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.
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Explore This IssueMay 2011
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
“As rheumatologists, we need to do everything we can to stick together,” Dr. Morris stresses. “The sooner a problem is identified, the faster we can get to work on a solution. If I have some problem, chances are someone else has had it or will have it as well, so we can work together to resolve the problem.”
Pediatric rheumatologist Harry L. Gewanter, MD, who practices in Richmond, Va., compares the networking and camaraderie he experiences on the list serve to that he gets from attending the ACR’s annual meeting every year. As a solo practitioner, he relishes the opportunity to walk down a virtual hall and converse with colleagues about a thorny clinical issue or problem with an insurance company. He calls the other members of the list serve his “virtual partners.”
List Serve Rules
- Do not use any patient-identifiable information on the lists.
- Do not discuss monetary amounts of reimbursement for procedures or medications.
- Do not post commercial messages on the lists.
- Please be careful when discussing commercial products. E-mails posted to the lists are available to numerous individuals and are subject to libel and antitrust laws.
- Do not post any abusive, threatening, offensive, defamatory, profane, or illegal materials on the list.
- Do not post any copyrighted materials without the permission of the copyright owner. It will be assumed by the ACR that with any copyrighted material posted on the list that the posting party warrants and represents that he/she owns the copyright or has received permission from the copyright owner. Additionally, by posting such information on the lists, the posting party grants the ACR and other list members the nonexclusive right and license to display, copy, publish, transmit, print, and use such information or other material.
- Avoid any activity that could be construed as a violation of the antitrust laws. The ACR’s policy is to scrupulously comply with all antitrust laws and to prohibit any activity that facilitates price fixing, boycotts, or any other conduct intended to restrict free trade. Do not post any material that:
- References specific fees charged or paid for professional services;
- Discusses prices, discounts, terms, or conditions of sale with regard to medical services, suppliers, or other vendors, or terms and conditions of provider agreements relating to reimbursement levels, bonus payments, and other price or cost-related items;
- Addresses salaries or terms of employment;
- Attempts to allocate patient markets or encourage collective or coercive activity, including rejection or termination, with regard to third-party payors, hospitals, other healthcare providers, or suppliers; or
- Includes information that could otherwise be construed to impose a restraint on trade and inhibit free and fair competition.
- Do not post jokes, humorous stories, or “pass-around” e-mails.
- Do not post anything to the lists that you would not want everyone to see.
- Send messages only to the most appropriate list. Do not send the same message to several different lists unless it is relevant to the list.
- Do not post irrelevant or off-topic information to the list.
- Do not share content of the interchanges on the list serve nor the names and/or e-mail addresses of the participants with third parties (including employers).
The topics on the list serve are nothing if not diverse. In the past few months, postings ranged from a warning about a leflunomide shortage, before-and-after pictures of the disaster in Japan, difficulties finding generic Depo-Medrol injections, the disappearance of nonacetylated salicylates, and a lively discussion about electronic medical records. Several members shared their efforts to get Medicare coverage for intravenous ibandronate, and, in January, the colchicine issue reemerged with several physicians reporting that pharmacies refused to fill prescriptions written with the generic colchicine rather than the branded name.
So why not take the discussion to Facebook? Barry Waters, MD, of Coral Springs, Florida, thought the same thing at first, finding the list serve to be “awkward” to use compared with a discussion on a webpage or Facebook wall. Now, however, he appreciates the e-mail format, finding it particularly well suited for smart phones. His only disappointment with it? “I wish more people were active participants,” he says.
Debra Gordon is a medical journalist based in Virginia.
ACR List Serve Communities
ACR and ARHP members can sign up for one or all of the following list serves. Go to www.rheumatology.org/membership/lists to learn more and join.
- ACR advocacy
- Arizona state members
- California state members
- Colorado state members
- Connecticut Rheumatology Association
- Rheumatology Society of the District of Columbia
- Florida state members
- Georgia state members
- Idaho state members
- Maine state members
- Massachusetts and New Hampshire state members
- Michigan state members
- Mississippi affiliate list
- New York state members
- North Carolina state discussion list
- Ohio state members
- Oregon state members
- Pediatric rheumatology
- Pennsylvania state discussion list
- Rehabilitation discussion
- South Carolina discussion list
- Tennessee state members
- Texas state members
- Virginia state members
- Washington State List