better communication about trials and more meaningful community engagement.”
She said that in general industry funding has been in decline, and that in the past if she approached 10 pharmaceutical companies for modest grants for a project, she could expect to get five or six of them to sign on. “In one case, only one of 10 companies agreed to fund a $10,000 grant, and since we couldn’t raise enough money for the project we had to return the money,” she said.
Since announcing the organization’s future shutdown Michaels said that she’s heard from a number of people including two members of the American Society of Clinical Oncology’s Board who told her “this was a terrible day for clinical trials.”
In the meantime, she’s hoping to stretch the organization’s dollars to support staff through early next year before she assumes her voluntary role and starts looking for a salaried day job.