Narrowing the Gap: Putting a Face on Sickle Cell Pain
The biggest problem that patients with sickle cell disease face may not be the excruciating pain from this challenging genetic blood disorder, but the lack of understanding they get when they arrive in the emergency room with pain rating a “ten” on a scale of zero to ten. Patients with sickle cell often face physicians who do not truly understand their disease or their pain, and worse, these patients are often labeled “drug seekers” looking for their next high. These patients don’t appear to be a “ten” on the pain scale. What most emergency room physicians don’t know is that after years of living with one of the most painful and misunderstood diseases, these patients’ pain is masked – they are so used to the pain that they don’t respond to it the way the average person might. Pain physician Bill Zempsky knows that the key to better treatment is narrowing the gap in perception between patient and physician.
“If you change this perspective, I think the care will change,” the Mayday fellow said.
Since the Mayday Pain & Society Workshop, Zempsky has begun writing a commentary about the injustices of the treatment of sickle cell patients. He published a commentary in the Journal of the American Medical Association (JAMA). He has also published letters to the editor addressing issues of chronic pain in newspapers including the New Britain Herald and the Hartford Courant.
“Those are things I probably wouldn’t have done if it weren’t for this training,” he said. “I’ll continue to do this kind of stuff because it’s much more in my consciousness. Advocacy will play a much greater role in my career than it has in the past.”
Zempsky said the training taught him to advocate in other areas like government and “how to move your agenda forward and get people to notice you.” Prior to the Mayday training, Zempsky said he had some media experience but felt uncomfortable in these other arenas.
By working proactively with the media, Zempsky has been able to spread his message beyond the pain community. He sees the media as a viable partner and is not afraid to make a statement about specific controversial issues. He is now constantly aware of his audience; it’s important for the public to read his commentaries, but he also knows that he must target physicians in order to change their minds.
He also successfully organized a symposium where he brought together people with Sickle Cell disease and emergency physicians, two groups that do not often collaborate. He said the meeting was valuable for both sides and sickle cell treatment initiatives have since grown out of it. Currently, Zempsky is leading a group which is developing guidelines to disseminate to all hospitals in Connecticut. This initiative has been supported by the Connecticut Department of Public Health.
“It’s an example of working across groups,”” he said. “We’re bringing stakeholders together to get something we can all agree upon, which is not something I would have felt comfortable with before the Mayday training.”
Bill Zempsky, MD, is a 2008-09 Mayday fellow. He is a professor of Pediatrics at the University of Connecticut School of Medicine and Associate Director of the Pain Relief Program at Connecticut Children’s Medical Center.