One of the first things that happens when you find out your child has a life-limiting illness, before the exhausting hours of treatments and the Make-a-Wish vacation, is that you learn you need to enroll in Medicaid.

Hours after being told that my daughter, Calliope, had metachromatic leukodystrophy (MLD), a disease that destroys nerves throughout the body, a social worker at the Children’s Hospital of Philadelphia kindly told my husband and me, “You can’t leave this hospital until we start this paperwork.” As a sociologist who has written books about poverty in America, that surprised me. I assumed that Medicaid is for low-income families.

“Oh, you are going to need this, honey,” she said with a smile.

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The costs of caring for a medically complex child can quickly overwhelm even households in the top of the income distribution. So for many people, having a sick or dying child in America means you need Medicaid. Even for people with decent private insurance, Medicaid provides supplementary health coverage to ensure that families don’t have to pay out of pocket for things like physical therapy, customized medical equipment, and skilled nursing.

I knew that getting my daughter on Medicaid would be a challenge. In our case, it meant submitting the application in person and making sure that the county welfare officials understood that Cal had a terminal illness.

After some wheedling and mild emotional blackmail on my part, our welfare office worker — who subsequently promised to pray for a miracle for Cal — gave me her supervisor’s direct phone number. For a month, I called the supervisor each day at 11:30 a.m. and I left the same message each time: “My daughter Calliope has a terminal illness called metachromatic leukodystrophy. The doctors say she has three years to live and we need her Medicaid approval to get her the care she needs.”

To say these words every day in the weeks after Cal’s diagnosis cut my heart open. But having studied the welfare system, I understood that being polite and persistent was important. But it often isn’t enough.

I never received a phone call back or spoke to the supervisor.

We did eventually receive the approval and were able to get Cal her stroller, physical therapy, skilled nursing at home, and enroll her in hospice care. Our home was transformed into a hospital so my husband and I could return to work and know Cal had the best care possible.

Half of all children with my daughter’s disease die by the age of 5. Cal will turn 10 years old next month. We are grateful for the fact that she laughs and smiles with us each day. When people ask me how she has beaten the odds, I tell them it is because of the care she receives in our home state of Pennsylvania, and because of the state’s Medicaid program.

Pennsylvania is one of the few states in the U.S. where someone diagnosed with metachromatic leukodystrophy gets fast-tracked for Medicaid. According to Cal’s records, she has had 1,712 documented encounters with providers; 194 blood tests; 42 X-rays; 22 emergency department visits; 16 admissions to the hospital — one lasting a month — that included two stays in intensive care units; 11 ultrasounds; and two MRIs.

Her care at the Children’s Hospital of Philadelphia has cost $1.1 million, which doesn’t include the 96 hours of skilled nursing she receives a week or the 12 medications she takes or the special formula that costs $200 per case, the diapers and medical equipment that get shipped to our home through hospice, and the home-based care provided through Medicaid. A more accurate estimate is probably around $2 million.

These days, I’ve been sharing the social worker’s advice about Medicaid — “you are going to need this” — with families whose children have been newly diagnosed with metachromatic leukodystrophy. As I try to comfort heartbroken parents whose children have just been diagnosed with this disease, I also advise them how to go to battle with Medicaid so they can avoid financial disaster and ensure their child gets the best care.

“Going to battle” is an apt way to describe this effort. Under the Trump administration, the silent war against Medicaid has intensified. A social worker at the Children’s Hospital of Philadelphia told me she sees Medicaid offices around the country routinely stall the application process so families must cover the expenses on their own for months, if not years. In many states, Medicaid only kicks in at the last moment, when children require acute end-of-life care.

At a conference for policymakers and scholars hosted by the University of Pennsylvania, I had the chance to speak to Medicaid officials about how they make their decisions. They told me they are given a pot of money to distribute to Medicaid recipients and, given the ongoing problems with state budgets, acknowledge they must ration care.

“Look, I have to choose between a kid with cancer who needs CAR-T cell therapy and the one who needs a heart transplant,” one North Carolina official told me. “There are limited funds. We must make impossible choices.”

A senior official at Medicaid put it even more bluntly: “The system is broken.”

The decision process is not fair or even particularly scientific. Families who fight by lobbying elected officials or by getting their stories in the newspaper have more luck than the ones who walk away and accept officials’ decisions.

The most important factor may be geography.

Doctors regularly encourage families with medically complex kids to move to a state with better Medicaid coverage. It’s good advice for the families, but it means that these states attract high-need families, penalizing their Medicaid programs for the care they provide children in need.

That highlights a central but often-unrecognized facet of Medicaid: It is not one insurance program but 51 programs run by the 50 states and the District of Columbia. Depending on the state’s political leanings and budget priorities, enrolling for Medicaid ranges from challenging to Sisyphean.

A family in Indiana was told it would need to wait a year before Medicaid kicked in, even though the family’s private insurance had maxed out and the family was paying out of pocket for their son’s care just a month or two after his diagnosis with metachromatic leukodystrophy. A family in Georgia had to hire a consultant to apply for their Katie Beckett waiver to access Medicaid for their child who could die in the next three years.

What is telling about both of these cases is that they occurred in families in which the parents were physicians — even medical professionals can find themselves helpless against the Medicaid behemoth.

One of the most horrifying cases involved a young mother in Illinois who received five rejections from her state’s Medicaid officials. They would not let her son be treated by an out-of-state specialist — a clinician who was part of one of the three teams in the U.S. who could treat her son. Illinois Medicaid tried to force the child to go to a local hospital, even though the doctors at the hospital acknowledged they had no experience treating her son’s condition and agreed that the out-of-state provider would give the child the best chance. It was as if Medicaid was running out the clock out on a 4-year-old boy so they would not have to cover his treatment.

At the Children’s Hospital of Pittsburgh, Dr. Maria Escolar — one of the handful specialists in the country who treat children with my daughter’s disease — told me that she devotes 10% of her time to seeking permission from Medicaid for patients’ families to cross state lines to be treated at her hospital.

While most Americans see Medicare as a rite of passage as people age, just as many resent Medicaid because they see it as a program for low-income families who have children “they can’t afford.” Such resentments are infused with racial antipathies since poor, black, and brown are synonymous to many Americans.

The Trump administration has weaponized these assumptions with work requirements or mandatory drug testing for Medicaid families. But the reality is that nearly half the 13 million children with disabilities in the U.S. receive coverage from Medicaid or the Children’s Health Insurance Program.

Medicaid can be a matter of life or death for children with cancer or muscular dystrophy or one of the “rare diseases” that affect as many as 30 million Americans, yet the mythology of the welfare queen keeps the public and politicians from acknowledging how Medicaid matters to the sickest and most vulnerable children in our society. It is shocking that families caring for sick and terminally ill children see their own government as an adversary in helping save a child’s life or making them more comfortable.

If more Americans knew the truth about Medicaid and understood how crucial it is to families caring for sick and dying children, maybe this program would finally be granted the same protection and respect our society holds for Medicare and Social Security.

But I fear that won’t happen unless tragedy strikes people in power and they must battle the Medicaid bureaucracy to save a cherished child.

Maria Kefalas is a professor of sociology at Saint Joseph’s University in Philadelphia and co-founder of the Calliope Joy Foundation and Cure MLD. She is working on a memoir about her life as a patient advocate, to be published by Beacon Press in 2021. She reports that Orchard Therapeutics, Takeda, Spark Therapeutics, and Thermo Fisher Scientific provide major funding to the Calliope Joy Foundation.

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  • Maria
    If folks have commercial insurance, wont families get the services and treatments covered once they hit OOP limits (~$15K)?
    Thanks
    Brad

    • No, they cover a fraction of what Medicaid covers. Medicaid covers therapies well beyond what private insurance will, they cover private duty nursing which most private insurance won’t, they cover long term care if a child needs it again private insurance won’t, in some states Medicaid covers PPEC which is a medical daycare staffed by nurses again not covered by private insurance, they cover diapers (after the age of 3 or 4 depending upon the state) which most private insurances don’t, Medicaid covers formulas which some private insurances won’t cover (specialized Rx formulas can run as high as $2,000 plus a month), some of the adapted equipment Medicaid covers private insurance won’t like bath seats and car seats (please remember we are discussing severely disabled children so supportive equipment like this is in thousands this isn’t a $100 Amazon purchase), Medicaid also is a funding source for IDEA and 504 students and schools use Medicaid funds to provide services during the school day private insurance doesn’t do this. Medicaid covers respite care, home health aides, funds group homes, adult day cares and other long term services the disabled need to stay in community, private insurance doesn’t. Medicaid covers non-emergency transportation to appointments which is important if you are disabled and can’t drive or are poor and can’t financially afford transportation to a hospital or doctor. Literally Medicaid for a vast majority of the disabled needing institutional level of care is a lifeline. Severely disabled people are able to live in their homes, work and go to school because of Medicaid. Children like in the article above may never be able to leave their hospital rooms if it wasn’t for Medicaid. Now, thanks to Ronald Regan (who created the Katie Beckett waiver) and HCBS waivers these children and adults are in the community. Not only is funding these programs adequately the right thing to do it is legally necessary due to Olmstead Supreme Court case.

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