Missourians with rare disease struggle to receive full Medicaid coverage
In Centralia, a two-year-old suffers from the rare and painful ‘butterfly disease.’ Hayden Esser’s Butterfly Disease, or epidermolysis bullosa, makes his skin fragile and easily broken. His family has fought with Missouri’s Medicaid program, MO HealthNet, for over a year before Hayden’s treatment was fully covered. KBIA’s Maura Healy tells us how Medicaid in Missouri leaves families of children with rare conditions particularly vulnerable.
Jaden Hofs could barely breathe.
Severe allergy symptoms caused blockages in his airways that could have been easily treated with a combination of prescription drugs that insurers would cover for patients with a diagnosed allergy.
But Jaden’s tests came back negative.
Jaden has a rare combination of three chromosomal mutations that cause a series of debilitating symptoms — sinus blockage being the least of them. A severe seizure in 2014 still affects his ability to walk and talk. He is mostly reliant on a wheelchair and has a difficult time remembering even close family members’ names. Physicians linked his chronic sinus blockage to the mutations, but Jaden’s condition does not have a name.
Karen Edison, director of the MU Center for Health Policy, said rare disease patients face barriers to getting care reimbursed by MO HealthNet, the state’s Medicaid program. Because of how public insurers determine what is and isn’t covered, families applying for coverage for people with rare illnesses face more scrutiny than those with well-known conditions.
This means families are left without answers — or worse, without coverage — for longer periods of time while the government assesses their cases.
When Laura Wylesky could not provide HealthNet with a diagnosed disease, she was left having to pay for many of Jaden’s necessities out of pocket. She said she has acquired more than $25,000 in debt paying for his care.
“I chose my decisions for my grandson because I love him, and I would do anything in the world for him,” said Wylesky, who took custody of her now 12-year-old grandson in 2011. “But financially, [I’m] drained.”
HealthNet’s reimbursement model is based on diagnosis rather than on symptoms, Edison said. When the causes of ailments aren’t apparent or well understood, Edison said it can be hard to get care covered.
Though physicians advocate for their patients to public insurers, the government may be less understanding of the treatment an illness requires if they do not see it often.
“They might not have any other patient that is in their network that they’re caring for that has this disease,” said Kari Martin, a pediatric dermatologist at the University of Missouri Women’s and Children’s Hospital. “Or, if so, it’s very few. So this is new to all of them.”
This means that while there may be viable treatment options for rare diseases symptoms, getting those treatments covered may be more difficult than if those same symptoms were caused by a more common diagnosis.
Though this can put more stress on families, the government does need a way to control costs. After a patient is considered eligible for HealthNet, the department assesses which services it will reimburse, Missouri Department of Social Services spokeswoman Rebecca Woelfel said in an email.
“Whenever a participant has an emergent or precarious health situation, [HealthNet] works to ensure the health and safety of the participant,” Woelfel said.
The Department of Social Services oversees HealthNet.
“Constant stream of paperwork”
Even if physicians identify a disease, getting patients’ needs documented can be especially hard with rare illnesses.
Four-year-old Jordyn Conn was diagnosed with Alexander disease after her parents noticed she had frequent tremors and trouble walking. The neurodegenerative condition results in delayed physical and psychological development, as well as increases the chance for frequent seizures and other potentially fatal neurological issues.
It took three years for the Conn family to get Jordyn approved for HealthNet, her mother Amber Conn said. Jordyn was initially denied coverage because Conn’s family income was too high. However, she was ultimately accepted under a state waiver that allows children with severe developmental delay to access public healthcare.
“Just a few things haven’t been [covered by HealthNet], but for the most part, all of the medications and all of the therapies have been covered,” Conn said. “We’ve really been able to do a lot more for her without having to worry so much about finances.”
The Conn family may have gotten coverage, but keeping it is a lot of work. Conn said her daughter sees some specialists solely to get documentation to prove the necessity of Jordyn’s care to state insurers. Conn links this to the rarity of her daughter’s disease.
“It’s frustrating because we already have a long list of doctors, and they’ve already written letters about her diagnosis,” Conn said. “Medicaid is requiring more documentation that is even more specific. It has just been a constant stream of paperwork.”
In Missouri, HealthNet does not cover experimental treatments, nor does it cover the use of drugs that are not approved by the Food and Drug Administration.
When not every rare disease has an FDA-approved treatment, Edison said it can be hard for families to find affordable care options.
Physicians often suggest patients with rare diseases enroll in experimental trials. Though these treatments are not proven effective, receiving experimental treatment is a way to get some care without paying for it.
“It may not benefit you, but it will benefit other people, but it might benefit you,” Edison said. “And so we really try to encourage people to be open to clinical trials because that’s how we learn.”
Jordyn has participated in a study run out of the Children’s Hospital of Philadelphia for the past three years. Though her family pays for the trip out of state, once they get to the site, she receives a series of physical and psychological assessments — including an MRI and lumbar puncture test — all covered by the research study.
“We have gained so much knowledge, and she has improved immensely from going out there,” Conn said. “They just have so many different methods to try and help her that local neurologists have never even heard of.”
Better care elsewhere
Jaden is breathing easier these days, and his grandmother is no longer paying for his allergy medicine out-of-pocket. Wylesky and Jaden left their home outside Lebanon, Missouri, at the beginning of last year and moved to Ohio, where he is receiving more specialized care and comprehensive public insurance coverage.
“Ohio took care of the issue over the phone so everyone can communicate…with them so we can work on getting him what he needs,” Wylesky said. “Having that type of approach makes our lives easier in the rare disease community.”
After almost seven years of caring for her grandson, Wylesky continues to search for answers and fight for his treatment coverage.
“You’ve got to be vigilant,” she said. “It’s a matter of life or death.”