Kelly Smalley lost her health insurance over a year ago when her son turned 19 years old.
In order to qualify for Medicaid in Oklahoma, people need to be a parent or guardian to someone no older than 18, have a government-recognized disability, or be over 65 years old in addition to earning below the federal poverty level. Smalley, who’s a 47-year-old single mom, is still responsible for her son; he was born with spina bifida and is routinely in and out of the hospital. She also has a disability; she was recently diagnosed with multiple sclerosis but has been denied disability status four different times. She says it’s because she wasn’t able to document her illness well enough without insurance.
Smalley doesn’t neatly check all of Oklahoma’s eligibility boxes, and so doesn’t qualify for Medicaid. The combination of having to care for her son and herself has meant she can’t work and get employer-based insurance.
“If I hadn’t started having seizures and if I didn’t have my own medical issues, when he was older and I knew that he didn’t need me as much, I would have definitely gone back to work,” said Smalley.
If Smalley lived in any of the 37 states and Washington, D.C., that expanded Medicaid eligibility under the Affordable Care Act (ACA), she would have health coverage. Now, she and other Oklahomans are trying to add Medicaid expansion to the ballot in 2020.
“Somebody should do something,” Smalley said. “I mean, someone needs to. I figured it would give me a purpose.”
Attorneys representing Smalley and another Oklahoma resident, Erin Taylor, filed a petition last Friday to make that happen. Taylor works in the advocacy and public policy sector for families that have children with disabilities or serious illnesses. But her work is also personal: Taylor’s son is on Medicaid because he has a significant medical condition. She has to supplement her employer-based private insurance.
“Let me tell you, Medicaid is the financial lifeboat in our family. My son is on transplant medication and the deductible on that and our out-of-pocket cost is — it would basically eradicate my salary if we didn’t have that Medicaid as secondary,” she said. “I feel like we should help all families that are facing those kinds of health care costs.”
Organizers need nearly 178,000 valid signatures for Medicaid expansion to make it on the 2020 ballot.
Utah, Nebraska, and Idaho have all successfully expanded Medicaid by ballot. But GOP-controlled legislatures have largely undermined those initiatives since then: Utah lawmakers scaled back the program in March, and the state is now covering roughly 60,000 fewer people. Nebraska lawmakers are delaying implantation until 2020, and Idaho is adding work requirements.
“For right now, what we want to have happen is for the legislature to decide if they are going to move forward with a [Medicaid expansion] bill and to give the legislature time to do that before we [really take the campaign to the public],” Taylor said.
Oklahoma lawmakers are still mulling over such a bill. Gov. Kevin Stitt (R) told The Oklahoman he would oppose the ballot initiative if it calls for straight Medicaid expansion — meaning everyone who earns below 138 percent of poverty will qualify for Medicaid, no strings attached.
Taylor, who visits the state legislature a lot for her advocacy, is confident lawmakers will expand Medicaid, saying they were moved by citizen testimonies. However, she worries that pending work requirements will undermine the expansion, as was the case in Arkansas where thousands of people lost their insurance. Oklahoma lawmakers have already formally asked to condition Medicaid eligibility on work. The Trump administration has yet to approve the request.
Anywhere between 160,000 to 225,000 people could gain coverage if Oklahoma expands Medicaid. Smalley, for one, would no longer have to rely on the pharmaceutical company Bayer for financial help through its patient assistance program to get her medication.
Before she was booted off the Medicaid rolls, Smalley was able to see a doctor regularly because Medicaid paid for transportation to the provider’s office and the visit itself. If Oklahoma expands Medicaid eligibility, she could see a specialist who could prescribe her new medication.
She said she’d like to try the drug Ocrevus, which costs more than $123,000 for two outpatient infusions.
“Maybe I would feel a lot better — I would be less sick. I could get better treatment for my [multiple sclerosis] because the treatment I’m getting right now I don’t think it’s working that much anymore,” said Smalley.