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OP-ED | Appreciation For The Affordable Care Act

by | Mar 22, 2012 4:00am
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Posted to: Opinion

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.

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(9) Archived Comments

posted by: sightover | March 22, 2012  7:42am

Compulsory participation in a national healthcare funding scheme violates everyone’s civil rights (incl. future generations), is economically unsustainable, and will not improve the quality of your healthcare. The baby boomers have ruined us with their short-sightedness and narcissism. We should be rolling back socialized medicine to lower costs and increase access, not setting it in stone.

posted by: GoatBoyPHD | March 22, 2012  10:30am


As Massachussetts was able to show under RomneyCare,  the universal right to coverage is not dependent on the Federal Government. And it shouldn’t it be.

It’s a question of priorities: in CT, the Democrats are interested in protecting Publc Sector workers and maintaining their corrupt pension culture (as in haz duty pensionsabuses and the recent Adamowski pension legislation).

Universal medical coverage isn’t a big thing with the Public Sector mob.

They come first. 

CT could pass that as a piece of state legislation now as a precaution and as symbolism.  That gives you an idea of how little interest universal right to coverage generates: even a symbolic passage that would only have teeth if the SCOTUS votes down the mandate (and they will) fails to get any backers.

Passing an 85% Medical Loss Ratio floor, universal right to coverage, purchase mandate, and a maximum 200% policy price variance between demographic groups should be a no brainer in CT.

posted by: TomSwan | March 22, 2012  11:00am

Great job Jennifer

posted by: SocialButterfly | March 22, 2012  1:02pm

GoatBoyPHD: Although RomneyCare is not dependent on the federal government—“ObamaCare IS.” Vote for Mitt Romney in the coming election if he is the pick to face Barack Obama.

“Socialism” will end with Obama’s defeat.

posted by: lkulmann | March 22, 2012  3:56pm

Unfortunately, if The Department of Social Services is the agency that administers this program it will not comply with federal laws. If the ACA is not voted in, CT will probably resurrect Sustinet. That will also be administered by CT DSS and therefore incompetently implemented. Either way, the healthcare will be substandard in CT. Its just an ongoing pattern that is well documented. IF CT becomes a self insured state it does whatever it wants like it or not…who enforces federal regulations?? CT that’s who…scary.

posted by: middleoftheroad | March 22, 2012  7:10pm

Couldn’t have been better said, Jennifer.

posted by: jenand | March 22, 2012  7:14pm

From one Jennifer with M.S. for more than 30 years, to another Jennifera (though I know not your malady) who knows what I’ve been going through, I applaud your awesome piece on the celebration of the new law - I am with you, and offer a big pat on the back. Now, I might have to write an article, to help keep this issue in the light.

posted by: Paul Wessel | March 24, 2012  5:50am

Thank you, Jennifer.

posted by: AnHonestQuestion | March 30, 2012  12:00pm

To all those people who have a problem with the ACA and providing health insurance to people with chronic illness…would you prefer us not to have insurance? As most of us can’t afford to pay out of pocket, this expense would eventually be paid for by taxpayers. Please show me a better way to deal with this.
Some people say that insurance should be for catastrophic use (like heart attacks or cancer) only and pre-existing illnesses should not be covered. Seriously? And those with chronic illnesses like diabetes should not be covered? Again, who would end up paying their costs? Because “regular joes” can’t afford to pay for their medications and pay their rent too. So guess who pays for it? Taxpayers.
So again…show me a better plan.
If you don’t have a better idea, could you please stop complaining?