Health Reform Is A Civil Rights Issue

March 23, 2010. I watched on television, tears streaming down my face, as Barack Obama signed the health reform law one letter at a time, to maximize the number of signing pens. The moment was full of emotion for me. Finally, there was recognition that people with pre-existing conditions have become second-class citizens in America when it comes to getting health insurance. Finally, America was reaching a hand out to us, the chronically ill.

For me, health reform is a civil rights issue. Those of us who have suffered the misfortune of getting sick have burdens to bear that healthy people don’t. I have had to choose jobs based on the availability of health insurance. I spend thousands of dollars on deductibles and copays and items not covered by insurance every year. Millions of families have had to file bankruptcy to discharge medical debt. Way too many people are forgoing care because they can’t afford it – even those with health insurance struggle to pay deductibles, copays and coinsurance.

Every day, I talk to people who are horribly ill and who cannot get care because they don’t have insurance and can’t get insurance. A family with two little girls with Crohn’s disease that earns too much to qualify for government-funded care, who, before health reform, could not get insurance due to pre-existing conditions. And even those who have insurance had, before health reform, crippling limits on their coverage. A woman needing a heart transplant called me; her policy had a benefits cap of $200,000. What could she do?

Health reform has changed all that. Lifetime caps on benefits are a thing of the past, and annual caps are being phased out. Pre-existing condition exclusions for children are prohibited; adults follow in 2014. And there’s a new high risk pool for people with pre-existing conditions who can’t get insurance elsewhere. These and other protections that have taken effect during this first year of health reform already have improved access to insurance and, thus, to care.

This is about so much more than dollars and cents. The chronically ill are the invisible victims of the pre-reform status quo. We may not look sick, and so our needs too often are forgotten. We are the equivalent of the homeless sleeping under bridges, out of the way of the public eye, suffering desperately, trying to hold onto the job that provides us with the insurance that is our lifeline. Our doctors resent the amount of time we take. Insurers hunt for excuses to cancel our policies. Our friends and family too often think we are exaggerating because pain is invisible, fatigue is invisible, our illnesses are invisible. We were invisible.

No more. Health reform has begun to change the way we look at chronic illness. With an emphasis on care coordination through mechanisms like patient-centered medical homes, health care is being redesigned to meet our needs. Insurers in every state, and health plans sponsored by every employer, will have independent reviewers evaluating our appeals from noncoverage decisions so those of us with rare diseases will have a fair chance at getting the medication we need even in the absence of large-scale clinical trials.

But most of all, the elimination of pre-existing condition exclusions makes us equal. We will not have to scrounge for whatever coverage we can find. We will have the same options as healthy people. Yes, this comes at a price: the individual mandate. In order to cover people with pre-existing conditions at affordable rates, healthy people have to be in the pool to spread the risk. But just as allowing African-Americans a seat in the front of the bus meant some white people had to sit in the back, so, too, does eliminating pre-existing condition exclusions mean some healthy people will have to change their behavior. America has made that sort of bargain many times in our history in order to give the disempowered a leg up. Is it so wrong to do the same for us, the chronically ill?

On March 23, 2010, President Obama answered that question. We no longer are the second-class citizens of the health care system. When the new law is fully implemented, we will have the same right to purchase health insurance as healthy Americans.

Martin Luther King, Jr. said: “Of all the forms of inequality, injustice in health care is the most shocking and inhumane.” Health reform represents an end to that injustice. And so I celebrate the anniversary of the signing of the health reform law. We have overcome. Jennifer