Donah Zack Crawford, MA, was a research coordinator at the University of Pennsylvania, focused on premenstrual syndrome and perimenopause, when her symptoms first started. “Someone suggested I see a rheumatologist,” she says, and not long after, Philadelphia-based physician Bruce Hoffman, MD, diagnosed her with rheumatoid arthritis.
Explore this issueNovember 2018
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It was the mid-1990s, and treatment options were limited. “I couldn’t go to work. I could hardly move,” says Ms. Crawford. “When I first got sick, I couldn’t do anything. I was walking around like a little old lady, but I had little kids.”
With time, her symptoms eased, and recognizing her passion for research, Dr. Hoffman suggested she get involved in a clinical study he was just getting started. Ms. Crawford quickly realized she was not eligible to be a participant; Dr. Hoffman asked if she would, instead, like to coordinate it.
That was 20 years ago, and today, Ms. Crawford is director of clinical trials at Arthritis Group PC, in Philadelphia, with Dr. Hoffman, James Udell, MD, and four other physicians. At any given time, she oversees 11 to 14 studies.
Introduction to the ACR/ARHP
Ms. Crawford has helped the practice grow, and she credits her success to the assistance of and services provided by the ACR and the ARHP. “The ARHP and ACR built our practice,” she says.
The ACR Annual Meeting took place in Philadelphia at the same time Ms. Crawford was getting started at the Arthritis Group (before the ACR and ARHP meetings were fully integrated), and Dr. Udell gave her a day pass. “He said, ‘Come with me,’ and he showed me around and said, ‘This is what’s happening; you should know about this stuff,” Ms. Crawford recalls.
He led her to the exhibit hall, where she handed out business cards and talked about the research side of the practice, including a new trial that was enrolling patients.
“Dr. Hoffman had three people in that one study, and Dr. Udell added 26 more,” Ms. Crawford says. “That’s how we got all of our additional studies, because of connections to all these people at the meeting.”
Helping facilitate research is her passion, and helping recruit patients into clinical trials is one of the most important things she’s ever done in her life, Ms. Crawford says. She has seen these trials lead to approval of therapies for rheumatology patients, and she never ceases to appreciate the contributions of patients willing to take part.
“I tell them: ‘You guys change the way medicine is practiced because of your willingness to be in a study,’” Ms. Crawford says. She reminds them that their contributions also trickle down to their children and grandchildren.
With a background in gerontology, Ms. Crawford never anticipated that a medical diagnosis would lead her down a career path in rheumatology research, but it’s one that has brought her immense satisfaction.
Volunteerism & Advocacy
As a long-time member of the ARHP, Ms. Crawford has been an active volunteer in several capacities, serving on the Education, Research and Ethics committees, as well as on the Annual Meeting Planning Committee. She is a regular presenter at the ACR/ARHP Annual Meeting, and this year she gave a talk about getting a research practice started.
Her latest endeavor is to serve as the ARHP representative to RheumPAC, the ACR’s nonpartisan political action committee, which works on behalf of rheumatology practitioners and their patients. She just recently waded into the advocacy realm, visiting Pennsylvania’s capitol, Harrisburg, with the Arthritis Foundation and participating in several Capitol Hill days in Washington, D.C., with the ACR/ARHP.
Her interest in advocacy was born of the same appreciation she has for patients who make clinical trials possible. As residents of Philadelphia, one of the first industrial cities in America, many of the patients Arthritis Group enrolls are “blue collar people in working class neighborhoods,” Ms. Crawford says. “These people are changing the world, and these same people can’t get the drugs they helped get approved.”
Because of politics and prior authorization policies, complicated insurance issues and out-of-reach copays, many of these patients cannot access the “life-changing” biologics that have transformed what it means to receive a diagnosis of rheumatic disease, says Ms. Crawford. “And now [politicians are] talking about pre-existing conditions again, and this makes me crazy, because we have the tools, and we need to give them to people.”
The advocacy work has been meaningful, exciting and enlightening, she says.
When Crawford is not at work, she is fulfilling another one of her passions: living history. As a costumed actor, “I teach 18th-century medical programs at schools and museums and parks,” says Ms. Crawford, noting that she has a “huge collection of 18th-century medical artifacts and books.” (Editor’s note: The Rheumatologist profiled Ms. Crawford’s outside interests in Rheum After 5 in January 2015.)
Her hobby gives her access to interesting historical stories, especially because she spends time poring through the earliest records at Pennsylvania Hospital, which was founded in 1751 by Ben Franklin and Dr. Thomas Ward.
Each of her children has also joined her as a living historian at various points along the way. In fact, her younger son is “a private in the 17th Regiment of Foot, His Majesty,” Ms. Crawford says, and her daughter, who lives in London, will occasionally accompany her to a ball.
At 65, Ms. Crawford has no immediate plans to retire from her research role, although she knows retirement is on the horizon. With a background in gerontology, she also never anticipated a medical diagnosis would lead her down a career path in rheumatology research, but it’s one that has brought her immense satisfaction.
“I love what I do,” she says. “It’s one part science, one part sales, one part stand-up comedy.”
Kelly April Tyrrell writes about health, science and health policy. She lives in Madison, Wis.