article-2631954-1DF7642D00000578-238_634x621

Two weeks ago at the Cannes Film Festival, a parade of aging action stars, including Sylvester Stallone, Arnold Schwarzenegger, Harrison Ford and Mel Gibson, rode into town on tanks to promote their latest film The Expendables 3. At a press conference following the parade, Mr. Stallone was asked when he and his cast mates would be too old to continue making action movies.

“Let me tell you something,” Stallone responded. “We are children with arthritis. We are forever young.” The crowd went wild, erupting with cheers and laughter. The film’s director, Patrick Hughes, then chimed in: “We are going to put that on the poster: Expendables 3, featuring children with arthritis.” More laughter.

Mr. Stallone’s quote was the headline or the prominent quote featured in nearly every major news story covering Cannes that weekend, from CNN to the BBC.

If you are a parent or family member of someone with juvenile arthritis, these comments may have made your blood boil. You may be outraged at what appear to be ignorant, insensitive remarks at the expense of your child or loved one. And, perhaps, you want the perpetrators of these remarks taken to task and the record set straight.

JAA received a number of requests to reach out to Mr. Stallone. We contacted him both through a mutual friend and through official channels, and we were assured that Mr. Stallone meant no offense by his remarks. We have no doubt that this is true. Celebrities — particularly an American icon like Stallone, who has been in the public eye for over forty years — are usually well versed in public relations and don’t seek to offend sick children, particularly at a press conference.

Though Mr. Stallone will likely not make this faux pas again, he is also unlikely to address it further. When Stallone referred to himself and his cast as “children with arthritis,” he was trying to create an oxymoron, using “arthritis” as shorthand for “old.” And, like it or not, that’s an ingrained association — and one that’s not entirely inaccurate. Over 90% of arthritis is osteoarthritis, which is degenerative. While osteoarthritis does affect a number of younger people as well, it is a sign of the body wearing out, so its association with aging is fairly unassailable.

Judging by the audience’s reaction, everyone in the room took his comment exactly as it was intended. Further, given that the international press unflinchingly ran Stallone’s quote as a headline, it’s safe to say that they did not see the remarks as anything other than humorous.

Can we really blame them? Think about it. Did you know that juvenile arthritis existed before your child was diagnosed? We certainly didn’t. Nor did our friends and family.

May was National Arthritis Awareness Month. The fact that the biggest headlines by far about arthritis were Mr. Stallone’s comments just speaks to the dire need for much, much, much more awareness. Juvenile arthritis isn’t a new disease, but it may as well be for all that people have heard of it. Efforts to raise awareness of juvenile arthritis have ostensibly been ongoing for more than 60 years, but have obviously been unsuccessful to date.

Albert Einstein said that the definition of insanity is “doing the same thing over and over again and expecting different results.” So, how do we get different results? How do we make the world aware? For starters, we suggest a simple yet significant change in messaging:

We need to stop telling the world that kids get “arthritis.” Kids don’t get arthritis, as most people think of arthritis. Kids get juvenile arthritis.

The biggest obstruction to juvenile arthritis awareness is the constant conflation of all forms of arthritis. Juvenile arthritis constitutes little more than one half of one percent of the arthritis population, and it’s completely different from osteoarthritis, and yet we keep saying that kids get arthritis. Messages that kids have “arthritis” confuse the public and rob our children of the attention, urgency and funding that they deserve.

When the average person hears, “kids get arthritis,” what goes through his head? Probably something like this: “Huh. Weird. So, do these kids have the disease in that Brad Pitt movie where they age really fast?” (Note that progeria, which affects just 250 children worldwide, has gotten more press than JA.) Then perhaps he thinks: “I guess they must have trouble opening jars until they pop a Tylenol, like in the commercials. But kids shouldn’t be opening jars anyway. Their moms can do that for them. Glad that’s solved.” The end.

Have you ever noticed that no one ever talks about kids getting diabetes? They use the term juvenile diabetes. The two words are joined at the hip— always together.

However, that wasn’t always the case. Forty or fifty years ago, “diabetes” might have been used as shorthand for “overweight,” and people scratched their heads at the notion of kids getting this disease. That’s because, much like the situation with arthritis, 90% of diabetes is the lifestyle-related type 2, and 80% of those with type 2 diabetes are, in truth, overweight.

In 1970, some parents founded the Juvenile Diabetes Research Foundation to raise funding and awareness specifically for juvenile diabetes, the autoimmune form that affects kids. For the past forty years, JDRF worked diligently to differentiate juvenile diabetes in the public’s mind from the general term “diabetes.” And the results speak for themselves. Today, no one confuses the two forms. There are no jokes at press conferences. Juvenile diabetes is taken seriously and regarded as a disease worthy of attention — and funding.

Currently, juvenile diabetes receives $200 million in private funding annually —over 100 times the funding going to juvenile arthritis, which affects twice the number of kids. Messaging matters. The proof is in the pudding.

Juvenile arthritis may constitute just a tiny fraction of the arthritis population at large, but in terms of children’s diseases it’s a monster. It’s one of the most prevalent diseases affecting kids. And yet virtually every other children’s disease stands on its own, often out-fundraising its adult counterpart.

The fact that juvenile arthritis has almost zero public awareness — and receives only a miniscule fraction of the funding it should — is testament to the fact that the current terminology and awareness tactics are simply altogether ineffective.

Until we stop conflating all forms of arthritis, juvenile arthritis will never get the attention and funding it deserves. We are unnecessarily encumbering ourselves with the stigma and ingrained associations that come with the term “arthritis” — associations that we will likely never succeed in changing, because they are based in fact. And those associations are costing our kids millions of dollars in research and support each year.

So, here we are… at the end of Arthritis Awareness Month … with newspapers around the world publishing headlines about children with arthritis… except the “children” they are promoting are aging action stars in combat gear.

But unlike Hollywood, our heroes are real. They are our children, and they are certainly not expendable. We owe it to them to make sure that the world knows their story, takes their disease seriously, and helps to generate the funding that will give them every chance at a bright future.

No one is suggesting that this will be easy. Change is always hard. And juvenile arthritis is an “underdog” disease. But, as Sylvester Stallone has shown better than anyone, an underdog with enough heart can go the distance.

Joel Rothman & Laura Schultz
Founders, Juvenile Arthritis Association

 

Share →

Leave a Reply