If you don’t have a chronic illness, you don’t really get it. You can’t. Chronic illness is different from illnesses that kill you and illnesses from which you recover. If you have a chronic illness, it never ends. Although there are thousands of chronic illnesses, there are several characteristics that are common among us:
• Chronic illnesses are largely invisible. We’re not in wheelchairs (well, not most of us) and, as a general rule, we don’t look sick, at least all the time.
• We are in pain much, if not all, of the time. Joints ache. Muscles strain. Lying flat on a bed, there is throbbing. 24/7. Pain.
• We experience a fatigue that those without chronic illness can’t really imagine. It’s not sleepiness. Indeed, sleep does little to alleviate it. I call it Chronic Illness Fatigue. It’s beyond bone tired. It’s overwhelming and looks a lot like depression. But it’s not a mental illness; it’s a real symptom of all chronic illness.
And none of us – not one – can purchase individual insurance in most states. Not for any amount of money. We are shunned, like lepers. We are the cast-offs. We are second class citizens. And so we get sicker, until the cost of our care falls to the government when we land in a hospital, or until we have no alternative but bankruptcy. The sicker we get, the harder it is for us to hold onto our jobs, and whatever insurance we get through our employers. Without insurance, when our disease flares, we lose everything.
The Affordable Care Act would change that. Starting on January 1, 2014, insurers no longer would be allowed to turn applicants down on the ground that they have a pre-existing condition.
This is the most important civil rights victory for people with chronic illnesses – ever.
Sure, the Americans with Disabilities Act is important – but for people with largely invisible chronic illnesses, it is of limited utility. Despite the ADA, you can be fired for absenteeism, even if that absenteeism is due to a disability, unless attendance is not an essential function of your job, which is rare. The biggest problems the chronically ill face in the workplace are lateness and absenteeism – consequences of the ebb and flow of our diseases. The Crohn’s patient who, running late for work, doesn’t stop for one last trip to the bathroom, only to fail to make it to work without soiling herself. The rheumatoid arthritis patient who has to go for an infusion of medication every four to eight weeks, missing a day or two each time. The multiple sclerosis patient in a flare that makes it difficult to shower and dress as quickly as usual. If we are lucky enough to hold down a job for a year, we can get job protection from the Family and Medical Leave Act, but that doesn’t apply to small employers, and so many patients with chronic illnesses can’t hold a job for twelve months because we are fired serially due to absenteeism. These laws just don’t do as much for people with largely invisible chronic illnesses as they do for people with visible disabilities.
But universal guaranteed issue insurance – insurance that must be offered to us even if we have a pre-existing chronic illness – now, that changes the whole game for us. We could change jobs without worrying about keeping our insurance. We could start our own businesses without the fear of what happens when our COBRA runs out. We could go back to school or get divorced. The elimination of pre-existing condition exclusions is about nothing less than equality, solvency, life and death.
The Affordable Care Act’s individual mandate, requiring that everybody purchase insurance, even if they need a subsidy to help them do so, enabled Congress to require insurers to accept people with pre-existing conditions. If insurers have to accept people with high health care costs without premiums going through the roof, goes the argument, we have to drive healthy people into the pool, too. The individual mandate is so closely tied to universal guaranteed issue insurance that the Justice Department has conceded in its brief to the Supreme Court that, if the individual mandate is struck down, so, too, must the guaranteed issue provisions be eliminated. Equal treatment of people with chronic illnesses will be lost – and that will happen as the result of a conversation about the individual mandate, without even an acknowledgement of what that loss means to those of us with chronic illnesses.
I will never forget the day when President Obama signed the Affordable Care act. March 23, 2010. I watched, with tears streaming down my cheeks. That was the day when my civil rights as a person with a chronic illness were first recognized by the United States. That was the day when I first saw the glimmer of equality on the horizon.
January 1, 2014. For two years now, I have been telling people with chronic illnesses to just hang in until then. We find them a free clinic or free prescription drugs, a patchwork quilt of health care until 2014. Hold on. The end is near. You will be fine once we get to 2014. Every time I say it, I feel a tightness in my chest. What if the Affordable Care Act doesn’t make it to 2014?
Let’s be clear about what’s at stake in the Supreme Court case: Nothing less than the equal treatment of many millions of Americans with chronic illness. If we lose this now . . . well, it’s just unthinkable.
Jennifer C. Jaff, Esq. is the founder and executive director of Advocacy for Patients with Chronic Illness, Inc.