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It is my thesis that the symptoms of rheumatoid arthritis, it’s real impact on people, and the lack of a cure and highly effective treatments is not being accurately portrayed in various forms of the press and media.

Pharmaceutical companies, primarily those with biological treatments for RA, have print and TV ads that show happy, active people easily engaged in physical activities such as cooking in the kitchen, playing soccer with children, and living carefree lifestyles. For example, watch this recent TV ad for Humira. The Enbrel ads featuring golf professional Phil Mickelson, which he takes for psoriatic arthritis (an autoimmune relative of RA), make it sound like he’s licked the disease and is better than ever. One review of these ads points out the caution that must be taken from this story. Nevermind the potential paid spokesperson issues involved in such ads. A recent article in USA Today portrayed a person with RA who is taking a current biological treatment and lives a very active physical lifestyle. The author used language that made it sound like the person was cured. The article received scathing reviews from numerous groups and people (read the posted comments) and the story was slightly modified although the main misrepresentations remain. A recent issue of the magazine Arthritis Today published by the large patient advocacy non-profit Arthritis Foundation features a cover story where a person with RA competes professionally as a triathlete. Upon seeing and reading such portrayals as those listed above, the general public would be prone to believe that rheumatoid arthritis is not that big of a deal.

It may be true that some RA patients do quite well due to low levels of disease activity, natural remission (a rarity), or symptoms well controlled by treatments. Biological treatments developed over the past 15-20 years resulted in many patients doing well and with rheumatologists indicating that they’ve seen a dramatic change in their practices. But the reality for a large proportion of RA patients is that they suffer everyday with uncontrolled or poorly controlled symptoms and do not adequately respond to treatment combinations. Up to 40% of RA patients are not helped by RA treatments or cannot continue treatments due to side effects (see this study by Rubbert-Roth and Finckh, 2009). One recent study reported that higher priced biologic drugs have had the same impact on time lost at work as older DMARD treatments. A meta-analysis (a statistical analysis of many studies) by Callhoff, et al (2013) demonstrated that the use of biologics help RA patients in physical functioning but that improvement was only seen in 50% of patients.

Disease remission is the goal of rheumatologists and advances in treatments help towards this goal (see this article by Collins in 2012). The currently accepted standard for remission as reported in Felson, et. al, 2011, p 581 is…

At any time point, patient must satisfy all of the following:
Tender joint count - equal or less than 1
Swollen joint count – equal or less than1
C-reactive protein – equal or less than 1 mg/dl
Patient global assessment – equal or less than 1 (on a 0–10 scale)

These are stringent criteria and it would be difficult for many RA patients to meet this even on biological treatments. In 2011, Sokka et al stated that remission “…is not a common phenomenon in real life due to many hurdles.” And the rate of remission depends on the criteria used (Mäkinen, et al., 2005) with rates of remission ranging from 17-55% with only 13% reported as obtaining remission on all three sets of standards used. Many clinical trials are considered a success and the drug receives governmental approval for public use if the patients met older criteria oftentimes reported as ACR 20, ACR 50, or ACR 70 meaning that the patient reported a 20%, 50%, or 70% improvement in symptoms. In most clinical trails, the majority of patients don’t meet the ACR 70 (see this package insert which reports clinical study results). This is not remission, only an improvement in symptoms. It stands to reason that hundreds of thousands of RA patients in the U.S. alone do not meet “remission” criteria and that does not include the untold millions throughout the world.

The reality of unfettered disease activity is clearly evident in the RA patient online community. Read any of the discussion forums at the popular sites listed below and the norm will be discussions of patient suffering, unrelenting symptoms, lack of treatment efficacy, and side effects preventing them from taking prescribed treatments.

One could argue that these communities may be populated primarily by patients with uncontrolled disease activity and who are seeking help and relief. Even if this is the case, there are still tens or hundreds of thousands of patients who visit and post on these sites.

Read some of the most popular blogs written by people with RA and it will be clear RA is a constant companion that has had a great impact on life. Lene at the Seated View is in a wheel chair due to permanent joint damage and has been fighting RA symptoms for years. Carla at Carla’s Corner just had a knee replacement and this is not her first joint surgery due to RA. Mariah at her blog From This Point. Forward is changing medications once again due to unrelenting disease activity. All of these bloggers are taking some of the most current and sophisticated treatments for RA. These blogs and others (see this list) represent the patient voice of how the disease is really affecting their lives.

Could there be some people with rheumatoid arthritis who are in remission and leading physically active lives? Should these cases be celebrated? Can the stories of their lives be used to bring hope? The answer to all of these questions is a resounding yes. But it must be clear to medical professionals, pharmaceutical companies, government health funding agencies, researchers, non-profit agencies, advocacy groups, and the general public that such cases are the exception and not the norm. The vast majority of RA patients never reach clinical remission. Large portions of RA patients are not helped by the current RA treatments on the market or suffer side effects preventing them from continuing treatment.

Some organizations and individuals in the media may have underlying promotional and marketing purposes that drive their messages. But all I ask for is a balanced and realistic portrayal with integrity (see the journalistic code of ethics) in popular press and media. Anything other than that will only lead to misunderstanding, underrepresentation, and lack of advocacy for a disease that has no cure and whose current line of treatments that are not completely effective.

Postscript: Scott S commented on this article and left a wonderful quote from now deceased Deb Butterfield from her post titled Perceptions vs. Reality in Insulin-Free Times – “By showing the world only the happy face, and not the tragic disease beneath, we are endorsing the prevailing philosophy of tolerating, rather than curing, diabetes.”

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