Most CNY babies go without ‘miracle’ RSV drug; Schumer vows federal action

Syracuse, NY — Upstate Golisano Children’s Hospital has only one box left of the potentially life-saving RSV drug that protects most babies against complications from the common respiratory disease.

Pediatrician Dr. Jana Shaw displayed the only box Monday as local leaders joined U.S. Sen. Charles Schumer, D-NY, in calling on federal action to bring more of the drug to Central New York hospitals and doctor’s offices.

RELATED: Slow rollout of RSV drug leaves Upstate Golisano coping with surge of sick babies

The drug, Beyfortus, is recommended for all babies born during cold weather, and promises to reduce the chance of a baby being hospitalized for RSV by 80%. Respiratory Syncytial Virus kills at least one baby each year in Central New York and more than 250,000 worldwide.

But the drug manufacturers have only promised roughly 300,000 doses for the entire country this winter, or enough to cover less than 40% of the nation’s babies. That has led to widespread shortages in places that can least afford to go without.

Crouse Hospital, which runs the region’s largest neonatal intensive care unit, doesn’t have any doses of the drug right now, CEO Dr. Seth Kronenberg said. Every baby in the NICU is at high-risk of complications from RSV.

And Syracuse Community Health, which sees about 20 to 30 babies a day, has gotten only 20 doses all winter, Interim President and CEO Dr. Ofrona Reid said. That’s despite placing repeated orders for hundreds of doses since October.

“We struggle and struggle to get just a few doses,” Reid said, adding that SCH has rationed the doses to only the babies most at-risk for complications.

It’s anticipated that the U.S. will need more than one million doses of the drug each year to immunize all babies against RSV. The drug, aimed at babies 0 through 8 months old, provides up to five months of protection, enough to get through one RSV season.

Schumer called it a “miracle” drug, noting its high level of protection and its absence of serious side effects for most babies.

The drug is covered by private health insurance and by both Medicare and Medicaid, Schumer said.

The problem is how the private drug manufacturers, Sanofi and AstraZeneca, have distributed their limited supply of doses, Schumer said. It’s similar to the uneven distribution that plagued the early Covid vaccines.

The senator is calling on the Federal Drug Administration and the Centers for Disease Control and Prevention to force the drug manufacturers to distribute the drug more equitably, focusing their efforts on regions with shortages.

Typically, drug companies work directly with private distributors, which then decide where the doses are sent. Syracuse Community Health’s repeated orders with distributors have been met with an often-repeated response: it’s unavailable, Reid said.

Executives from Upstate and Crouse shared similar frustrations in getting their hands on the drug.

Shaw, the pediatrician, stopped by Upstate’s central pharmacy Monday morning in preparation for the noon news conference. That’s when she found out there was only one box left, containing five doses.

That’s not nearly enough considering the hundreds of babies that have been admitted to Golisano for RSV since September, she said. At least one baby dies each year at Upstate from the disease.

The distribution is so unequal that Schumer reported shortages at hospitals in Syracuse and Buffalo, but not Albany and Rochester. And one pediatrician’s office might have the drug, while another in the same community might not, Shaw said.

Fortunately, Syracuse’s RSV cases have been going down since spiking around Thanksgiving. In late November, Golisano had 77 children hospitalized with RSV, including 11 new admissions in a two-day span.

As of Monday, there were only six children at Golisano receiving treatment for RSV, Shaw said.

That doesn’t mean that there won’t be another outbreak, Shaw warned. The RSV season typically runs through April, before taking a break over the warmer months.

Schumer said he hoped his influence could bring more RSV doses to Central New York as soon as possible. But he also called upon federal regulators to provide any regulatory or supply-chain help necessary to the drug manufacturers to ensure there aren’t shortages of the drug next season.

Upstate, which hosted Schumer’s visit Monday, has a special connection to the RSV immunization, which was approved by federal regulators last year. Three Upstate babies were the first ones in the world to receive clinical trials of the new drug during its development a few years ago.

Onondaga County’s health commissioner, Dr. Kathryn Anderson, noted that RSV remains the number one cause of hospitalizations among infants. That’s why it’s problematic that shortages of the drug persist, despite federal guidelines that try to direct the limited number of doses to babies most in need.

“This is not a situation we should be in,” Anderson said.

Staff writer Douglass Dowty can be reached at [email protected] or (315) 470-6070.

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