Almost all new parents go through it: the distress of hearing their child scream at the doctor’s office. They endure the emotional torture of having to hold their child down as the clinician sticks them with one vaccine after another.

“The first shots he got, I probably cried more than he did,” said Remy Anthes, who was pushing her 6-month-old son, Dorian, back and forth in his stroller in Oakland, California.

“The look in her eyes, it’s hard to take,” said Jill Lovitt, recalling how her infant daughter Jenna reacted to some recent vaccines. “Like, ‘What are you letting them do to me? Why?’”

Some children remember the needle pain and quickly start to internalize the fear. That’s the fear Julia Cramer witnessed when her 3-year-old daughter, Maya, had to get blood drawn for an allergy test at age 2.

“After that, she had a fear of blue gloves,” Cramer said. “I went to the grocery store and she saw someone wearing blue gloves, stocking the vegetables, and she started freaking out and crying.”

Pain management research suggests that needle pokes may be children’s biggest source of pain in the health care system. The problem isn’t confined to childhood vaccinations either. Studies looking at sources of pediatric pain have included children who are being treated for serious illness, have undergone heart surgeries or bone marrow transplants, or have landed in the emergency room.

“This is so bad that many children and many parents decide not to continue the treatment,” said Stefan Friedrichsdorf, a specialist at the University of California-San Francisco’s Stad Center for Pediatric Pain, speaking at the End Well conference in Los Angeles in November.

The distress of needle pain can follow children as they grow and interfere with important preventive care. It is estimated that a quarter of all adults have a fear of needles that began in childhood. Sixteen percent of adults refuse flu vaccinations because of a fear of needles.

Friedrichsdorf said it doesn’t have to be this bad. “This is not rocket science,” he said.

He outlined simple steps that clinicians and parents can follow:

• Apply an over-the-counter lidocaine, which is a numbing cream, 30 minutes before a shot.
• Breastfeed babies, or give them a pacifier dipped in sugar water, to comfort them while they’re getting a shot.
• Use distractions like teddy bears, pinwheels, or bubbles to divert attention away from the needle.
• Don’t pin kids down on an exam table. Parents should hold children in their laps instead.

At Children’s Minnesota, Friedrichsdorf practiced the “Children’s Comfort Promise.” Now he and other health care providers are rolling out these new protocols for children at UCSF Benioff Children’s Hospitals in San Francisco and Oakland. He’s calling it the “Ouchless Jab Challenge.”

If a child at UCSF needs to get poked for a blood draw, a vaccine, or an IV treatment, Friedrichsdorf promises, the clinicians will do everything possible to follow these pain management steps.

“Every child, every time,” he said.

It seems unlikely that the ouchless effort will make a dent in vaccine hesitancy and refusal driven by the anti-vaccine movement, since the beliefs that drive it are often rooted in conspiracies and deeply held. But that isn’t necessarily Friedrichsdorf’s goal. He hopes that making routine health care less painful can help sway parents who may be hesitant to get their children vaccinated because of how hard it is to see them in pain. In turn, children who grow into adults without a fear of needles might be more likely to get preventive care, including their yearly flu shot.

In general, the onus will likely be on parents to take a leading role in demanding these measures at medical centers, Friedrichsdorf said, because the tolerance and acceptance of children’s pain is so entrenched among clinicians.

Diane Meier, a palliative care specialist at Mount Sinai, agrees. She said this tolerance is a major problem, stemming from how doctors are usually trained.

“We are taught to see pain as an unfortunate, but inevitable side effect of good treatment,” Meier said. “We learn to repress that feeling of distress at the pain we are causing because otherwise we can’t do our jobs.”

During her medical training, Meier had to hold children down for procedures, which she described as torture for them and for her. It drove her out of pediatrics. She went into geriatrics instead and later helped lead the modern movement to promote palliative care in medicine, which became an accredited specialty in the United States only in 2006.

Meier said she thinks the campaign to reduce needle pain and anxiety should be applied to everyone, not just to children.

“People with dementia have no idea why human beings are approaching them to stick needles in them,” she said. And the experience can be painful and distressing.

Friedrichsdorf’s techniques would likely work with dementia patients, too, she said. Numbing cream, distraction, something sweet in the mouth, and perhaps music from the patient’s youth that they remember and can sing along to.

“It’s worthy of study and it’s worthy of serious attention,” Meier said.

This article is from a partnership that includes KQED, NPR, and KFF Health News.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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A much-awaited treatment for postpartum depression, zuranolone, hit the market in December, promising an accessible and fast-acting medication for a debilitating illness. But most private health insurers have yet to publish criteria for when they will cover it, according to a new analysis of insurance policies.

The lack of guidance could limit use of the drug, which is both novel — it targets hormone function to relieve symptoms instead of the brain’s serotonin system, as typical antidepressants do — and expensive, at $15,900 for the 14-day pill regimen.

Lawyers, advocates, and regulators are watching closely to see how insurance companies will shape policies for zuranolone because of how some handled its predecessor, an intravenous form of the same drug called brexanolone, which came on the market in 2019. Many insurers required patients to try other, cheaper medications first — known as the fail-first approach — before they could be approved for brexanolone, which was shown in early trials reviewed by the FDA to provide relief within days. Typical antidepressants take four to six weeks to take effect.

“We’ll have to see if insurers cover this drug and what fail-first requirements they put in” for zuranolone, said Meiram Bendat, a licensed psychotherapist and an attorney who represents patients.

Most health plans have yet to issue any guidelines for zuranolone, and maternal health advocates worry that the few that have are taking a restrictive approach. Some policies require that patients first try and fail a standard antidepressant before the insurer will pay for zuranolone.

In other cases, guidelines require psychiatrists to prescribe it, rather than obstetricians, potentially delaying treatment since OB-GYN practitioners are usually the first medical providers to see signs of postpartum depression.

Advocates are most worried about the lack of coverage guidance.

“If you don’t have a published policy, there is going to be more variation in decision-making that isn’t fair and is less efficient. Transparency is really important,” said Joy Burkhard, executive director of the nonprofit Policy Center for Maternal Mental Health, which commissioned the study.

With brexanolone, which was priced at $34,000 for the three-day infusion, California’s largest insurer, Kaiser Permanente, had such rigorous criteria for prescribing it that experts said the policy amounted to a blanket denial for all patients, according to an NPR investigation in 2021.

KP’s written guidelines required patients to try and fail four medications and electroconvulsive therapy before they would be eligible for brexanolone. Because the drug was approved only for up to six months postpartum, and trials of typical antidepressants take four to six weeks each, the clock would run out before a patient had time to try brexanolone.

An analysis by NPR of a dozen other health plans at the time showed Kaiser Permanente’s policy on brexanolone to be an outlier. Some did require that patients fail one or two other drugs first, but KP was the only one that recommended four.

Miriam McDonald, who developed severe postpartum depression and suicidal ideation after giving birth in late 2019, battled Kaiser Permanente for more than a year to find effective treatment. Her doctors put her on a merry-go-round of medications that didn’t work and often carried unbearable side effects, she said. Her doctors refused to prescribe brexanolone, the only FDA-approved medication specifically for postpartum depression at the time.

“No woman should suffer like I did after having a child,” McDonald said. “The policy was completely unfair. I was in purgatory.”

One month after NPR published its investigation, KP overhauled its criteria to recommend that women try just one medication before becoming eligible for brexanolone.

Then, in March 2023, after the federal Department of Labor launched an investigation into the insurer — citing NPR’s reporting — the insurer revised its brexanolone guidelines again, removing all fail-first recommendations, according to internal documents recently obtained by NPR. Patients need only decline a trial of another medication.

“Since brexanolone was first approved for use, more experience and research have added to information about its efficacy and safety,” the insurer said in a statement. “Kaiser Permanente is committed to ensuring brexanolone is available when physicians and patients determine it is an appropriate treatment.”

“Kaiser basically went from having the most restrictive policy to the most robust,” said Burkhard of the Policy Center for Maternal Mental Health. “It’s now a gold standard for the rest of the industry.”

McDonald is hopeful that her willingness to speak out and the subsequent regulatory actions and policy changes for brexanolone will lead Kaiser Permanente and other health plans to set patient-friendly policies for zuranolone.

“This will prevent other women from having to go through a year of depression to find something that works,” she said.

Clinicians were excited when the FDA approved zuranolone last August, believing the pill form, taken once a day at home over two weeks, will be more accessible to women compared with the three-day hospital stay for the IV infusion. Many perinatal psychiatrists told NPR it is imperative to treat postpartum depression as quickly as possible to avoid negative effects, including cognitive and social problems in the baby, anxiety or depression in the father or partner, or the death of the mother to suicide, which accounts for up to 20% of maternal deaths.

So far, only one of the country’s six largest private insurers, Centene, has set a policy for zuranolone. It is unclear what criteria KP will set for the new pill. California’s Medicaid program, known as Medi-Cal, has not yet established coverage criteria.

Insurers’ policies for zuranolone will be written at a time when the regulatory environment around mental health treatment is shifting. The U.S. Department of Labor is cracking down on violations of the Mental Health Parity and Addiction Equity Act of 2008, which requires insurers to cover psychiatric treatments the same as physical treatments.

Insurers must now comply with stricter reporting and auditing requirements intended to increase patient access to mental health care, which advocates hope will compel health plans to be more careful about the policies they write in the first place.

In California, insurers must also comply with an even broader state mental health parity law from 2021, which requires them to use clinically based, expert-recognized criteria and guidelines in making medical decisions. The law was designed to limit arbitrary or cost-driven denials for mental health treatments and has been hailed as a model for the rest of the country. Much-anticipated regulations for the law are expected to be released this spring and could offer further guidance for insurers in California setting policies for zuranolone.

In the meantime, Burkhard said, patients suffering from postpartum depression should not hold back from asking their doctors about zuranolone. Insurers can still grant access to the drug on a case-by-case basis before they formalize their coverage criteria.

“Providers shouldn’t be deterred from prescribing zuranolone,” Burkhard said. 

This article is from a partnership that includes KQED, NPR and KFF Health News.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

Subscribe to KFF Health News’ free Morning Briefing.