Sandy Butler, University of Maine, and Luisa Deprez, University of Southern Maine
Originally published in the Bangor Daily News on October 24, 2014.
Sheila Scott has lived in fear of kidney failure for 20 years. Then, for the past three months, she lived with the fear that goes along with not having health insurance. She’s still afraid her health coverage won’t last.
Scott, 52, of Richmond was diagnosed with kidney disease at age 32 and had a kidney transplant eight years later. Ever since, she has depended on medications she’ll have to take for the rest of her life to ensure her body doesn’t reject the transplanted kidney.
“One of my biggest fears in having a transplant was not being able to pay for the meds,” Scott said. “And everyone was like, ‘Oh, don’t worry.’ You know, ‘You don’t have to worry.’ And here I am worrying.”
That’s because in August, Scott joined the ranks of thousands of Maine residents who have lost their health coverage through MaineCare over the past year as a result of state budget cuts. MaineCare is Maine’s version of the federal Medicaid program, which offers health coverage for people with low incomes and disabilities.
Scott recently received notice that her coverage would be reinstated, though the notice didn’t explain why. But for three months, she joined nearly 35,000 Maine people, the majority of whom work, who lost coverage as a result of the budget cuts and Gov. Paul LePage’s vetoes of legislation that would have allowed Maine to accept federal funds set aside through the Affordable Care Act to close the “coverage gap” for people with low income. Those people are not eligible for subsidies to help them afford private insurance. Not accepting the federal funds meant many low-income adults — working people like Sheila — were cut from MaineCare and lost their health care coverage.
The people who lost coverage at the start of the year fit into two categories: parents who earned between 100 and 133 percent of the federal poverty level and adults without dependent children. None of them earned more than $11,670 annually for a household of one. Scott likely qualified for Medicaid as part of this latter category.
It’s unknown to Scott and those who advocated for her continued MaineCare coverage why the Department of Health and Human Services cut off her coverage in August, rather than in January when other childless adults lost their coverage. It’s similarly unclear why she received notice that her coverage would be reinstated.
A DHHS spokeswoman said the department can’t comment publicly on specific cases. It’s possible, however, that the department has determined Scott qualifies for coverage due to disability.
“There are a variety of reasons why an individual could lose coverage and then regain it,” DHHS spokeswoman Sarah Grant wrote in an email. “For example, if the department requests information and the client does not provide the information, their case would close. If the client subsequently provides the information, the case could then be reopened.”
Scott first qualified for MaineCare more than 20 years ago as a low-income parent with dependent children. She kept her coverage after she became disabled due to her kidney disease diagnosis. After the transplant 12 years ago, Scott returned to work and stopped collecting the Supplemental Security Income she had been receiving as a result of her disability.
Though she stopped collecting her disability-related income, she continued to qualify for MaineCare until she lost it in August. The loss of health insurance coverage presented life-threatening consequences for Scott. How would she afford the medications she needs for her kidney?
Without MaineCare, she couldn’t afford them. She was able to receive some assistance from the Kidney Foundation, but the foundation paid for a substitute medication. “I just had to swap medications because I couldn’t find anyone to cover [my previous prescription].”
She is not certain yet whether the new medication is working properly because she has not been able to have the needed blood test to check that out.
That would involve seeing a doctor, and Scott had to stop going to the kidney specialist she has seen for years because she couldn’t afford those services without MaineCare. “I have a lot of fears, because I don’t want to go back on a kidney machine,” she said. “I don’t know how I did it as long as I did. My kids were young, and I just needed to.”
Scott’s two sons are grown now and have children of their own. She helps take care of her grandchildren and works 20 hours a week as a cook at a market in Richmond. She makes $8.75 per hour. She lives alone in a small, one-bedroom, rental house and struggles to make ends meet.
Maintaining her health is the priority in Sheila’s life, and losing MaineCare scared her — “especially after years of taking care of myself,” she said. “I don’t drink. I don’t smoke. I don’t do drugs. I’ve taken care of myself to keep this kidney.”
Without coverage, Scott found herself neglecting other health care needs. “My knees have been swollen for two weeks now,” she said recently before she found out her coverage would be reinstated. “I see my primary care doctor on Thursday, but I couldn’t afford to go to two [other] doctors and I don’t even know if I can get x-rays or anything. You know, it is just the wrong timing. My condition is never going to get better, because of what I have.”
Some days, Scott had to miss work as her health has deteriorated. She knows this means a decrease in much-needed income but says, “Since my leg’s been bothering me, I had to call out because it hurt too much to be on it. I had worked Friday and Saturday, so I called out Sunday.” When her boss asked her if she needed to stay home the following week, she said no, despite her ongoing pain. “I can’t afford to because I have meds to pay for next week, and there is no way to pay for them.”
Scott also suffers from degenerative disc disease, type II diabetes, severe arthritis and cataracts. She has begun to look into getting disability benefits again, but for now she works at her physically demanding job.
Without MaineCare, Scott lived in fear of what would happen if she couldn’t afford the medications and doctors’ appointments she needs to maintain her health. “Before you do a transplant, make sure you have good insurance, because it is not easy,” she warns others with kidney disease. “Make sure you are going to be able to keep it, because you have to be on these meds for the rest of your life. You can’t just stop them.”
Scott still worries her MaineCare, while reinstated, won’t last.
If Maine had accepted the federal funds to expand MaineCare this past year, Scott would not have gone without coverage. Maine can still accept the federal funds to close the “coverage gap” so Scott and nearly 70,000 Maine people can gain coverage.
Scott said she hopes a new Legislature and governor will agree to accepting the federal funds following the Nov. 4 elections so she and many others in Maine can rest a little easier knowing they can access the health care they need to remain healthy, continue working and taking care of the children and grandchildren they love.
Sandy Butler is professor of social work and graduate program coordinator in the School of Social Work at the University of Maine. Luisa S. Deprez is professor and department chair of sociology and women and gender studies at the University of Southern Maine. They are members of the Maine Regional Network, part of the Scholars Strategy Network, which brings together scholars across the country to address public challenges and their policy implications.