How Medicaid cuts could impact a family affected by SCID

When newborn screening results showed that Vittoria’s son, Anthony, may have severe combined immunodeficiency (SCID), the pediatrician recommended that they apply for Medicaid. SCID is a life-threatening primary immunodeficiency (PI) that is fatal unless treated, usually with bone marrow transplant (BMT) or clinical trial gene therapy.

Even though the family had private health insurance through Anthony’s father’s employer, Vittoria filled out the 27-page application. They applied for Medicaid under a state program for children with disabilities who would otherwise be ineligible due to their parent’s income.

The family submitted the application in the fall of 2022, two months after Anthony’s birth, and earned approval in the spring of 2023. Vittoria said she is thankful they had Medicaid in place by the time Anthony received a BMT because her husband’s health insurance didn’t cover all of the expenses. Their financial situation became even more difficult because Vittoria lost her job due to the time off required to care for her son.

“We don’t have a couple of million dollars to keep our son alive, so Medicaid allows us to live. It allows us to keep our son alive and get him the best care, and not go bankrupt,” said Vittoria.

Vittoria’s family and others living with PI who depend on Medicaid to survive are under threat. In May, U.S. House of Representatives Republicans passed a budget reconciliation bill that cuts federal spending for Medicaid and the Children’s Health Insurance Program (CHIP) by $863.4 billion over the next 10 years, according to estimates by the Congressional Budget Office (CBO), a non-partisan federal agency. The CBO also estimates that the cuts will increase the number of uninsured people in the U.S. by 7.8 million over the next eight years. The U.S. Senate is now considering the bill.

Medicaid and CHIP are federal and state-funded programs that provide free or low-cost healthcare to children and adults. According to the American Hospital Association, Medicaid is the “largest single source of health care coverage in the United States.” Children comprise nearly half of the 78.4 million people enrolled in the Medicaid/CHIP programs. Other enrollees include 15 million people with disabilities, and more than 17 million seniors age 50 and older.

An IDF 2016 survey showed that 26% of people with PI had health coverage under public insurance, with 6% enrolled in Medicaid or CHIP. Almost half of all families, whether covered by private or public health insurance, used more than 10% of their income to cover health costs.

“In light of healthcare reform in the U.S., policymakers must consider the health and economic cost burdens placed on this vulnerable chronic disease population,” said the survey summary.

Health policy and journalism research organization KFF reports, “The Medicaid reconciliation provisions are numerous and complicated, but the majority of federal savings stem from work requirements[…], increasing barriers to enrolling in and renewing Medicaid coverage, and limiting states’ ability to raise the state share of Medicaid revenues through provider taxes.”

The bill provisions require that enrollees renew eligibility at least two times per year and share the cost of some services through co-pays. The first-time enrollment process is also stricter.

Requiring proof of eligibility bi-annually would add to the time and effort it takes to show that Anthony still needs Medicaid coverage—and increase room for error. In the short time that Anthony has had Medicaid, Vittoria has already dealt with one paperwork error that caused his coverage to be dropped. She had to contact her state representative to get the coverage reinstated.

“Asking for additional proof of eligibility would require another round of follow ups—to make certain we actually get the paperwork, to make certain the TEFRA office receives it, and to make certain that it is processed and Anthony's coverage can continue,” said Vittoria.

The bill also limits how states can raise money to fund their portion of Medicaid. This part of the bill is a double hit because the federal government matches state funds—fewer state funds means less matching federal funds. Unlike the federal government, states cannot run budget deficits. They have to find another way to cover Medicaid costs or make cuts to benefits.

Any reduction to Medicaid would result in medical debt for Vittoria and her family. Even though Anthony’s BMT was successful thus far, follow-up is ongoing. Vittoria relies on Medicaid to cover all the expenses that their private insurance doesn’t cover, like portions of costs associated with surgeries, procedures, therapies, medications, and specialists.

“We would incur some medical debt, although hopefully not as much going forward since Anthony's BMT and surgeries are behind us. However, nothing is promised, so complications could arise at a later date. This is why his immunologist and BMT team including hematologists and oncologists team and associated specialists such as his ophthalmologist, cardiologist, and dermatologist are so careful with monitoring his progress,” said Vittoria.

“At the very least, we would be responsible for all the co-pays, which add up quickly with as many appointments and specialists as Anthony has.”

Anthony also gets genetic testing and bone marrow biopsies done periodically. Although the biopsies are outpatient procedures, they still require an anesthesiologist, whose services and medications are expensive, said Vittoria.

“I saw an article that said Medicaid is a middle-class benefit, and I thought that was very well said. It was talking about folks in our situation, where you get blindsided by something like this, and we’re just working people. We don’t have generational wealth or a couple of million dollars lying around. Most Americans don’t,” said Vittoria, who spoke to lawmakers on IDF’s Advocacy Day 2025.

“Anthony is our only child. And that was my point on Advocacy Day. I told the staffers, we never planned to be Medicaid users, but any one of us is one catastrophe away or one devastating diagnosis away from needing it.”