Parents are struggling to get the new RSV drug for their babies. Here's what it's like.

The 2023-2024 virus season marks the first since the Food and Drug Administration (FDA) approval of a new preventative drug to protect infants and toddlers against respiratory syncytial virus (RSV), a common childhood illness that affects most kids by the time they turn 2. While the breakthrough has meant relief for parents of young children, high demand, supply issues and confusion over insurance has meant that actually getting the drug has proved difficult for many.

Here's what's happening and what two moms have experienced.

What to know about the new RSV drug

Nirsevimab, also referred to by brand name Beyfortus, received FDA approval in July and is recommended by the Centers for Disease Control and Prevention (CDC) for babies born during or entering the first RSV season (so, under 8 months of age) as well as for children between the ages of 8 months and 19 months, who are especially vulnerable to severe RSV disease.

Nirsevimab is not a vaccine, but rather it is a preventative drug — administered via shot — that produces passive immunity by delivering long-acting antibodies that help prevent the spread of RSV. That's particularly important among children, especially those under 6 months of age or who are immunocompromised. While the virus can cause mild symptoms, including coughing and a fever, in many children it can also cause the lung infection bronchiolitis and is the most common cause of hospitalization for infants, according to the CDC. RSV often resolves on its own within a week or two, but according to the American Academy of Pediatrics, approximately 1% to 3% of infants In the United States are hospitalized each year due to RSV.

Why parents are struggling to get it

In light of these RSV risks and concerns — not to mention an alarming surge in cases last year — countless parents are clamoring for the drug but are finding it to be in short supply or not yet in stock at their pediatrician's office. One of the drugmakers behind nirsevimab, Sanofi, has reported higher-than-anticipated demand for the monoclonal antibody shot, meaning that there are not enough doses to protect all eligible infants in the 2023-2024 RSV season.

In response to demand outpacing supply, late last month the CDC made a recommendation to prioritize the highest dose of nirsevimab (100mg) for the highest-risk babies: those under the age of 6 months and infants with underlying conditions that increase their risk of severe RSV. The CDC also advises that providers not give nirsevimab to children ages 8 months to 19 months old who are eligible to receive palivizumab, a shorter-acting alternative that requires monthly injections. To protect the nirsevimab supply, older infants and toddlers who are not high-risk should instead receive palivizumab.

But even parents of babies who are considered top priority have reported having trouble booking appointments or finding the shot available at their pediatrician's office. What's more, they've experienced considerable mixed messaging about insurance coverage and eligibility — with some parents of toddlers saying that their child's doctor has assured them that their child is eligible despite being older than the recommended age and not having underlying health conditions.

Two moms share what it's been like trying to get their babies the medication.

'We're taking tons of precautions until he can get the shot.'

Arlie has been eager to get the RSV drug for her 6-month-old baby, Everett, after being cautioned by her pediatrician about how dangerous the virus can be for infants. She is based in North Carolina, where RSV cases are rising. But the path forward seems unclear since Everett is near the age cutoff of the CDC recommendation.

“We asked the pediatrician about it at our 6-month appointment and she indicated that insurance issues might hold up the practice in getting their first shipments," Arlie says. "We're really hopeful that they'll resolve these problems prior to our next visit in early November, where he'll finally get his first COVID shot too. If they don't have it, we're planning to look for alternate offices where he might be able to get the shot before he misses his window of eligibility.”

Until then, her family is playing it safe.

"We're taking tons of precautions until he can get the shot, including masking indoors everywhere we go, only dining outdoors as a family and screening extended family members for illness before they visit," she tells Yahoo Life. "Our parents also got the senior version of the RSV shot to provide another layer of protection, and we're really grateful for that.”

Adds Arlie,"It can be mildly inconvenient to be so careful, but if we can keep our little guy out of the hospital and save a bed for a baby that is more high risk, it's totally worth it to us.”

'We were charged $520. It is unclear if that will eventually be reimbursed by insurance.'

Leslie, a mom of three boys ranging from 5 months to 5 years old, knew that with the two older brothers in school in Austin, Texas, it would be hard to prevent her youngest son from getting sick. She proactively asked her pediatrician about the RSV drug in early September, got on a waitlist and then continued to check with the doctor's office as the season progressed. She explains, “Our oldest son had RSV in 2018 and we really want to avoid the risk for the baby. At the time, several of his peers ended up being hospitalized.”

The doctor's office cautioned that insurance might be an issue. "[They] made the caveat that because the vaccine was new to market, it was unclear how insurance would cover," she says. "As a result, they would charge the full rate out of pocket, and eventually, that may be reimbursed. I called back at the end of October to inquire after I hadn't heard updates and was booked with a same-day appointment. We were charged $520. It is unclear if that will eventually be reimbursed by insurance.”

While paying the full cost out of pocket was the right decision for Leslie and her family, she is disappointed that the logistical challenges and up-front cost might prevent other families from getting the drug. “RSV was the hardest virus we have experienced with our kids, and it is a shame that costs and shortages will impact how widely the vaccine is distributed," she says.