Hi-Line toddler is youngest to be diagnosed with rare autoimmune disease | State and Region
Jamal Bets His Medicine rolled over on his mother’s lap to slap his hands on the doctor’s office table. Though decked head to toe in Spider Man gear, Bets His Medicine found a newfound love for Mickey Mouse during his emergency stay at Colorado Children’s Hospital.
Bets His Medicine, 2, is believed to be the youngest ever to be diagnosed with Churg-Strauss syndrome, an extremely rare autoimmune disease. Out of a million people, only two to five adults are diagnosed with it each year.
“This normally presents in adults. So we don’t normally see that even in older children…at least in the known medical literature,” said Dr. Jeremiah Lysinger, a pediatrician at the Billings Clinic.
Besides being a medical anomaly, Bets His Medicine and her family are Hi-Line on the Fort Peck reservation. It’s a five-hour drive from their Fort Kipp home in Billings, where they receive much of their health care.
With limited primary services available on Montana’s eight reservations, there is often a need for specialized services. But transportation to those services creates a huge barrier to health care for Native Americans, said Darren Crowe, chief executive of Crow/Northern Cheyenne Hospital.
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Crowe reported a 15-20% no-show rate on a daily basis for patients receiving care in Indian health services or from referral providers. And often this is due to unreliable transportation.
Luckily, Bets His Medicine mom Patricia Philbrick is a full-time mom and was able to stay with her son when he was airlifted to Aurora, Colorado for treatment.
At first, Bets His Medicine’s symptoms resembled common allergies and asthma, Philbrick said. And when she took him to their doctor in Poplar, Bets His Medicine was prescribed an albuterol inhaler, a drug commonly used to treat asthma.
But the medicine wasn’t working well, and when a new doctor saw Bets His Medicine, it was clear he needed more specialist care.
Philbrick prepared for the 640-mile round trip to Billings to see a specialist, but when they arrived at Billings Clinic, Bets His Medicine’s oxygen levels were low and his breathing labored. .
Within minutes, Lysinger was prepping Bets His Medicine and Philbrick for an emergency flight to Colorado Children’s Hospital.
“Everything happened very quickly with us,” Philbrick said, adding that by then she was starting to worry.
Philbrick stayed with Bets His Medicine during the week her son was hospitalized in Colorado. Back home, her husband took care of their two other children.
About 63% of Montana’s population, or 695,000 people, live in rural areas, and 45 of the state’s 56 counties are considered frontier communities. And Native Americans tend to live in rural areas. Only 18% live in cities of 20,000 or more people, according to the Department of Health and Human Services’ 2021 rural health plan.
Geographic isolation contributes to health disparities as continuity of care is regularly interrupted due to distances between services.
As Bets His Medicine is the youngest to be diagnosed with an autoimmune disease, he is also the youngest to receive the drug. Once a month, Bets His Medicine must visit Lysinger’s examination room where he is injected with monoclonal antibodies. Together they wait about an hour to watch for allergic reactions.
It is because of the risk of an allergic reaction that Philbrick makes the trip and stays overnight in Billings each month for the injection.
There is no financial reimbursement through insurance for transportation needs, which makes such trips a financial challenge for many.
Median household income among Native Americans in Montana is significantly lower than the state average, according to the 2017 DPHHS Health Assessment. Not surprisingly, median household income is a key social determinant of health.
“If people don’t have the ability to travel for specialist care, they can’t get needed services/treatments and may have to choose whether or not they can do so based on their own situation. If multiple visits are required, it can be difficult for families who have to travel long distances to get to appointments,” Stephanie Iron Shooter, director of American Indian health for the DPHHS.
The hope is to eventually land on a care plan that will allow Bets His Medicine to receive the injections closer to home on the Hi-Line, but for now his dosage is still being adjusted.
During the March 3 appointment, Lysinger discussed increasing the dosage with Philbrick in order to wean Bets His Medicine off steroids that help manage the blood vessel inflammation characteristic of the disorder.
Until the dosage is fixed and the risk of an allergic reaction from Best His Medicine is low, Philbrick will continue to carry an EpiPen for his son at all times and make the monthly trip to Billings indefinitely.