N. Lawrence Edwards, MD, was watching the Philadelphia 76ers vie for a post-season win on television when he noticed coach and former National Basketball League player Maurice Cheeks hobbling down the sidelines from an attack of gout.
N. Lawrence Edwards
“One of the ESPN commentators commented that his gout was back, and they were just kind of chuckling about it up in the booth,” Edwards, chairman of the Gout and Uric Acid Education Society (GUAES), told Healio Rheumatology. “So, I contacted Maurice Cheeks and said, ‘These people were laughing at your pain. What do you think about that?’”
Cheeks didn’t like it and, with a bit of cajoling, he was convinced to become a spokesperson for the Gout and Uric Acid Education Society, which was founded by Edwards and H. Ralph Schumacher Jr., MD. Edwards said the insensitivity and lack of knowledge displayed in this incident was typical of the public perceptions of gout and is part of what the Gout and Uric Acid Education Society was formed to combat.
“Gout isn’t taken seriously,” Edwards said. “It isn’t funny and it isn’t self-inflicted. It’s a genetic metabolic condition and it has the same destructive potential, the same possibility of significant functional limitations, as rheumatoid arthritis.”
Need for education
The idea for the GUAES came into being approximately 12 years ago, when Edwards and Schumacher, an internationally known expert in gout, became frustrated by the lack of education, resources and overall respect for the condition.
“Gout had long been an undertreated and poorly treated disease and didn’t have a lot of respect,” Edwards said. “Part of that just had to do with the fact that there were no great educational efforts directed at it. Although Dr. Schumacher and myself were busy writing book chapters about it, there wasn’t much of a focus on it in general.”
Edwards said the lack of educational initiatives may have been partly due to the fact that since the introduction of allopurinol in the 1960s, no new gout medications had entered the market, leading to a lack of excitement and publicity.
However, he noted that some promising new medications, like febuxostat, were entering the pipeline in the early 2000s. These lead to some educational activity. However, Edwards said, this education was limited and largely directed at physicians.
“Dr. Schumacher and I had been engaged in this for a couple of years, and we were beginning to get a little frustrated that we were talking our hearts out about the importance of recognizing gout, and we really didn’t feel like we were moving the needle much through that approach,” he said.
They decided to utilize a platform with seemingly unlimited reach — the internet.
“We thought if we could get the information out there to the patients, then they would read it and go into their own doctors and demand better care,” he said. “If they came in with information from a website with documented literature, guidelines and suggestions on controlling uric acid, this would also be an indirect way of educating more physicians.”
While the internet did not lack patient information about gout at that time, this information was largely non-scientific and unproven. “I remember initially, when we thought about putting up our website for the GUAES, the first three pages’ worth of Google searches had to do with cherry juice concentrate and any number of other unproven remedies,” Edwards said. “We thought that having a scientifically based website that was not influenced by the pharmaceutical industry would be the best approach.”
Schumacher and Edwards also assembled a team of gout experts in various specialties, including nephrologists, cardiologists and rheumatologists. The group created not only a web-based educational process, but also patient education materials for clinicians to give out in their offices.
A comprehensive website
The resulting website, www.gouteducation.org, features general information about gout, including symptoms, stages, risk factors and triggers, as well as details about the latest treatment and lifestyle interventions for the condition. Visitors to the website can test their knowledge of gout through a 10-item quiz, and a downloadable Gout Kit with various resources is available. The site also provides information about resources, such as support groups and clinical trials. A series of “gout cartoons” by cartoonist Shaun Boland takes advantage of the humorous perceptions of gout to provide accurate information.
A key section of the website is devoted to the GUAES’ Go for Six Campaign, which informs patients about a healthy serum uric acid (sUA) level and sets a benchmark sUA of 6.0 mg/dL or less. Along with having UA levels tested regularly, patients are encouraged to take measures to bring down their levels. These include adhering to all prescribed medications, staying hydrated, avoiding “trigger” foods, controlling other health problems and making healthy lifestyle choices. For this campaign, the GUAES partnered with another professional sports figure, Anthony “Spice” Adams, a retired player for the San Francisco 49ers and the Chicago Bears. Adams was diagnosed with gout at 29 years of age. Edwards said athletes like Adams and Cheeks help illustrate the point gout can occur in patients who are young and physically fit, and is not caused by overindulgence.
“Gout is often linked to excessive drinking or excessive eating. That’s been the wrapping that gout has always been presented in and it’s simply not true,” Edwards said. “We’re trying to get the message out that this isn’t a self-inflicted disease.”
Another key initiative of the GUAES is National Gout Awareness Day, which occurs annually on May 22. On this day, the GUAES increases its efforts to inform the public about what gout is, its prevalence in the United States and ways of diagnosing, monitoring and treating gout. Edwards said that although the society has made significant progress in raising awareness, there is still much work to be done. For example, he said, many people are still unaware that with more than 8 million people with the condition in the United States, gout is by far the most common inflammatory form of arthritis.
“If you watch TV, you see the advertisements for rheumatoid arthritis and psoriatic arthritis medications. Phil Mickelson has that and is their spokesperson,” Edwards said. “Numbers-wise, those are relatively minor forms of arthritis. For example, rheumatoid arthritis probably affects about 1% of the population, while gout affects 4% of the population. If you add up all the other types of inflammatory arthritis, they wouldn’t quite equal the prevalence of gout.”
Another important, but relatively unknown, aspect of gout is its destructive and disabling potential, which is as significant as that of conditions like rheumatoid arthritis.
“The timeframe is a little more drawn out than with rheumatoid arthritis, and the symptoms aren’t as constant early on, but over time, they will become that way,” Edwards said. “And just like with rheumatoid arthritis, there is a window of opportunity for treating gout where you can alleviate the intermittent pains and prevent them from progressing to a chronic, disabling condition.”
Edwards said this window of opportunity is all too often missed by primary care providers, who currently are the clinicians who most commonly treat it.
“Primary care physicians are busy people — they have lots of things on their plates,” he said. “If a patient periodically comes in complaining of 5 [days], 6 days of excruciating pain but is up and around and doing okay by the time he gets to the doctor’s office, the physician often decides not to worry about that. Over time, though, the attacks get more frequent and destructive until finally it becomes a chronic disease process.”
The websites for the GUAES and Gout Awareness Day have made strides in clearing up some of the common misconceptions about gout. Additionally, the GUAES is an annual presence at the American College of Rheumatology, American Academy of Family Practitioners and the American Association of Nurse Practitioners annual meetings.
“Having a presence at the meetings and having our information available to them has been helpful,” Edwards said. “I think all of this is slowly moving the needle so that people are aware of our big campaigns and our message.” – by Jennifer Byrne
For more information:
N. Lawrence Edwards, MD, can be reached at The Gout & Uric Acid Education Society, 600 SW Archer Rd., Room 4102, Gainesville, FL 32610.
Disclosure: Edwards reports he is a consultant for Ironwood Pharmaceuticals and Horizon Pharma.