When availability of the pennies-per-pill drug colchicine was threatened by the branded drug Colcrys—at $5 a pill—Fairfield, Ohio–based rheumatologist Edward B. Herzig, MD, posted the news on the ACR advocacy list serve. The result? Outrage among his fellow rheumatologists and immediate action by ACR leadership, which approached the U.S. Food and Drug Administration about the issue and the impact it would have on patients with gout and familial Mediterranean fever who depended on the drug. The ACR leadership also worked with the drug’s manufacturer, URL Pharma, to provide wider coverage through the Colcrys patient assistance program.
Such is the power of a virtual community. The advocacy list serve is the most active of more than a dozen list serve communities the ACR maintains. Although it was originally developed to share ideas about advocating for issues that concern rheumatology and rheumatologists, the list serve has expanded over time, says Dr. Herzig. Today it includes discussions on a wide range of topics including electronic health records, access to treatments and medications available to patients, the politics of medicine, practice issues, the cost of drugs, and, sometimes, the philosophy of life and practice.
Sometimes the group is silent for a while, says Max Hamburger, MD, who practices in Melville, N.Y., “but then someone raises an issue, and we address it intensively.” Reading what others have to say about issues is of great value, he says. “I become aware of issues I might not have known about or overlooked and instead of my own myopic thinking, I get to see what others think. With the speed of the interaction, we all get to teach one another and learn from one another.”
List Serve Etiquette
- Have your name, affiliation, and location on e-mails that you send.
- Include a specific and concise subject line for each e-mail. This will allow others to quickly delete e-mails that they feel are not relevant.
- Make sure your response is listed at the top of the original e-mail when replying.
- Send a personal message to the individual sender if the e-mail will only relate to the original sender. This includes such messages as “thanks” and “send the information to me, too.”
- Allow everyone to express their concerns in a friendly manner. Do not be overly contentious.
- Send all messages relating directly to the functioning of the list to the list administrator. This includes messages such as “remove me from the list” or “change my e-mail address on the list.”
- Try to keep the length of the e-mail to a minimum or warn recipients in the subject line that the body will be long by including the words, “Long Message.”
- Temporarily unsubscribe from the list if you are planning to use an automated reply, such as “out of office” for the time period the automated reply will be enabled.
The sense of community the list serve provides is invaluable, note several list serve members. “Rheumatology is a fairly small fraternity,” says Chris Morris, MD, of Arthritis Associates in Kingsport, Tenn. “I have seen the list serve help us get to know each other better, so when we arrive at the annual meeting we can immediately recognize colleagues with whom we have shared discussions online.” It also provides important support, he says.
I become aware of issues I might not have known about or overlooked … . With the speed of the interaction, we all get to teach one another and learn from one another.
—Max Hamburger, MD