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There’s Only 1 Drug for Postpartum Depression. Why Does Kaiser Permanente Make it So Hard to Get?

When Miriam McDonald decided she wanted to have another baby at age 44, her doctor told her she had a better chance of winning the lottery. So when she got pregnant, she and her husband were thrilled. But within three days of giving birth to their son, everything turned.

“I was thinking, ‘Oh my God, what did I do?’ I just brought this baby into this world and I can barely take care of myself right now,” she said. “I feel exhausted. I haven’t slept in three days. I haven’t really eaten in three days.”

As the weeks went by, her depression got worse. She felt sad, but also indifferent. She didn’t want to hold her baby, she didn’t want to change him. She said she felt no connection with him at all.

This confused her – she never felt anything like this after her first two kids – and she worried her mood might hurt her son. Untreated postpartum depression can affect babies’ cognitive and social development. For the mother, it can be life or death. Suicide accounts for 20% of maternal deaths.

“Every day, I was crying. Every day, I felt like I just wanted to die. Every day, I thought about ending my life,” said McDonald, who is Latina and works at UC Davis as an IT professional.

She went to Kaiser Permanente, her health care provider, for help. She said they put her on a merry-go-round of medication trial and error. The first drug her doctor prescribed made her anxious. The second drug gave her horrific nightmares. A third drug gave her auditory and visual hallucinations that took seven weeks to go away. 

Then, her doctor retired. And when McDonald complained to her new doctor that she was still depressed four months after giving birth, the physician suggested more medications.

“I was desperate,” McDonald said. “I was like, ‘I’m trying to help myself, but things are just getting worse.’ So what am I left with?”

She started doing her own research and learned about a new treatment, called brexanolone. It’s the first and only drug approved by the U.S. Food and Drug Administration to treat postpartum depression, which affects 1 out of 8 new mothers in California. Instead of targeting the serotonin system in the brain, like most antidepressants, brexanolone works by rebalancing the stress hormones that can get out of kilter after having a baby. It’s delivered through an IV infusion over 2.5 days in the hospital. 

In clinical trials, 75% of women who got brexanolone started to feel better immediately after the three-day treatment. Half the women went into complete remission.

McDonald wanted to try it. 

For the first year of her son’s life, Miriam McDonald says all her smiles were fake or strained. (Courtesy Miriam McDonald)

“People walk out of the hospital, wanting to be with their child, wanting to return home,” said Dr. Riah Patterson, who has been treating women with brexanolone at the University of North Carolina at Chapel Hill since it became available in summer 2019. “There is a hopefulness, a brightness. You can really see that transformation in the hospital room over those 60 hours. It’s pretty miraculous.”

When McDonald asked her doctor for brexanolone, she said no.

In an email, she said the existing studies were “not very impressive.” She told McDonald that she didn’t meet Kaiser’s criteria for the drug: she would have had to try and fail four medications and electroconvulsive therapy before she could try brexanolone. And all this had to happen within six months of having her baby, or she couldn’t try it at all.

How could anyone qualify, McDonald wondered?

“This is crazy. By the time you even try one drug, that’s like four weeks out,” she said.  “Another drug is four weeks out, another drug is four weeks out. There’s just no way.”

Kaiser’s guidance is an outlier. KQED analyzed guidelines from a dozen health plans operating in California. Three of them require women to fail one medication before trying brexanolone. One plan – the state’s Medi-Cal program for low-income women – requires two fails. But Kaiser is the only system KQED found that recommends women first fail four drugs.

“That’s absurd,” said UNC’s Patterson, one of several experts in postpartum depression who, in turn, called Kaiser’s guidance “ridiculous,” “harsh,” “abusive” and “insane.”

It may also be illegal.

Under a new state law that took effect this January, health plans must conform to “generally accepted standards of care,” including nonprofit guidelines, scientific literature and expert consensus, when making decisions about mental health treatment.

“If Kaiser is making it effectively impossible to get a particular, important mental health treatment, that could definitely be a violation of our parity law,” said State Sen. Scott Wiener, the bill’s author. 

Kaiser says it always follows the law. It says its integrated structure makes it different from traditional insurers. At Kaiser, a patient’s doctor determines whether a medication is necessary, not the health plan, and the criteria doctors use are recommendations, not requirements or pre-requisites that patients need to “exhaust,” said Dr. Maria Koshy, Kaiser’s chair of psychiatry for Northern California. 

“At the end of the day, this is an individual clinical decision by both the provider – the physician – and the patient,” she said.

But former Kaiser clinicians and legislative experts familiar with Kaiser’s model say the culture around these recommendations is to follow them. Doctors get questioned or can face consequences if they don’t, said Wiener.

‘It Saved My Life’

McDonald’s physician followed the criteria as if they were prerequisites when she declined to prescribe brexanolone. Kaiser’s grievance department sent a letter to another woman, Yesenia Munoz, denying brexanolone because she had not failed enough medications.

“When I talked to the caseworker at Kaiser that had denied the medication, he said that Zulresso was very expensive,” said Munoz, referring to brexanolone’s brand name.

Brexanolone treatment costs $34,000 for the medication, plus the cost of the three-day hospital stay, which can tack on another $30,000, at least. Kaiser is not yet certified to administer the treatment in-house, so it must pay outside hospitals to provide it. It says it has plans to eventually open three of its own certified centers.

Munoz was devastated by the denial. She was overwhelmed by postpartum depression and anxiety shortly after her daughter was born and, as a Latina, she said she was hesitant to seek help at first. When she did, none of the medications or therapies Kaiser offered her worked. She still felt suicidal.

“I could get out the door sometimes and take the stroller and go walk, and my mind kept on saying, ‘If you just step in front of the car, it’s all going to go away,’ ” she remembers.

Munoz got help from family and co-workers to appeal Kaiser’s decision to the state, and after reviewing her medical records, regulators ordered Kaiser to pay for the brexanolone treatment.

Munoz went to UC Davis Medical Center to get it, and she started feeling better within the first day.

After Yesenia Munoz received brexanolone to treat her postpartum depression, she felt blessed, connected with her daughter, and ‘happy enough to want to live.’ (Courtesy Yesenia Munoz)

“The nurse came in and she said something funny and I laughed,” Munoz said. “It was the first time I had laughed in so long.”

She started looking through photos and videos of her daughter on her phone and she says it was like she was experiencing those moments for the first time. She started making plans for the future. 

“It was like a switch flicked and it made me happy enough to want to live,” she said. “It saved my life.”

‘There Is No Place Where We Say Kaiser Is Exempt’

In 2008, Congress passed a landmark federal law aimed at correcting imbalances in how insurers covered mental health treatments compared to physical health, later reinforced by the Affordable Care Act in 2010. But insurers found loopholes, creating overly restrictive or self-serving criteria that made it easy to deny services, and as a result, save money.

California’s new law, SB 855, is aimed at tightening those loopholes, and has been hailed by advocates as a national model for mental health reform. It requires health plans to use clinically based, expert-recognized criteria and guidelines in making medical decisions, with the goal of limiting arbitrary or cost-driven denials. 

Kaiser raises questions about how precisely the new law applies to them, given its unique integrated structure, where doctors make determinations about what is medically necessary rather than the health plan side of the organization. Kaiser’s Dr. Koshy said SB 855’s requirement to comply with generally accepted standards of care “does not apply” to its brexanolone recommendations because they were developed and are used by doctors, not plan administrators. (When KQED asked Kaiser to provide the brexanolone policy its health plan uses, it said it didn’t have one.)

“We 100% intended this law to apply to the care people get at Kaiser,” said Julie Snyder, government affairs director at the Steinberg Institute, which co-sponsored the law. “There is no place where we say Kaiser is exempt.” 

Doctors at Kaiser have historically been “gatekeepers” for services in the system, said Meiram Bendat, an attorney and licensed psychotherapist who also advised on the law. It doesn’t matter if practice recommendations for brexanolone were written by doctors or administrators, or whether the recommendations are mandatory or optional – Bendat says they must be compliant with the law. 

“If it’s inconsistent with generally accepted standards of care, then it has no place in California,” he said.

Some of Kaiser’s recommended criteria for brexanolone are aligned with generally accepted standards of care; for example, reserving the drug for women who  are six months or less postpartum, which was a criterion used in the clinical trials the FDA relied on when it approved the drug. 

But the recommendation to try four or five alternative treatments before considering brexanolone conflicts with the judgment of half a dozen women’s health experts interviewed for this story. They say there just isn’t enough time in the postpartum period. And there’s too much at stake. 

Not only are babies at risk of developmental and emotional problems if their mother is depressed, husbands and partners are also at higher risk for depression and anxiety. And because new moms are learning to breastfeed, and figuring out what’s part of the new normal and what’s not, it can take months just to recognize there’s a problem, said UNC’s Riah Patterson.

“It takes so long for this illness to come to recognition and for someone to actually get into an appointment and actually be seen by a provider,” she said.

Dr. Riah Patterson discusses patients and treatment plans with her trainee, a third-year psychiatry resident at the Center for Women’s Mood Disorders at UNC-Chapel Hill. (Courtesy Riah Patterson)

Indeed, the FDA fast-tracked the approval of brexanolone in part because of how quickly it worked, allowing women to feel better and get back to their families in three days.

“It’s new, it’s promising,” said Kaiser’s Koshy, but, she added, “it’s not a benign medication.” Six women in the clinical trials experienced loss or near loss of consciousness, which is why the FDA requires women to be continuously monitored in certified health centers when getting the infusion. 

Also, the safety and efficacy data is limited, Koshy said. The clinical trials only compared brexanolone to placebo, not to alternative treatments. So while the data show brexanolone works better than nothing, there’s no data on whether it works better than Zoloft or electroconvulsive therapy.  

Koshy says Kaiser is always reviewing practice recommendations as new evidence becomes available, but also acknowledged that Kaiser’s recommendations for brexanolone have not been updated since they were first developed two years ago, in July 2019. 

It is unclear what role the Department of Managed Health Care, the state agency that regulates Kaiser, will play in resolving these questions. In a statement, the department said it will review any criteria or guidelines the Kaiser health plan uses for brexanolone, but said it does not have jurisdiction over physician decisions.

The DMHC also monitors patient complaints around new medications and treatments in order to identify problems with access to care. So far, the DMHC has published two complaints about brexanolone in its public database – both were filed by Kaiser patients.

Kaiser is the largest insurer in California. It holds a 40% share of the market, covering 6.1 million patients. But at UC Davis, where Kaiser says it sends all patients who need brexanolone in Northern California, Kaiser patients are only 15% of those who got the drug, according to Dr. Shannon Clark, a psychiatrist and OB/GYN overseeing the treatments. 

She says of the 13 women who’ve been treated at UC Davis in the last two years, only two were from Kaiser. One was Munoz, who was approved only after the state intervened. The other was Whitney Worthington. Both women canceled their coverage with Kaiser over the postpartum mental health care they received.

Worthington struggled with depression for most of her adult life, but when she decided to get pregnant, she weaned herself off her antidepressant. It was a grueling withdrawal process. 

“That was the worst two months of my life,” she said. “Feeling suicidal at times. It was just miserable.” 

She knew then that if she got depressed after her baby was born, she did not want to take medication because she wanted to have more children and didn’t want to go through withdrawal again. 

When she ended up in the Kaiser ER with suicidal thoughts a few weeks after giving birth, she had to repeatedly decline offers — even threats — of medication. She saw a series of providers at two Kaiser hospitals and several told her she needed brexanolone. One said “it was her only hope.” 

But Worthington was also told by other providers that it wasn’t medically necessary and that Kaiser didn’t offer it at all. The official denial that came from Kaiser’s billing department offered no reason, said Marcus Worthington, Whitney’s husband. 

He spent weeks on the phone with Kaiser representatives, fighting, negotiating and pleading, until a high-level administrator stepped in and personally approved it. 

“The only thing that changed was that we were able to stir up enough dirt and I was able to pitch a big enough fit,” said Marcus, who is Latino and Native American. “I have a relatively Anglo-Saxon name and Whitney is a young white woman. Frankly, I think it all plays in that it finally got on somebody’s radar who wasn’t going to ignore it.”

After getting the treatment at UC Davis, Whitney says she could think clearly again and truly enjoy the last two months of maternity leave she had with her daughter. She called brexanolone “a total miracle.”

‘This Is How You Treat Postpartum Mental Health?’

Kaiser said it cannot comment on any individual cases because of privacy laws, but said generally, “We feel deep compassion for any patient experiencing the difficult and serious effects of postpartum depression, and our goal is always to support every patient’s safe return to a healthy mental state.”

When Miriam McDonald called Kaiser’s grievance department to complain about her treatment, Kaiser sent the cops to her house for a welfare check.

The officers were calm and nice, McDonald said, but when she closed the door, she cried her eyes out.

 “It just brought me to a whole new low,” she said. “Why didn’t my doctor call me and talk to me first? I mean, this is how you treat postpartum mental health? How dare you.”

McDonald also appealed Kaiser’s denial of brexanolone to state regulators, with help from advocates at 2020 Mom, but by the time she got there, the clock had already run out. She was past the six-month postpartum cutoff. 

She never got brexanolone.

Still, she continued to fight for relief and eventually got Kaiser to cover a different treatment called transcranial magnetic stimulation, which uses an electromagnetic coil to stimulate nerve cells in the brain that control mood.

Miriam McDonald said she is finally feeling like herself again, a year and a half after her son’s birth. (Courtesy Miriam McDonald)

McDonald had to go five days a week for three months. Now, more than a year and a half after having her baby, she is finally feeling like herself again.

“I can remember I woke up one day and I was excited. I had actual joy,” she remembers. “I got up and I walked into his room and I was like, ‘Hey, Nico! Hi! Hey, baby!’ And he jumped up from his crib and giggled and put his arms out. And I just swooped him up in my arms and cried. Because I was like, ‘I am so proud to be your mom.’”

Now when her son smiles at her, she genuinely smiles back. But she can’t help but grieve all the smiles she didn’t return. How she felt like she was barely there when her son took his first steps.

“I felt like I’ve been robbed really of all those moments,” she said, “of those little milestones, that I’m never going to get back.”

Copyright 2021 KQED