At the moment, however, Shondrea is fighting for her own life. Almost eight years ago, at age 21, she was diagnosed with lupus, a chronic, autoimmune disorder that causes inflammation in the body’s organs. Although she was able to control her symptoms for several years through expensive treatments and medications while on private insurance, her situation changed significantly under the stress of college combined with long, late-night shifts at the hotel. Her body exhausted, Shondrea’s organs began to break down.
Beginning in late 2008, Shondrea began having difficulties breathing, and fluid started accumulating around her heart. After going to the hospital more than once to have the fluid drained, she underwent surgery to implant a device around her heart to reduce the accumulation of fluid. Since her surgery, she has been regularly seeing several specialists who monitor her condition and are treating her with lifesaving medications. Lupus has also attacked Shondrea’s lungs and kidneys, and the weakening of her lungs makes her unable to walk or exercise.
Due to her current medical condition, Shondrea cannot return to school or work. She was deemed disabled in 2009 and lives on just over $1,000 per month in SSDI. Because Shondrea no longer receives SSI payments, she is losing her TennCare. She has a hearing next month, but the state’s rules make it very hard for a childless adult, like Shondrea, to be on TennCare.
If Shondrea loses TennCare, she has few health insurance options. Shondrea must wait two years from when she was determined disabled – until mid-2011 – to qualify for Medicare. This two year gap leaves people with severe disabilities out in the cold when they need health insurance most. In the meanwhile, Shondrea requires regular visits to her specialists and medications. If she stops treatment, her doctor has given her a life expectancy of fewer than ten years.
Private health insurance will not cover Shondrea because she is uninsurable. Her only other option is a high risk pool – either AccessTN, the state’s health insurance for residents who are uninsurable due to pre-existing medical conditions, or a new federal high risk pool. AccessTN is less expensive, and yet Shondrea would still have to pay a monthly premium plus a deductible, a financial stretch on her fixed income.
Not only is Shondrea in the middle of a two year gap, waiting for Medicare coverage to kick in, she’s one of millions of low-income adults who are waiting for 2014, when they will qualify for Medicaid. One provision of the Affordable Care Act mandates that all persons – including those, like Shondrea, without children – who earn less than 133% of the Federal Poverty Level are eligible for their state’s Medicaid program, such as TennCare. If that law were already in effect, Shondrea would not be facing the possibility of being disenrolled from TennCare. For Shondrea, and many others like her, health care reform cannot come soon enough.
