After the U.S. House of Representatives narrowly passed the American Health Care Act (AHCA) bill on May 4, many in the country were surprised to learn what, exactly, insurance providers often consider a “pre-existing condition.” Due to the proposed shift in federal policy under the AHCA, the cost of insurance premiums could drastically rise for individuals with these conditions—including postpartum depression, one among several perinatal mood disorders.
The inclusion of perinatal mood disorders on the list is particularly striking because individual states have already been fighting to increase access to care. After years of struggling to drag perinatal mood disorders into the light, advocates are watching them disappear into the shadows again with the threat of a health policy bill that could discourage new parents from seeking treatment or punish those who did so in the past.
Perinatal mood disorders are extremely common and treatable, explained Dr. Juli Fraga, a licensed psychologist in San Francisco who treats them as part of her work. About one in seven pregnant people is at risk of mild, moderate, or severe perinatal mood disorders, which include depression and anxiety. Some patients develop obsessive-compulsive disorders, and in very rare cases, they can experience psychosis, a psychiatric emergency that can be extremely dangerous for parents and children.
Ann Smith, the president of Postpartum Support International (PSI), an awareness group that connects people in need with services, told Rewire that perinatal mood disorders can arrive shortly before delivery and up to a year after pregnancy. These mental health conditions can interfere with breastfeeding, bonding, and other aspects of child care, with studies showing that such disorders can contribute to developmental delays in offspring. Untreated illness can create a lifelong legacy for children, put stress on families, and cause preventable suffering. Overall, low-income patients, especially those of color, are less likely to be accurately diagnosed and treated.
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In recent years, a conversation about awareness and fighting stigma has contributed to the adoption of widespread screening in some areas of the country, with physicians encouraged to evaluate patients for signs of distress. That leads to referrals to qualified providers, support groups, and community resources. Next on the agenda is supporting truly universal screening, backed by access to care.
Paige Bellenbaum, program director at the Motherhood Center of New York, which works with new parents facing perinatal mood disorders, understands this issue intimately. When her 10-year-old son was born, she experienced postpartum depression and struggled to get treatment, an odyssey that ultimately set her on the path to pushing for universal screening in New York City. But she didn’t stop there, working with lawmakers to secure better access to both screening and treatment across the state.
“Awareness is great as a first step. Screening is wonderful as a second step. What needs to happen is funding attached to legislation that provides providers with funding to be able to train and hire staff in this particular area,” she told Rewire, introducing a note of caution to conversations about universal screening.
Sweeping bills and declarations suggesting that universal screening is the solution are only one part of the picture, because once a patient is diagnosed, treatment isn’t always readily available. This is a concern for advocates at PSI as well, who also coordinate to help people access care, finding that primary care providers don’t always know where, and how, to refer people once they show symptoms of a perinatal mood disorder or participate in voluntary screening and give answers that are cause for concern. Many providers aren’t qualified to provide treatment for this highly time-sensitive mental health condition, and may not be familiar with resources in their communities that could help struggling patients.
Maryanne Bombaugh, the Massachusetts section chair of the American College of Obstetricians and Gynecologists (ACOG), told Rewire that the organization was shocked to discover that suicide is one of the leading causes of maternal death. The United States has an extremely poor record on maternal and neonatal mortality, especially where women of color are concerned, so identifying solutions to this problem is essential—that’s certainly the case in Texas, where no fewer than three bills to address perinatal mood disorders have been introduced.
Massachusetts clinicians, meanwhile, have access to an innovative program, the Massachusetts Child Psychiatry Access for Moms, that’s working to address this problem. While providers are encouraged to screen, they’re also provided with tools that help them connect patients to treatment—if a patient screens positive, explains Bombaugh, providers can pick up a phone to talk with an expert, discussing referral options that are geographically accessible for the patient.
This system also opens up opportunities provided by telemedicine, which allows patients in rural areas to get high-quality care that might otherwise be hours away. Even in Massachusetts, there are remote communities that benefit from telemedicine, but in states with small populations spread across vast distances, like Montana and North Dakota, telemedicine is a vital service for expanding access to care. PSI’s Smith is optimistic that electronic therapy and telemedicine could be a valuable part of the treatment toolbox across the country, though the anti-choice war on telemedicine could create a stumbling block.
The program is so successful in Massachusetts that it’s also being used as an inspiration for other perinatal mood disorder interventions elsewhere, says Bombaugh, such as in states like Colorado, Ohio, and Maine.
On a national level, the American Congress of Obstetricians and Gynecologists supports legislation that increases access to care and works with lawmakers to advocate for patients who need obstetrics and gynecology services. For example, the 21st Century Cures Act sets aside funding for management of perinatal mood disorders—but only if Congress appropriates it. And even if Congress chooses to fully fund the program, this additional source of funding isn’t enough to replace comprehensive insurance coverage, as it isn’t designed to do so.
Treatment of perinatal mood disorders doesn’t require costly research, a quest for a cause, and a search for a cure—we know what causes it, and generally how to resolve it. Many patients do well on medications and therapy, and eventually go on to lead active, happy lives with a brief note in their medical records. Under the Affordable Care Act (ACA), treatment for a perinatal mood disorder had no long-term implications for insurance eligibility or costs. Depending on the Senate’s approach to the bill and the ultimate reconciled version, that could change—people may find it challenging to get insurance, or could have difficulty paying for it, because of their combined history of pregnancy and perinatal mood disorders.
Concerns about access to care don’t just involve what insurance will cover and whether the government will appropriate funds to improve access. Another looming issue is CHIP—the Children’s Health Insurance Program, which extends Medicaid coverage to eligible children. More than eight million children are enrolled in the program, which could find itself a target for funding cuts if the government transitions to a Medicaid block granting system, as threatened under the AHCA. Two of the Texas bills addressing perinatal mood disorders, for instance, rely on some combination of Medicaid and CHIP coverage to protect access for low-income women and children, and might need to seek alternate funding methods.
What’s heartbreaking about threats to health-care funding, says Bombaugh, is that they may drive patients back into the cone of silence. Perinatal mood disorders aren’t widely talked about, and many of the patients she interacts with—and hears about—experience shame, saying they feel alone, like they’re bad parents or that they need to just push through.
That’s dangerous, because like any untreated mental health condition, perinatal mood disorders can turn severe, or even fatal. Just as advocacy groups started to push back on stigma, health insurance reform encouraged people to get treatment and remain proactive about managing their mental health. Changes to insurance regulations could put patients and care providers in a terrible position—how do you get care for a treatment you’re ashamed to have, when seeking help might cost you thousands of dollars a year in premium increases?
That’s the challenge in front of advocates pushing legislators to provide early intervention for perinatal mood disorders in their states, and for legislators scrambling for funding and regulatory clarity. This is a bipartisan issue, with broad support across the political spectrum, notes Pennsylvania state Sen. Camera Bartolotta (R), but the machinations of congressional Republicans could obstruct key funding and other provisions states are counting on.
Bombaugh also speaks to concerns about what health-care reforms may mean for mental health parity in the United States in general, not just in this arena. The ACA made tremendous strides for mental health parity, including requiring mental health as one of the ten essential benefits listed in the bill. The House version of the AHCA, with its state waiver program, would allow individual states to strike the mental health coverage requirement. In turn, that may include coverage for new parents struggling with perinatal mood disorders, and it could create a ripple effect of developmental delays, stress, and even maternal suicide.
“Postpartum depression hits anybody,” said Bartolotta. “It doesn’t matter what your economic level is, your race, your political persuasions, any of those. It’s truly a psychiatric issue, something that can be addressed and treated.”
Symptoms of perinatal mood disorders can include generalized anxiety, worry, sadness, fear, insomnia, and irritability lasting more than seven-to-ten days within the first year of a birth. You can contact your primary care provider or an organization like PSI for help. PSI maintains a “warmline” at (800) 944-4773, answering messages left within several hours to connect clients with resources.