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Thanking the Supreme Court for its ruling on the Affordable Care Act

Thanking the Supreme Court for its ruling on the Affordable Care Act

Picture of Judy Johnson
I want to commend U.S. Supreme Court Chief Justice John G. Roberts Jr. and Associate Justices Stephen G. Breyer, Ruth Bader Ginsburg, Elena Kagen, and Sonia Sotomayor for their ruling to uphold the constitutionality of the Patient Protection and Affordable Health Care Act on Thursday, June 28, 2012. Their historic decision has provided a lifeline to millions of patients with preexisting conditions, including those of us with sickle cell disease.
As a sickle cell disease patient, I count myself among the estimated 70,000 to 100,000 Americans who live with the ravages of this blood disease. I was born with a pre-existing condition, namely deformed red blood cells that I inherited from one or both of my parents. What I lack are the normal healthy red blood cells that are round and travel easily through small vessels carrying oxygen to all parts of the body. 

By contrast, the red blood cells of persons with sickle cell disease become hard, sticky and resemble a C-shaped farm tool called a sickle. These sickled cells can get stuck in small blood vessels, blocking the flow of blood and oxygen. 

It is these blockages that we fear most, because of the intense pain they cause. What we also fear is the unpredictable nature of the pain episodes, known as crises. We never know when they will strike. What we do know, however, is that these repeated pain episodes can lead to kidney disease, liver problems due to iron overload, hypertension, and avascular neurosis of the knee, hip, and shoulders; and even strokes. Sickle cell disease and their associated ailments add up to a lifelong series of expensive tests, expensive medicines, and expensive treatment. 

This is why having health insurance coverage is so important to us – we need it to help us shoulder this disease’s heavy financial burden. For years, we were caught in a Catch-22: We need insurance, but insurance companies view us as a major drain on their bottom lines and generally give us a hard time when we seek coverage. And many of us have too-high incomes for Medicaid and are too young for Medicare.

The only way private insurers will cover us sickle cell patients at a reasonable cost is if we get group coverage through our employment with a large corporation or governmental agency. Otherwise, a sickle cell patient is out of luck. If one of us does find a company that will insure us, they will charge us exorbitant premiums. We face a similar problem when we try to secure life insurance.  
Now I come to the reason we sickle cell patients are so grateful to those five aforementioned Supreme Court justices: They upheld the provision of the law known as the “individual mandate,” which requires individuals not covered by employer- or government-sponsored insurance plans to maintain minimal essential health insurance coverage or pay a penalty unless exempted for religious beliefs or financial hardship.

The individual mandate is needed to require insurers to cover those with pre-existing conditions and spread the risk among a larger pool of people. Insurers believe healthy people will not buy health insurance until they get sick, which would create a scenario under which insurers would pay out more money to cover treatment for ill people than they collect in premiums from healthy people.
As I said above, we sickle cell patients – unlike people who contract chronic diseases later in life – are saddled with an incurable “pre-existing condition” at birth. This is not our fault, but insurance firms generally do not care – we simply cost them too much. We are doomed from day one to fight not only the disease, but also to potentially battle insurance companies to cover our health care, which we view as a basic human right and not a commodity.

In my book Living With Sickle Cell Disease: The Struggle to Survive, I speak of being fortunate to have been covered under group health insurance plans while working as a public school teacher. Those plans helped me to defray the thousands of dollars of care I received while going through excruciating pain episodes.

I am grateful for that coverage. Today, I am even more appreciative that Justices Roberts, Breyer, Ginsburg, Kagan, and Sotomayor have, in effect, extended insurance coverage to all those untold thousands of sickle cell patients who were heretofore shut out of the private health insurance market. Once again, honorable Justices, I warmly thank you.


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