Families with medically vulnerable children were caught in the middle of the CHOP-Keystone Health insurance standoff

Editor’s note: Late Tuesday night, after publication deadline, CHOP and Keystone First issued a joint statement that they had reached a new, multi-year contract, and said they planned to notify families this week. “Providing patient, members, and families with access to high quality care is a shared priority, and we are proud to continue our efforts to serve our region’s most vulnerable children,” the organizations said in a joint statement.

By the time baby Apollo was a year old, Sana and Zach Garner knew their son with cerebral palsy would need support from a highly specialized medical team to reach developmental milestones like holding a toy or bringing a sippy cup to his lips.

So they moved their family of three from New York City to Philadelphia to seek care at the Children’s Hospital of Philadelphia.

Apollo, now 4, has a form of cerebral palsy that affects his arm and leg movement, making it hard for him to feed himself or walk independently. At CHOP, his 15 doctors share notes and ideas to figure out how to help Apollo live his best life.

Now, a big money standoff has the Garners worried about losing vital resources that have enabled their family to thrive — most recently in Apollo’s world of alien make-believe.

The region’s leading pediatric health-care system is locked in a contract dispute with Keystone First, the largest Medicaid provider in Southeastern Pennsylvania. Families qualify for coverage based on their income or if they have a child with a disability.

If the two health-care giants cannot agree to a new contract by June 30, the Garners will be among thousands of families who will have to make a wrenching choice between losing access to CHOP doctors they trust with their children’s lives, or risking hard-won insurance coverage for nursing and medical devices.

It’s common for large insurers and health systems to cry foul as they haggle over contract terms. Such negotiations typically center around the rates paid for health-care services. Health systems say they need more money to provide highly specialized care, while insurers argue for tighter budgets to be good stewards of public money.

» READ MORE: Philadelphia Medicaid assessment program could expand to children’s and cancer hospitals

CHOP and Keystone declined to discuss their negotiations, but the battle has nonetheless become public. In March, CHOP sent text messages and launched a webpage dedicated to making sure families were aware of the stakes: Families with Keystone First insurance will no longer have in-network access to some of the country’s leading pediatric health experts.

Publicly airing such a dispute “usually means that things are not going well, and one or both parties think that public attention will give them additional leverage,” said Katherine Hempstead, a senior policy adviser at the Robert Wood Johnson Foundation.

CHOP and Keystone First both say they are fighting for families and hope to reach a deal before the current contract expires at the end of June.

This leaves Apollo’s parents and many others waiting out the stressful uncertainty. If negotiations fail and they need to make significant changes, either choice — finding new doctors or switching insurance — will have negative consequences.

“This isn’t just zeros at the end of a contract,” Sana Garner said. “These are real lives, real families affected.”

CHOP and Keystone say their talks are ongoing, as their June 30 deadline approaches.

“We are having productive conversations with Keystone First and hope to reach an agreement soon,” said Lindsay Torriero, senior director of brand communications at CHOP.

“We are committed to continuing our partnership and hope that CHOP chooses to remain in-network with Keystone First,” said Michael Chesney, a spokesperson for the insurer.

Both health operations are big businesses with national profiles.

Keystone First is run by AmeriHealth Caritas, a Delaware County-based subsidiary of Independence Health Group and one of the largest Medicaid insurers in the country. AmeriHealth Caritas posted a profit of $368 million in 2023, up 31% from the year before.

But its earnings could suffer this year from an ongoing decline in the number of patients on its plans, as states resume checking whether families still qualify for Medicaid post-pandemic. AmeriHealth Caritas had 887,715 Medicaid plan members in Pennsylvania in March, down from over a million a year before.

» READ MORE: Thousands have lost Medicaid as post-pandemic renewals begin in Pa., N.J.

CHOP reported a profit of $23 million in its most recent fiscal year, which ended June 30 — well below its typical earnings and an 85% drop from its $154 million profit the previous year.

CHOP is seeing fewer patients with private insurance. Medicaid now accounts for half of its patients, a shift in payer mix that has put significant financial pressure on the nonprofit health system. Medicaid, which is funded by state and federal governments, pays less than private insurance.

The business dispute is personal to families.

“I literally have nightmares that we have moved to another state, away from CHOP — that’s how important CHOP is,” said Karen Yosmanovich, of Feasterville.

Yosmanovich’s 4-year-old son, Alex, has a genetic syndrome so rare it has been studied in just 40 people. The condition affects his vision, hearing, ability to walk, and gross motor development.

He has a team of 22 CHOP doctors, including an audiologist, ophthalmologist, orthodontist, pulmonary sleep specialist, and developmental pediatrician.

Yosmanovich can’t imagine starting over, assembling a care team at a different health system — it took over a year to get an appointment with some of Alex’s more niche specialists.

“This is hurting families that are already hurting,” she said.

Families could switch insurance; CHOP is in network with five other Medicaid plans available in the area. But for some, switching insurance to keep CHOP doctors could risk losing other essential medical services.

Lauren and Adam Rizzo feel committed to doctors at CHOP who specialize in their 5-year-old daughter’s rare genetic neurological disorder, Rett syndrome. But they count on their coverage from Keystone First to provide the stair lift, power wheelchair, communication aides, and other medical devices Eva needs.

The insurer recently agreed to pay for 24-hour nursing for Eva, which doctors say is critical for her safety. Children with Rett syndrome often experience breathing irregularities, which can cause their oxygen levels to drop dangerously low while they sleep. Eva uses special devices to make sure she gets enough oxygen at night, but is still at risk of an episode that could be deadly, if medical help isn’t readily available.

“Every time she falls asleep I risk her dying,” Lauren Rizzo said.

Eva started having seizures earlier this year, and has been admitted to the pediatric intensive care unit at CHOP’s King of Prussia hospital five times in the past five months, as her team of specialists continue to troubleshoot a medication regimen that should keep her more stable.

The experience has proven to the Rizzos the importance of their proximity to some of the preeminent Rett syndrome specialists in the world. The King of Prussia hospital is 15 minutes from their house — less by ambulance — and Eva has spent so much time there that they know her by name, and know exactly what to do when she arrives.

The prospect of losing either their insurance or their doctors is terrifying, so they are trying to stay focused on Eva and not dwell on negotiations they have no control over.

“It’s exhausting. It’s maddening,” Rizzo said. “As a medical family, all we do is plan. But when everything is out of our hands, it’s very hard to develop any sort of plan.”

The ordeal has left the Garners, who relocated to call themselves a CHOP family, frustrated and stressed.

Keystone approved a home health aide for Apollo, but the family struggled to find someone for the role. Instead, Sana got certified as a home health aide and is paid as Apollo’s caretaker through insurance, a valuable source of income because she’s unable to work due to his demanding schedule. Applying for a home health aide through a new insurer would take months, if approved at all.

Still, they are reluctant to walk away from doctors who have helped Apollo grow into the cheery, imaginative boy he is.

“It’s such a game of chess and waiting,” Garner said.

Garner’s face relaxes when she walks in the front door of her Ardmore home and sees Apollo perched on her husband’s lap, his arm in the air to greet her.

Apollo’s mind knows what he wants, but can’t send the right messages to make his limbs move. He needs help holding utensils, sitting down, and moving around. At 32 pounds, he can still be lifted by his parents into a chair or up the stairs. Zach and Sana are not sure what happens when he gets too big to carry.

“Arm down,” Apollo instructs Zach, who lowers Apollo’s arm to his lap. He’s eager for his parents to play along with his alien imagination game.

“Welcome to my spaceship,” Apollo says. “Do you want to see my toys?”