I Have a Chronic Condition and I Can?t Get Insurance

sickle cell makes if difficult to get coverageEight years ago Jon?ette Jordan, 33, said good-bye to her stable job with an investment firm to start the business she believed to be her calling: Weddings by Jon?ette, an event planning company in Walnut Creek, California.

Entrepreneurship always comes with risk, but for Jon?ette the risks were physical as well as financial. That?s because leaving her job also meant losing her health insurance coverage?no small detail for someone with sickle cell anemia. This genetic disorder causes the body to produce abnormal, crescent-shaped red blood cells that clog up the blood vessels that lead to the limbs and organs, causing infection, organ damage and paralyzing pain.

Jon?ette tried to purchase coverage independently, but insurance companies either denied her outright because of her pre-existing condition or quoted fees higher than she could afford to pay. So today Jon?ette is living without any health insurance coverage and pays out of pocket for all her care. That could change if health care reform passes Congress this year.

Here is Jon?ette?s story:

When you are born with an illness like sickle cell, you look at life a little bit more seriously than somebody who is ?normal.? The average life expectancy for women with sickle cell when I started my business was 40. So, I said you know what? That?s like 15 years away. Why waste time?

I knew I was taking a risk. I went quite a few years without pneumonia until earlier this year, when I?ve had it twice. As for the pain, I have medication but I try not to take it that much because it is so expensive. You hoard your pills for when you are really, really in pain, like when you can't move your arm or your legs or you can't walk or sit up.

Depending on the year, I could spend between $8,000 and $10,000 on medical care. Medication is one of the costs. The other is my doctor. She won?t set up a payment plan. You have to pay right there before she will even talk to you. I haven?t been to the eye doctor in years, which is horrible for somebody with sickle cell, but it is expensive.

If I have a really bad episode, I am going straight to the hospital. You pay $250 just to walk into the emergency room. I can have a really bad episode and not even be admitted to the hospital and have darn near $2,000 bill by the time I get home.

I had pneumonia earlier this year and the only reason that I even went to the emergency room was that I had this really sharp pain in my lower back on the right side. At that point my sister hadn?t even been dead for six months (she died from complications of sickle cell). Her kidneys failed two days before she died, and I thought, ?Well shoot, maybe this is my kidneys.? So I was just kind of panicked.

They sent me home with antibiotics for the pneumonia, which cost $125 dollars for 10 pills, by the way. The antibiotics didn?t work and it was getting worse. I went back to the hospital and the ER doctor said, ?You have sickle cell. We should have kept you. We need to admit you.? And I said, ?I can't be admitted. I don't have insurance. I can't afford it.? And he said, ?If we don't admit you, it?s going to spread and you will probably die.? My parents were there and my dad said, ?Do you want to die? Who cares about the bill? You know you need medical attention.? So after arguing with my parents and the doctor for about an hour, I decided to allow them to admit me. The hospital bill was $7,000, which I am still paying off.

I have shopped for health insurance, but it?s been closed doors left and right. I can?t purchase an individual policy because of my pre-existing condition. Every single service provider that I contacted has the rule that if you are a small business you have to have at least two full-time employees. I only have part-time employees.

Most people I tell about my situation are outraged. Some people that say, ?Hey you know you should go and fill out paperwork for MediCal [California?s Medicaid program],? but I would have had to bend the truth a little bit to qualify and I don't believe in doing that.

What I want is for anybody who wants insurance to have insurance. I want people to be allowed to receive coverage from any company of their choosing at an affordable price.

NEXT: How would health care reform help Jon?ette?

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