Teara was born with Sick Cell Anemia-SS, the most severe form of sickle cell. People with this form of sickle cell often experience severe bouts of joint and bone pain due to lack of oxygen in their blood. When it becomes debilitating, it is referred to as a crisis. Teara said most of her childhood was spent in the hospital, her mother fought for her to get on Medicaid and did not receive it until she was thirteen years old. Her mother lost many jobs as she was at the hospital so often with Teara as a child. Now as an adult, maintaining physical health with this disease is only one component of Teara’s health journey as she has to spend much of her time and energy navigating her healthcare coverage.
Every time Teara has a crisis, she has to go the hospital. Hospital stays can last from a day or two to as long as a month. Teara used to be in the hospital about once or twice a month and received blood transfusions every three months but is now down to five-eight hospital visits per year and receives blood transfusions about three times a year. The severity of her illness makes it difficult to maintain a full-time job. In order to keep her Medicare and Medicaid benefits, Teara has to monitor her work hours carefully so she does not lose her healthcare that is imperative to her health.
Teara worked as a CNA for many years and during this time she lost her social security benefits because she was making slightly above the maximum income rate which was $1,010 per month. During the five years she was uninsured, she had many hospital visits including a crisis that left her hospitalized for three weeks. She had a severe bone crisis in her feet and could not walk. The final bill for this visit alone was $15,000. After months of hassle trying to get her Medicaid and Medicare back, she was eventually able to get some financial assistance on the bills but she still had thousands of dollars left to pay on this bill and the many others that had accrued over the three years she was not covered.
Finally, Teara had to declare bankruptcy in 2014. This wiped away most of her medical bills but Teara still has about $3,000 in medical bill debt, in part, from six months ago when she was briefly cut off from social security because the social security office noticed a mistake on their end when they overpaid her in 2012. Because of an oversight that was the fault of the social security office, she was suddenly left without health insurance 6 years after a clerical mistake was made. During this time she had a crisis and wound up with the hefty bill. As Teara states, “no one tells you its going to be like this. No one tells you. I am lucky to have my mother by my side helping me with all of this paperwork and helping me navigate this system. If I hadn’t had her, it could have gone so wrong”.
Teara is in school studying business management and social work. She plans to create an organization for people with sickle cell anemia, she dreams of making this disease less socially and financially debilitating for others.