The link above goes to a press release about a study by the Arthritis Research UK Centre for Genetics and Genomics at The University of Manchester. This kind of work is really important, and I suspect we will see major changes in the diagnosis and categorization of autoimmune and autoinflammatory diseases in the next decade. But it brings up some interesting ethical dilemmas. For example, knowing that there’s no cure, would you live your life differently if you were told your had a “RA gene” and that a viral or bacterial infection could bring on full-blown disease?
Abstract and full paper here.
In the academic discipline of Disability Studies, one of the topics in discussions of disability narratives and the social construction is disability and the so-called “super-crip narrative” or super-crip stereotype. The super-crip narrative follows a familiar pattern of documenting the experience of the individual who achieves great things in spite of a disabling condition. Usually great emphasis is placed on their “positive outlook” or optimism and sold to the public as a “feel good” story. See, for example, much of the recent coverage of Olympic sprinter Oscar Pistorius, known for his high tech carbon fiber prosthetic legs and childhood amputations as much as his running times. Other examples include historical figures like Helen Keller and FDR, or, more recently, Christopher Reeve.
One of the primary critiques of the super-crip narrative is that it emphasizes the idea that people with disabilities should be smiling, good-natured, and docile about their experiences (aka “The Good Cripple”), even when those experiences are painful, frustrating, and the source of a great deal of unhappiness. These stories tend to reinforce the expectation that people with disabilities should be grateful for any assistance they receive, no matter how limited or patronizing. They also put undue pressure on people with disabilities to “overcome” their disability— as though living with a disability weren’t difficult enough!— or, as in the case of a condition like autism, they suggest that disability is always paired with an extraordinary skill or talent. The Supercrip Narrative can also stand in the way of accommodations for people with disabilities, implying that “overcoming” is a matter of will and that accommodations are unnecessary, or that one should be nothing but grateful for any accommodation, no matter how small. Basically, the super-crip narrative says, “if you can’t overcome your disability, you’re not trying hard enough.”
While I am opposed to the sort of patronizing narrative designed to be an inspirational story that makes able-bodied people feel better about themselves, I still feel myself drawn to stories that highlight the achievements of people with disabilities and chronic illnesses, whether these stories are of “overcoming” or simply being. For example, I was interested to find out that Shannon Boxx, one of the members of the US Women’s Soccer Team, has lupus and Sjogren’s disease. Her story—both her bravery at revealing her diagnosis, and her commitment to continuing her soccer training despite the disease— is inspiring to me, as a fellow lupus patient.
I know I speak for many of us diagnosed with disabling chronic illnesses when I say that diagnosis, treatment, and the day-to-day experience can feel like the slow dismantling of your hopes, dreams, and aspirations. Suddenly things that seemed easy (or that required little thought or effort) become nearly impossible. On a good day you may find yourself making choices between, say, exercising, doing chores, or seeing friends. On a bad day you have to decide if you have the energy to take a shower or even get out of bed. Often pride gets in the way of revealing how terrible you feel (I know I would be lost without my DermaBlend concealer!). On those hard-to-get-out-of-bed days, reading about someone like Shannon Boxx helps me to feel something other than hopeless resignation that I will never achieve the things that I have set out to achieve in my life.
So how do we make room for stories about illness and disability that offer hope to those of us with similar experiences without enforcing the expectation that we be happy, compliant, inspirational figures to alleviate the guilt of those who are not (yet) ill or disabled? Certainly the move away from terms like ‘handicap” and “cripple” and toward people-first language has helped. But there’s still a great deal of misunderstanding and animosity toward people with chronic illnesses and disabilities—no need to look any further than the politic discourse in the US surrounding access to healthcare.
I think part of the responsibility is for those of us who struggle with disabilities and/or chronic conditions to document our experience in an honest and straightforward way, and to educate others about the destructive power of negative stereotypes. Stereotypes about psychosomatic and psychiatric disorders and “hysterical” women continue to delay the diagnosis and treatment of autoimmune diseases in both men and women (it took seven years from the onset of her illness for Shannon Boxx to receive her diagnosis). Well-meaning friends, family, and even doctors suggest things like brisk walks, therapy, and prayer. This is unacceptable.
The average person encounters disappointment and unhappiness in his or her life, and no one expects that person to remain smiling, grateful, or “inspirational” even in the face of great hardship and suffering. Why should the experiences of people with disabilities and chronic illnesses be any different?
Several of my good friends are firm believers in free market economics. They argue that regulation gets in the way of supply and demand, and that the market will find its own equilibrium (i.e. “balance” or “correct” itself) without the interference of regulators. I have gotten into some very heated arguments about the regulation of healthcare and drug companies because I don’t believe that these industries can be treated in the same way as other sectors of the market. I’m not going to address the issue of the regulation of healthcare/insurance right now because the scope of that argument is way beyond a single blog post. What I do want to point out, however, is the necessity of proper regulation of the companies that manufacture medications.
Prescription medicines cannot be a free market. Why? Because consumers have neither director control nor significant choice when it comes to the medicines they are prescribed. Certainly we can ask our doctor to prescribe a less-expensive alternative (when one exists) or choose not to treat a given condition or illness, and we have a choice about where to get our prescriptions filled. But in many cases there will be a single drug—or set of drugs—that provide ideal treatment for us. Sometimes the ideal drug will be incredibly expensive (see: Biologics) due to the research and clinical trials that were necessary to bring the drug to market. Other times the ideal drug will be extremely inexpensive (see: Prednisone, generic tricyclic-antidepressants, etc) because it is off-patent and inexpensive to produce.
My health insurance has a $1500 annual prescription limit, so I’m lucky that the vast majority of medications I’m currently taking fall into the latter category. (And no, I do not have a “choice” to purchase a different plan from my employer, nor can I afford to purchase another kind of private insurance). But it means that my doctor and I must be strategic about the drugs we choose, and that when/if she decides that a biological medication like Enbrel, Rituxan, or Benlysta is necessary for my treatment, I will need to seek financial assistance from an outside entity like a charity or from the individual drug company that produces and distributes the medication. It is up to me to know what drugs are covered, what drugs are not covered, and how I am going to distribute my annual benefit.
|generic MTX vial|
Yet sometimes something goes terribly awry, usually at the level of manufacturing, and suddenly a drug which previously fell into the “generic” and “inexpensive” categories becomes a hot commodity. Right now that’s the case with my old nemesis methotrexate. This article from the New York Times outlines the current situation, focusing on methotrexate’s utility as a life-saving treatment for childhood cancer, though the drug is also widely prescribed for a broad range of autoimmune conditions. The problem, as I see it, is that there is little profit to be made on a drug like generic MTX, so when one manufacturer (out of five) has to recall a drug because of a manufacturing issue (like, “Ooops, we found a bunch of glass shards in a whole batch…“), there’s no [financial] incentive for the other four manufacturers to pick up the slack, even if by doing so they will potentially be saving lives.
A situation like this also raises the issue of who should be in charge of making sure the company is using the correct manufacturing techniques and properly inspecting the finished product so consumers aren’t harmed. The free market economist might argue that the demand and supply would be enough, but I disagree—particularly because consumers rarely have a choice in which manufacturer their generic drug comes from, nor do pharmacies make this information readily available. Unless an agency like the FDA steps in, there is no reason for the companies not to choose the most inexpensive manufacturing process, even if it means a minor decrease in quality, and make those products available for sale. In this case, harm to individuals becomes a number, a probability, a risk-benefit analysis that is disconnected from the experience of actual human beings.
So then the drug goes on the grey market, and people are suddenly paying 80 times more for the drug than they normally would. Ultimately this brings me back to what I see as the key ethical question at the heart of debates about healthcare: Should access to treatment be tied to one’s income and economic power? Or do all people deserve access to life-saving drugs and medical procedures, regardless of income? Should drug companies be driven by profit? There are those who argue that the only way new drugs will be developed is if there’s the possibility for major profit once the drug is released. That strikes me as a chilling state of affairs.
In the last few days, my Google News feed has been full of media reports about a recent study that was published in the medical journal Arthritis Care & Research. The complete title of the article is “The public health impact of risk factors for physical inactivity in adults with rheumatoid arthritis” and the abstract can be found here. The preferred headlines in places like USAToday, WebMD, and About.com read “2 in 5 Rheumatoid Arthritis Patients Sedentary” and “Too many rheumatoid arthritis patients inactive, study finds.” I am incredibly frustrated by both the design of the study and its attention from major media outlets, as well as the underlying assumptions it (and the reporters who have summarized it) make about individuals with Rheumatoid Arthritis (RA) / Rheumatoid Autoimmune Disease (RAD).
1. Research design issues:
First of all, the study involved only 176 adults and it followed their activity level for 7 days. So one week of data based on the experiences of 176 people is being used to extrapolate to the behaviors of the 1.3 million Americans who have RA/RAD. In addition, while the study asked participants to rate things like “lack of motivation” and “lack of strong beliefs” regarding exercise, it’s not clear whether they were experiencing pain at the time of the study. Though the abstract claims to have taken pain into consideration, no information is provided regarding self-reported pain levels or Disease Activity Score (DAS). We have no idea if these individuals had long-standing, well-controlled RA or if they were actively flaring during the (very brief) study.
2. Misplaced media attention:
Despite the small scale of this study, it has made headlines. Why? Likely because it is a relatively straightforward study that makes clear, easy-to-implement recommendations. (“These results support development of interventions that increase motivation for physical activity and that lead to stronger beliefs related to physical activity’s benefits should be considered in public health initiatives to reduce the prevalence of physical inactivity in adults with rheumatoid arthritis.”) Basically, physicians just need to convince RA-ers of the importance of exercise and they’ll do more. It makes a great sound bite and summarizes well, plus it plays into the ongoing obsession with the so-called “Obesity Epidemic” and the American tendency to place blame on individuals and their behavior for chronic health problems.
In the same issue of Arthritis Care & Research two articles on much larger, and to my mind more important, RA/RAD-related studies were published. Both studies came to the conclusion that physicians need to do a better job of assessing and treating their patients’ pain. One, “Pain as an important predictor of psychosocial health in patients with rheumatoid arthritis,” involved over 15,000 patients and showed a direct link between high pain levels and “psychosocial health variance” (depression, anxiety, negative outlook, etc). The other, “Determinants of discordance in patients’ and physicians’ assessment of rheumatoid arthritis disease activity,” had a cohort of over 7,000 patients. There was a significant disagreement between patients and their doctos in 36% of cases, primarily related to self-report of pain and fatigue. The authors conclude: “Sensitivity to the “disease experience” of patients, particularly pain and fatigue, is warranted for effective care of RA.” Why don’t studies like these appear in popular media?
3. Damaging assumptions: RA patients are lazy and don’t understand the importance of exercise
Based on my experience of talking with other autoimmune arthritis patients, many of us were extremely active in the months and years prior to diagnosis. We are now depressed and unhappy that we have neither the energy nor the strength to continue to exercise like we once did. As recently as a year and a half ago, I was running 10 miles a week and taking dance and yoga classes on top of that. In the past four months, I’ve been to the gym exactly twice. My current activity level rarely goes beyond walking and gentle stretching. How can it when I get winded and dizzy from walking up a flight of stairs? (And it has to be a good day for me to take the stairs at all!) The pain in my hands and wrists prevents me from doing many of the yoga poses I used to love, and the pain in my feet makes walking long distances painful and running or dancing nearly impossible. I have lost 15-20 pounds in the past year and continue to lose weight. I know, from Kelly’s posts at RA Warrior, as well as the conversations I read on Facebook and twitter, that many of us deal with loss of strength and cachexia (muscle wasting), or at the very least are prevented from exercising on a regular basis by the constant pain and fatigue caused by our disease. We understand the benefits of exercise. Perhaps if the studies that focused on managing pain got more attention, we would have more resources to manage our pain, and ultimately be more active. It cannot be the other way around.
When will doctors and researchers see us as individuals who want to be as healthy and pain-free as possible, rather than as Disease Activity Scores and swollen joint counts?
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.
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.