Catholic mom: Children’s-Blue Cross contract dispute puts baby’s cancer treatment in limbo

| June 30, 2017 | 1 Comment

One-year-old Leo Jaeger is cancer free thanks to his care at Children’s Hospital in Minneapolis. A parishioner of St. Patrick in Oak Grove, he is among more than 66,000 patients whose care at Children’s may be compromised if Blue Cross Blue Shield and the hospital don’t settle contract terms by July 5. Courtesy Melissa Jaeger

Two weeks ago, Melissa and Tom Jaeger were given news they had for months been desperate to hear: Scans showed no signs of cancer in their 19-month-old son’s body.

Born in November 2015, the Jaegers’ son Leo was 6 months old when they discovered lumps on the back of his head, and 9 months old when he was diagnosed with Langerhans cell histiocytosis, a rare cancer. For the past 10 months, their lives have revolved around surgeries, chemotherapy treatments, cancer scans and a blood transfusion.

Melissa Jaeger praises Leo’s doctor and medical team at Children’s in Minneapolis with the quality of care he has received, as well as their advocacy for Leo’s access to a drug that likely has never before administered to a patient so young. It was that drug that finally seems to have killed the cancer.

That team is “literally God’s gift to us,” she said, but their relationship is at risk if contract negotiations between insurer Blue Cross Blue Shield of Minnesota and Children’s Hospitals and Clinics of Minnesota fall through. Leo is among more than 66,000 Children’s patients insured by Blue Cross who could be out of their insurance coverage network July 5.

“What is making me so angry is that I don’t have the capacity to worry about this right now, because I’m worried about saving my child’s life,” said Jaeger, a parishioner of St. Patrick in Oak Grove who works for Aerotek, an international staffing agency. Her employer offers insurance through Blue Cross Blue Shield of Maryland, but it abides by Blue Cross Blue Shield of Minnesota’s agreements.

Leo Jaeger during cancer treatment. Courtesy Melissa Jaeger

According to the website of Children’s campaign to stay in network, #StandTallForSmall, Blue Cross has made an “impossible demand” by asking the hospital to choose between a 31 percent cut to rates the hospital is paid to treat its Medicaid insured-patients, or forgo future inflationary adjustments to rates it is paid to treat patients who hold private insurance.

“Accepting Blue Cross’ demand would threaten the long-term viability of Children’s, and would eventually force us to eliminate services and programs that save kids’ lives,” it states.

In March, Children’s notified Blue Cross that it would terminate its contract with the insurer on July 5 unless it could reach a new agreement.

Blue Cross states that its aim is health care affordability, and accuses Children’s of having higher-than-average costs. On its website, Blue Cross said that “no matter what happens, every member will have access to the care they need” and that other in-network Twin Cities and Minnesota hospitals “stand ready” to take over Children’s patients’ care, if necessary. It disputes Children’s citing of a 31-percent cut to Medicaid rates, citing outdated proposed contract terms.

“The current number being offered is less than half of what they cite, so that Blue Cross would be paying Children’s the same rates for Medicaid services as the State of Minnesota,” Blue Cross states on its website.

Children’s alleges that while Blue Cross has said it will help patients transition to find care elsewhere, the change in coverage would require families to go out of state for specialty care.

Continuity of care at stake

Jaeger, 36, doesn’t take sides in the Children’s-Blue Cross battle, but she does think Blue Cross’ ultimatum as reported is unreasonable. When she received a letter earlier this year alerting her family to the contract negotiations, she assumed that the issue would be resolved. Now that the deadline is fast approaching, she’s using Facebook to alert others about the situation.

Jaeger said Blue Cross’ efforts to placate concerns with promises of continued care elsewhere are misleading. Not all children’s hospitals offer the same kind of care that Children’s does, and an influx of patients at other hospitals could diminish the quality of care they can offer, she said.

And, with specialty cases like Leo’s — and many of the other patients cared for by Children’s — continuity of care is essential, Jaeger said. Leo’s oncologist, Dr. Jawhar Rawwas, had seen Leo’s cancer before and is in touch with specialists from the two U.S. centers that research the disease. Meanwhile, Leo’s care team understands aspects of his care that medical records don’t communicate, such as how his facial expressions indicate his pain level.

“That’s what I’m so mad about,” Jaeger said, referring to the standoff between Blue Cross and Children’s. “Not only do I have to worry about my child in [his] medically complex case and making sure that we’re on the same page and we’re not missing anything, I have to worry about the fact that we won’t be able to see the same people [and] have the same level of care, and we have to start over with a whole new team … . It’s not about what you can read in a report. It’s the conversations that we’ve had along the way that aren’t always captured in notes.”

Starting care over with another team at another hospital could also put Leo’s medication at risk. The drug is expensive, but its maker, Novartis, gives it to the Jaegers at no cost through its compassionate care program. To make this happen, Novartis and Children’s entered into a legal agreement to develop protocols for the drug’s administration, and then the arrangement had to be approved by the U.S. Food and Drug Administration.

Leo Jaeger during cancer treatment. Courtesy Melissa Jaeger

The process took more than a month to complete, and it would have to be repeated if the Jaegers transfer Leo’s care to another hospital. The drug inhibits his cells from mutating into cancerous cells, and if Leo stops the drug, the cancer could return within days, Jaeger said.

The Jaegers administer Leo’s drug twice daily, donning gloves and masks to prepare a drug cocktail Leo takes orally by syringe.

“It’s like ‘Breaking Bad’ in our house,” Jaeger joked. The routine will be part of Leo’s daily life until medical research provides a new treatment, which Jaeger is optimistic it will. Even the past few years have yielded considerable research on Langerhans cell histiocytosis, which affects two in 1 million children, she said. Dr. Rawwas told her that just two years ago, Leo’s treatment wouldn’t have been possible.

With the drug, Leo went from experiencing regular, severe pain to acting like a typical toddler, playing with his 4-year-old brother, George, and quickly catching up to milestones he missed as his body fought the cancer and endured treatment.

Jaeger said her family hasn’t seriously considered the options if Blue Cross and Children’s don’t come to a resolution. They’ve applied to Blue Cross for an exception, but haven’t heard whether they’ll be approved.

Trust amidst suffering

As July 5 approaches, Jaeger trusts that God is using Leo’s cancer and her family’s suffering for a greater good. She said that Leo’s case may influence research and encourage doctors to test for genetic mutations sooner after diagnosis, since identifying Leo’s BRAF gene mutation pointed them in the direction of their miracle drug.

Leo’s diagnosis came following a series of other recent sufferings — Melissa’s mother’s house fire in 2013; two surgeries for George for a cranial abnormality; and the death of Tom’s parents in 2015 and 2016. But she doesn’t dwell on the challenges her family has faced.

“If I ask ‘why?’ too much, then you have to ask ‘why?’ for everyone else,” she said. “Why was Leo born in this day and age, because our doctor said two years ago this wouldn’t have been possible? Why was he born here? So I could ask why me or why now, but the Lord has a very special thing for him to accomplish in his life, and he’s part of his master plan, so why now?”

“I don’t know why we’re suffering,” she added, “but … God’s going to use this for his glory. And I trust in that. And that’s the only thing I have to cling to.”

Jaeger hopes that by spreading awareness of the Blue Cross-Children’s situation, she can advocate for people who don’t have private insurance, don’t speak English or aren’t well educated, or who aren’t naturally fighters.

She said she’s still “unpacking” how to understand this experience in light of her Catholic faith.

“It’s been fight or flight or flight the whole time,” she said. “It’s like I’m in a war, and you have to be on your ‘A’ game the whole time. So we’re in fight or flight mode, and we’re just getting by. Tom and I choose to fight.”

She knows some people don’t see the Blue Cross-Children’s negotiations as important, but she advises them to reconsider.

“This isn’t your issue right now, but it could be your issue, so it’s your fight to fight as well,” Jaeger said. “Just because you don’t have a medically compromised kid right now doesn’t mean that you might not in the future. We need Children’s Hospital to be thriving to help all of our children.”


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