I posted the following letter to my Facebook account today, in honor of World Arthritis Day. I know most of the readers of my blog are already far too well-acquainted with autoimmune/inflammatory arthritis, but for those of you who aren’t, or who are interested in the current “arthritis situation,” particularly in the US, see below.
Dear friends,
This is long, so I want to thank you in advance for reading. I’ve put some key points in bold, so feel free to skim. It means a lot to me that you are kind (or curious) enough to click though and read this.
If, on second thought, you only have a minute, forget everything you thought you knew about “arthritis,” and go read this 60 Second Guide to Rheumatoid Arthritis (RA).
If you’re up for a bit of an essay:
You’re probably looking at the title of this note and thinking “World Arthritis Day? What does that have to do with me?” Well, a lot, actually. Did you know that 1 in 5 Americans has been diagnosed with arthritis (~50 million) and public health experts expect this number to continue to rise as the population ages? (1) Many people think of arthritis as a disease of the elderly, but that’s only part of the story. Nearly two-thirds of arthritis diagnoses are in people under the age of 65, including children, teens, and young adults (1). Likely several people close to you have been affected by arthritis, though you may not know it because the symptoms are often invisible.
“Arthritis” is an umbrella term that covers over 100 different diseases and conditions. The most common form of arthritis is Osteoarthritis (OA), the kind of wear-and-tear, comes-with-old-age arthritis that is limited to the joints, is generally diagnosed in older adults, and can often be managed with exercise, weight loss, and over-the-counter medication. However, among those 100 kinds of arthritis, there are roughly 30 forms of autoimmune arthritis (also sometimes referred to as “inflammatory rheumatic diseases” or “inflammatory arthritis”) that can be life-threatening and affect not only the joints, but organ systems throughout the body, for example the heart, brain, eyes, lungs, GI tract, skin, and vascular system. In these diseases, the body turns against itself, deploying the immune system in the destruction of its own joint linings, organs, and connective tissues. Some common types include rheumatoid arthritis (RA), lupus (SLE), scleroderma, juvenile idiopathic arthritis, and Sjogren’s syndrome (recently brought to national attention by tennis star Serena Williams (2)). It is not uncommon for an individual to be diagnosed with multiple or overlapping autoimmune conditions, or to have several years pass between the onset of symptoms and a final diagnosis.
Currently, over 7 million Americans suffer from autoimmune arthritis and inflammatory rheumatic diseases, with women and minorities disproportionately affected. (The total for all autoimmune diseases, not just those under the arthritis umbrella, is estimated at about 24 million). These diseases are frequently diagnosed between the ages of 15 and 50, often striking individuals as they enter college, join the workforce, and/or try to start a family.
What exactly does this “7 million” mean for you? According to the Mayo Clinic, if you are a woman, you have a 1-in-12 chance (8.4%) of developing an inflammatory autoimmune rheumatic disease in your lifetime (3). For men, that number drops to a still-surprising 1-in-20 (2). By comparison, a woman has a 1-in-8 (12.15%) chance of being diagnosed with breast cancer in her lifetime, but only a 1-in-36 (2.81%) chance of dying from the disease (4). Yet the funding disparities between arthritis and other diseases are depressingly large. (5) In addition, it’s difficult to determine specific risk factors or causes for these diseases; while there seems to be a genetic predisposition in some patients, no one knows exactly what causes the onset of autoimmune arthritis.
Autoimmune arthritis and cancer are treated with many of the same drugs, including chemotherapy and newer biologic medications used to suppress parts of the immune system– you may have seen advertisements for these on TV, like the one for Enbrel featuring golfer Phil Mickelson. These drugs are expensive, powerful, and dangerous, but for those people with autoimmune arthritis who can both tolerate and afford them, the benefits generally outweigh the risks. Unlike the majority of cancer survivors, however, autoimmune arthritis patients must remain on a low dose of these drugs for the rest of their lives in order to prevent crippling disability and organ damage because there is no cure. Even with well-controlled symptoms, the life expectancy of a person with a disease like rheumatoid arthritis can be shortened by 3 to 15 years (5,6).
There are also a bunch of other unpleasant details that go along with autoimmune arthritis. Apart from excruciating pain, the symptom common to nearly all forms of autoimmune inflammatory arthritis is fatigue. And not just “oh, I’m a little tired today” fatigue, but the kind of bone-tired fatigue that accompanies a bad case of the flu. This is one of the hardest symptoms for patients and their doctors to manage, even after inflammation and pain have been reduced. In addition, medications used to suppress the immune system cause all kinds of unwanted side effects, which can include weight gain, weight loss, hair loss, cognitive impairment (aka “brain fog”), sun sensitivity, insomnia, increased risk of infection, increased risk of certain kinds of cancer, and more. On top of all of this, grappling with the long term effects of a chronic, painful, incurable, and often invisible disease can be downright depressing, even for the most optimistic person.
So the next time someone mentions that he or she has arthritis, pause a second before you say something like:
Because in many cases the answer will be “no”: No, I’m not too young. No, your grandma probably doesn’t have what I have. No, tylenol/glucosamine/some extreme diet/internet-cure-of-the-week won’t help. Yes, exercise is good, but only low impact, and only when inflammation is under control. Chances are, however, polite questions, or a simple “Is there anything I can do?” will be much more graciously received.
For more information, or to find out how you can get involved– even just by emailing your elected officials– visit the Arthritis Foundation, especially the section on advocacy, or the World Arthritis Day website. Or you can just ask me. Knowing is half the battle, right? Thanks for reading.
References:
1. http://www.cdc.gov/chronicdisease/resources/publications/AAG/arthritis.htm
2. http://well.blogs.nytimes.com/2011/09/02/venus-williams-brings-attention-to-sjogrens-syndrome/
3. http://www.modernmedicine.com/modernmedicine/Modern+Medicine+Now/Rheumatic-Diseases-Afflict-1-in-12-Women-1-in-20-M/ArticleNewsFeed/Article/detail/707115
4. http://www.cancer.org/Cancer/CancerBasics/lifetime-probability-of-developing-or-dying-from-cancer
5. http://report.nih.gov/rcdc/categories/
5. http://www.jrheum.com/subscribers/04/03/supplement/3.html
6. http://www.nlm.nih.gov/medlineplus/ency/article/000431.htm
“I can with one eye squinted take it all as a blessing.” –Flannery O’Connor
After I posted the photo of Flannery O’Connor yesterday, I went back and read more of her letters and thought about what it must have been like to live through Georgia summers, with lupus, in the 1950s and 60s. More than that, though, I thought about what it must have meant to be diagnosed with systemic lupus erythematosus back then—back when your only options for treatment were corticosteroids and aspirin, back when it took so long to get a diagnosis and the treatments were so limited that it was basically a death sentence.
In the 1960s, scientists discovered that the anti-malarial drug Plaquenil was effective in both rheumatoid arthritis and SLE. It has been one of the only drugs approved for the treatment of lupus. Those of you playing along at home may be laughing, sardonically, since the treatment protocol for lupus has changed little since the ’60s, just swap out the aspirin for ibuprofen or naproxen and add a dash of low-dose antidepressants for the co-incident fibromyalgia.
Given this history, then, it’s no surprise that most of us were thrilled to hear that Benlysta, heralded as the “first new lupus drug in 56 years!” was approved by the FDA this past March. Benlysta (belimumab) is a medication delivered by IV that targets B-cells, a part of the immune response that seems to be out of whack in lupus patients. (The science is significantly more complex than that, involving an intricate dance of activators, antigens, modulators and interactors. If you like that sort of thing, look here for a PubMed citation.)
But the emergence of Benlysta on the scene isn’t exactly a magic cure-all. In fact, the FDA vote was extremely close because of concerns that the drug was only marginally effective. This short piece from the Associated Press somehow manages to capture the breathless excitement and serious concerns about the drug all at once, both of which also come through in a slight muted form in the FDA press release. Among the serious concerns: the drug appears to be ineffective in many patients of African descent (who, by the way, tend to be diagnosed with lupus in much higher numbers along with other non-white populations). What the press release and other news coverage also frequently fail to mention is the exorbitant price tag for Benlysta and similar biologic drugs used for rheumatoid arthritis and other conditions. Like thousands-of-dollars-every-month expensive. Like don’t-expect-your-lousy-hmo-insurance-or-medicaid-to-cover-it expensive.
Luckily, scientists are still hard at work to map the far corners of our immune systems, dysfunctional or not. The most recent issue of The Rheumatologist includes an update on research into the role of T-cells in lupus that could lead to more effective treatments for more people. And I’m excited about that. What I’m also excited about is my chance to participate in the American College of Rheumatology’s “Advocates for Arthritis” Program. When I go to Washington this fall to meet with members of Congress about the pressing need for research funding for arthritis, I will cite these studies, and the studies that led to the development of Benlysta, and their importance in improving the everyday lives as well as the long-term prognosis for people with lupus. Fifty-six years is not ok, people!
O’Connor, diagnosed at age 25 in 1951, outlived the five years that her doctors gave her with an additional nine, making it almost to her 40th birthday. I can only imagine the pain and fatigue that she worked through during those years while she managed to complete two novels and several collections of short stories, even as her body began to fail. Most of us now, diagnosed with Lupus in our 20s and 30s, have a much better chance of having a “normal” lifespan, simply because there are more ways to treat the complications from lupus. We’ve gotten better at catching kidney, lung, and heart involvement earlier and addressing these issues and slowing their progression before they become life threatening. We know about the Faustian bargain of long term use of prednisone and other corticosteroids. And I hope—with active and public communities on Facebook, Twitter, and other social networking sites (hi, chronic babe! hi, but you don’t look sick!)— we are getting better at shedding the stigma of having a chronic illness and speaking out about what we need. The magic of the internet lets us all be activists, even in our pajamas. And that is really something to be excited about.
Edited to add: This entry was featured on chronicbabe.com in Blog Carnival #34: What’s HOT?