In the Kingdom of the Sick: A Social History of Chronic Illness in America

by Laurie Edwards

  Patient Advocacy and Health Care Reform

  The social history of modern chronic illness is also inevitably a history of activism. Breakthroughs like the triple-drug cocktail for HIV, workplace accommodations for those disabled by their chronic illnesses, informed consent for clinical trials, and disclosure of diagnosis were due in large part to patient advocacy. Over the last several decades, we’ve seen groups set aside specific agendas and mobilize for universal gains. One of the biggest issues affecting people with chronic illness right now is health insurance. So where were the protests, the mobilization, and the impassioned action during the tenuous battle for health care reform in 2010? If health insurance and access to care isn’t a rallying point for patients with chronic illness, what is?

  The Patient Protection and Affordable Care Act, the end result of the bipartisan squabble over health care reform, has been criticized by some as not doing enough for people with chronic illness and by many others as being a bloated attempt at reform that will end up bankrupting the system further. The Supreme Court upheld its constitutionality in 2012, though the debate is far from over. There are reasons many presidents have tried to reform health care in this country for decades and have not been successful. Powerful insurance lobbies, deeply entrenched political positions on the size and scope of government, and a whole host of conflicting agendas and priorities on state and federal levels are just some of the challenges. No one disputes that health care is too expensive and too inefficient in this country, nor that if patients have adequate insurance and can access preventive care, both health outcomes and health care spending will improve. What we can’t seem to agree on—and even after President Obama signed the Act into law, what we still don’t agree on—is the best way to make this happen. While some remain steadfast that a true single-payer system like we see in Canada or the United Kingdom is the only way to offer equal, adequate care, on the other end of the spectrum, critics want health insurance to remain a private enterprise.

  Much is at stake for patients with chronic illness in the Patient Protection and Affordable Care Act, including an end to lifetime caps on coverage by insurers, a huge issue for patients with ongoing and expensive chronic conditions. Companies can no longer deny coverage based on preexisting conditions, which is perhaps the most important change for people with chronic illness, since chronic illness is the embodiment of a preexisting condition. It also ensures that insurance companies offer coverage to children with preexisting illness. It extends coverage to young adults on their parents’ plans through the age of twenty-six, including young adults who are married or students. Insurance exchanges set up for individuals and small businesses will allow them to look for competitively priced plans they can afford. Health insurance is now compulsory, and those who don’t purchase it will face graduated tax penalties.41

  It is the mandate that individuals must purchase health insurance that concerns opponents, as well as the tax penalties and worries that governmental oversight will not be up to the task of managing such an enormous, intricate system. (“Look at Medicare!” they claim, or at the beleaguered Social Security system; if the government can’t handle that, how can it handle health care for all?) For patients with chronic illness who longed for a true universal system—the single-payer route—the Affordable Care Act is a step, but it is not the guarantee they’d hoped it would be.

  E-Patient Dave reminds us that cultural change, however slow to evolve, begins with the conversations people have about what is possible. In that light, I see something not just salvageable but redeemable from our imperfect solution.

  Today’s debate takes place within a long-standing context of advocacy for health care reform. In the early twentieth century, health insurance and employment were closely linked. Progressive reformers wanted to protect workers, who lost too much of their wage and too often sank into poverty due to sickness. In fact, Theodore Roosevelt’s “insurgent Progressive party” called for compulsory health insurance as far back as 1912.42 Suffragists also took on the cause, since health insurance included maternity benefits for female laborers, but any momentum was squashed by a powerful conflagration of elites: physicians, business leaders, insurance companies, and conservative politicians.43 (An eerily familiar pattern, no?) Depression-era politics and the New Deal ushered in a period of upheaval, when social movements to protect workers and provide economic security increased. Given the steep toll exacted by the Great Depression, economic recovery was prioritized over medical care.44 Nowadays, the response to a similar argument about our current economic state is that appropriate medical care is an essential part of recovery.

  Momentum picked up in the 1940s, when the cost of medical care became burdensome enough for labor unions to enter the fight. Labor backed proposed legislation to create a national medical insurance program that would be financed through Social Security payroll taxes, a bill that enjoyed President Harry Truman’s support. However, as author Beatrix Hoffman points out, the opportunity to mobilize from the grassroots was lost when labor leaders and politicians felt they did not need the support or inclusion of labor union member themselves.45 Top-down mobilization is rarely successful in meeting the needs of the people it is meant to represent.

  Another window of opportunity emerged in the 1960s during the battle over Medicare. Civil rights activists saw the protections Medicare offered elderly Americans as part of a larger war on poverty, and labor unions endorsed the legislation. Elderly people made more sympathetic victims than other groups, and made it much harder for influential groups like the American Medical Association to discredit them. Now, the image of reform wasn’t the face of a progressive suffragette, a labor boss, or a wily politician—it was someone’s grandmother or grandfather. The elderly would come to represent a strong and well-populated arm of support for health care reform.46 Yet again the relationship between economics and health care became evident in the 1980s and ’90s, when the rising cost of the uninsured made reform a popular, accepted concept once more. Hoffman attributes the failure of the Clinton presidency to enact health care reform to its reliance on elite decision making that left out the grassroots members, only consulting citizens when the plan had already been drafted.47

  With all this in mind, let’s consider the situation in 2010: steep economic decline and unemployment. Staggering national debt and soaring health care costs, especially for those with chronic illness. Dissatisfaction and outrage over lapses in coverage, denial of claims, and other health insurance woes. With nearly half the country living with chronic illness, this should have been a catalyst moment for patients with chronic illness.

  “If 75 percent of health care spending goes to the chronically ill, then health care reform is fundamentally about sick people. Yet the organizations that ostensibly advocate for and empower us did nothing. It still makes me angry. One of the organizations I used to belong to even prohibited its members from discussing ‘political’ issues in their discussion board. A few of us fought against that online, but meanwhile the organization itself was absolutely silent; not even a link or notice on its home page that the debate was going on,” says Duncan Cross.

  So where were all the protesters and demonstrations, why weren’t people lying in the streets like they did during the disability rights movement in the 1970s? Dr. Joe Wright asked me this question one summer evening in 2009, during the windup to health care reform. I thought about this as I watched the drama over health care reform unfold, and as I watched President Obama sign the bill into law from my hospital bed, where I was twelve weeks pregnant and fighting to breathe and keep my baby safe. (Tweeting it, of course, as much as my poorly placed IV allowed me to type). I’ve thought about it as I researched and wrote about past reform movements, and various successes and challenges they’ve met.

  If we didn’t mobilize in a significant way for health care reform, an issue that had such clear relevance, will chronic illness as a whole ever see the same type of mobilization we saw with other patient and activis
t populations? Among the many patients, physicians, and experts I spoke with in writing this book over the course of several years, the resounding consensus is no. There are so many different diseases under the umbrella term “chronic illness,” and we don’t often want to align ourselves with other patients, especially those who may have acquired their disease differently. Research and funding is hard-won, especially in this economic climate, and it is easy to see why sharing a piece of the research checkbook is unappealing. We need different trials, different breakthroughs, and different methods to meet the requirements of our disparate diseases. Highlighting one of the biggest stumbling blocks for advocacy groups, Wright points out that if you are arguing not only over the treatment of disease but also over its cause, you are fighting on several fronts at once. Focusing on a singular purpose was a definitive marker of success for prominent HIV/AIDS groups, as it was for breast cancer activism and other specialty groups. When the goals become fragmented and people need to defend, justify, or explore the cause of disease as well as champion for various rights, something has to give.

  I wonder too about Kairol Rosenthal’s concerns about what she calls “slacktivism.” Certainly, I read impassioned blog posts about health care reform and followed exuberant Twitter feeds and Facebook messages when the legislation passed. I know people with chronic illness were excited, even transformed, by this development. There were a lot of groups and associations who publicly supported the reform, and who tirelessly made their case on economic, health, and moral grounds. If you weren’t on social media, if you didn’t read the statistics and the arguments, and if you didn’t feel connected to people who were as outraged as you were over the state of health insurance in this country, where would you find the momentum? Or, if you were someone who was active on these channels, did it seem enough to “like” the posts or re-Tweet the analysis? Have we lost a sense of urgency due to the immediacy of our message? When I think about the protests and upheaval of the Arab Spring, many of which leapt from smart-phone screens and laptops into crowded public squares, I am reminded that virtual activism is a complement to, not a replacement for, the nuts-and-bolts activism that has yielded so many successes for specific populations of patients.

  One sultry summer evening in 2008 stands out in my memory. My husband and I had traveled from Boston to Washington, D.C., to attend the wedding of one of my college friends. It was my first extended trip back to D.C. since I’d graduated, and in the time between, I’d seen the inside of yet another ICU, I’d finally been given correct diagnoses for several of my diseases, and I’d started daily chest physiotherapy and other treatments that drastically improved my quality of life. I’d attended graduate school, fallen in love, then landed an agent and a book deal. My life was full, and with more accurate information on my conditions and how to slow down their progression, I had every reason to believe I would continue to be a fulfilled, productive professional.

  I remember donning the heels I so infrequently wear, and a turquoise cocktail dress purchased for this event. I was excited for a great evening watching our friends get married and connecting with college acquaintances I hadn’t seen in years. I’d finished the complete draft of my first book on chronic illness and young adults that very morning, holing up in our hotel room while my husband checked out the National Mall. I was exhilarated, I was dressed up, I was in a good place. I passed, as far as I was concerned. From all outward appearances, and in my own head and heart in the moment, I was an inveterate member of the kingdom of the well.

  As we sipped wine and lingered over the fruit and cheeses during the cocktail hour, we struck up a casual conversation with another young couple. They were impeccably dressed and had impressive professional pedigrees. I don’t remember how the topic came up, because I know I didn’t volunteer any information, nor did I share any of my own details, but somehow, chronic illness was mentioned.

  Out of nowhere, the well-heeled young man with the prestigious degree and the crisp suit and the winning smile said something incredibly ugly—something along the lines of, he’d never marry someone with a chronic illness. Why would anyone?

  Stupefied, we stared at him and stammered some sort of pat response. My cheeks and neck were burning (they are my tell), and my normally reserved husband looked like he was struggling not to burst. We didn’t want to make a scene; we didn’t want to delve into something so personal and so vulnerable with strangers who were outrageously confident in their callousness. I looked at his fiancée, with her lithe, willowy frame, her toned, capable arms, her tanned, glowing skin. I thought about all I knew—how millions of women didn’t manifest autoimmune and chronic diseases until their twenties and thirties; how chronic illness can sneak up on otherwise healthy people without notice; how many marriages crumble in the face of the overwhelming demands of chronic illness. Good luck, I thought to myself. At the time, my silent words were lobbed toward the young woman with the dark hair and the lilac dress, the woman engaged to a man who didn’t seem to believe that people with illnesses were worth sticking around for, or investing in. May she be lucky enough to avoid what millions of other women haven’t, and won’t.

  Years later, I realize I really should have directed my internal monologue at both of them. “Chronic illness” is a phrase with no end of meanings, one definition stretched over thousands of diseases. It will seep into nearly all of our lives at some point.

  Before we dove into Plato and the plagues, before anesthesia and antibiotics, before vaccines, organ transplants, and informed consent, before we explored advocacy movements and “new” diseases, and before we saw how technology changed the way we approach the medical establishment, we met two patients: Melissa McLaughlin and Emerson Miller. A few years ago, I considered both their narratives archetypal snapshots of current-day chronic disease. First there was the female patient living with pain whose suffering is somehow less valid because her diagnoses are not as concrete, and because as a young woman, she is seen to be a less reliable narrator of her circumstances. Next, there was the infectious-disease patient whose suffering was also disparaged, but for different prejudices. The two snapshots represented inscrutable illness versus individual responsibility for behavior, two of the most pervasive themes in present-day disease, right next to each other.

  And they are archetypal snapshots, they are successful foils. But what I realize now is that their stories are much more than representations of present-day illness. Our understanding of disease and how it spreads has certainly evolved, but the stereotypes, assumptions, and challenges their narratives pose could apply to the experience of illness across the ages and across the disease spectrum. Have we failed to evolve when it comes to perceptions of illness? Are we that predictable in our fears and insecurities, or are we simply adapting to subtle patterns in the only way we know how?

  While the fundamental definition of chronic illness hasn’t changed, the scope of what is considered chronic has, and what, if anything, does that mean for the patient living with chronic illness? We’ve seen numerous reasons for the widening scope: We’re living longer because we’re not dying from communicable disease. We have better technology so we can detect and treat certain conditions earlier and more effectively, and can connect with one another and access information with greater ease. We live in an increasingly consumerist culture where both drugs and the conditions they treat are marketable commodities. We suffer from a dizzying number of preventable diseases at least in part because of unhealthy lifestyles. We are surrounded by chemicals and pollution, and live with economic, professional, personal, and political stress.

  Susan Sontag’s powerful image of the division between the kingdom of the well and the kingdom of the sick spoke to me so deeply precisely because of this widening scope. Ultimately, if more and more people dwell in this “night-side of life,” do the specific reasons for how we got here matter? I am not convinced they do.

  Since I first began writing about chronic illness almost a decade ago, I’ve clung to the uni
versals, and to the idea that the individual patient’s experience with chronic illness is in many ways a universal one. We want to feel better, even if that does not include a cure. We want to feel respected by the fast-paced society we live in, and we want to feel respected by the health care professionals whose job it is to provide the best health outcome possible. We may feel far removed from the patients of medicine’s and literature’s past, but we’re confronted with many of the same frustrations and desires. We want science to give us clues when we’re surrounded by darkness, but we do not want to be reduced to impersonal statistics. There are many pieces to our health narratives: the subjective experience of living with illness; clinical observations; environment, lifestyle, and access to health care and health information; political agendas and conflicts of interest in research and funding. More than ever, the onus is on the patient to take part in his or her narrative, to mesh the science that diagnoses and treats us with the culture and technology that has the potential to heal us.