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Lack of insurance puts family in bind
Leukemia patient given government runaround
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Government safety net programs aim to protect families during tough times – before they fall into financial despair.
Local resident Stephanie Davis says the safety net hasn’t been there to catch her fall. She was diagnosed with chronic myelogenous leukemia (CML).
“I’ll have this the rest of my life,” said Davis. “I can’t work so my insurance ended Jan. 1. They offered me COBRA, but it's $600 a month. I’m on medical leave from work and they are talking about cutting me off. If that happens, we will only have my husband’s income to live off. We moved in with a relative so he wouldn’t lose his car. We couldn’t afford rent and a car.”
CML is a cancer that starts in the bone marrow and causes an uncontrolled growth of immature cells that make a certain type of white blood cells called myeloid cells. The diseased cells build up in the bone marrow and blood. Cause of CML is related to an abnormal chromosome called the Philadelphia chromosome. Most often it occurs in middle-age adults and in children.
Davis’ problems began last year while working at Amazon in Murfreesboro. She started experiencing unexplained medical problems, such as dizziness, weakness, passing out and headaches. She was placed on medical leave.
“It got so bad I had to go to the emergency room,” Davis said. “My white blood cells were 40,000. It’s supposed to be 8,000. They told me I needed to see an oncologist. I did that and went through all the tests. I spent Christmas in Saint Thomas. It wasn’t the Christmas we wanted, but we tried to make the best of it.”
An oncologist specializes in and manages the care and treatment of cancer. He diagnosed Davis with CML, without mention of remission, and leukocytosis due to the high white blood cell count.
The couple has attempted to find health insurance to cover the cost of treatment.
“It has been a horrible experience,” said Davis, of the insurance hunt process. “I’ve applied for everything, including the Marketplace. I called the American Cancer Society. They sent me to Medicaid and Medicaid told me no. TennCare told me I didn’t qualify because I didn’t have breast cancer or cervical. I told them I had cancer of the blood, which means there is cancer in my breasts and in my cervix – leukemia is throughout my body. I’m just frustrated. It’s upsetting to think people don’t care.”
According to the state’s website, there are several different groups of people who may qualify for TennCare Medicaid, and each group has different income limits.
Davis’ only possibility for insurance coverage is to apply for disability and get an SSI check.  Davis says she has an appointment this month to fill out the application.
“Once you apply, they are allowed six months to decide,” said Davis. “If it takes them six months, what am I supposed to do until then? I have an oncologist willing to treat me, but I can’t afford any of the medications. One of my medications is $280 a month. Another medication is $240 a month. How am I going to get my medicine filled? If I can get the cancer medication from the free drug program, I will still be alive but the side effects from treatment will hospitalize me without those medications.”
Usually the first treatment of CML includes medicines that target the abnormal protein made by the Philadelphia chromosome. These medicines can be taken as pills. Sometimes, chemotherapy is used first to reduce the white blood cell count if it is very high at diagnosis. The blast crisis phase is very difficult to treat. This is because there is a very high count of immature white blood cells (leukemia cells).
The only known cure for CML is a bone marrow transplant, or stem cell transplant. Most patients, though, do not need a transplant because the targeted medicines are successful. When the signs and symptoms of CML go away and blood counts and bone marrow biopsy appear normal, the person is considered in remission. Many persons can remain in remission for many years while on medicine.
Davis fears she won’t get the proper treatment and her prognosis isn’t as bright.
“I have kids. I don’t want to die. If I can get help, I will have this for the rest of my life but at least I will be alive,” said Davis.
Family members are attempting to come up with a fundraiser in an effort to help financially. However, at this time, there is not one.
If anyone would like to help, the address is 19 Brandywine Street, McMinnville, TN, 37110.