Analysis Health Systems

How the Military Creates a ‘Perfect Storm’ for Eating Disorders (Updated)

Annamarya Scaccia

The military's emphasis on discipline, rank, and teamwork, combined with rule-based conducts, regimented eating, and grueling physical training mirrors the mindset often associated with eating disorders.

UPDATE, May 9, 1:10 p.m.: On May 8, Rewire received a response to a FOIA request from the U.S. Air Force, which reported that, between 2007 and 2012, 865 service members were diagnosed and treated for an eating disorder. During this time, six service members diagnosed with bulimia were discharged without benefits, while 16 service members were discharged with severance pay and 23 service members retired (14 members returned to duty). Of those service members diagnosed with anorexia, seven returned to duty, seven were discharged without benefits, and seven were discharged without severance pay. Eight service members diagnosed with anorexia retired.

When Theresa Larson was 24 years old, she was already leading over 50 Marines through the trenches of war.

It was September 2005. Larson and her combat engineer platoon were deployed to Iraq’s Sunni Triangle, just northwest of Baghdad, in support of Operation Iraqi Freedom III. As First Lieutenant, she oversaw her Marines as they executed conflict efforts in a highly volatile region during one of the United States’ bloodiest wars.

Larson was only in the Marines Corps for a year when she picked up her platoon in 2004, and for two years when she made First Lieutenant. But, as a high performer by nature, her swift rise through the ranks of one of the military’s toughest branches is unsurprising. She excelled in sports and academics during her teenage years in Seattle, revolving her confidence around the recognition she gained. It was a drive toward excellence she continued as a student, Division 1 collegiate softball player, and Naval Reserve Officers’ Training Corps (NROTC) cadet at Villanova University in Pennsylvania.

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But being on a battlefield thousands of miles away from home took its toll on her body and mind. The combat environment she was accustomed to became even more extreme—“pressure on steroids,” as she described it.

To relieve herself from the stress, Larson (née Hornick) would self-induce vomiting four to five times a day, no matter her whereabouts. This was the peak of an illness she developed shortly after picking up her platoon in 2004—bulimia nervosa.

The second most common eating disorder among women, bulimia is defined by recurring episodes of excessive eating (binging) followed by “compensatory behaviors” like self-induced vomiting, digestive supplement abuse, and extreme exercise meant to offset the effects of consuming large amounts of food (purging). Like anorexia nervosa, if left untreated, bulimia can be life-threatening.

“I would find ways to be able to [vomit] because it was like a release for me,” said Larson, one of seven female veterans chronicling their stories for the book, Phoenix: Women Warriors on Resilience, Recovery, and Triumph, which will be published this year. “Bulimia was like getting it out of my system.”

Still, no one around her knew about her eating disorder, she says, despite the telltale swelling around her jaw.

Larson’s struggle with bulimia is not uncommon among service members. Although eating disorders affect 20 million women and ten million men in the United States each year, according to the National Eating Disorders Association (NEDA), studies show a greater prevalence of some eating disorders among military service members.

A 2001 study published in Military Medicine found that, across four of the five military branches, female soldiers were likely to suffer from bulimia at nearly six times the rate of the general population—or 8.1 percent, compared to 1.5 percent of women and 0.5 percent of men—with higher numbers among female Marines (15.9 percent). The same study showed 1.1 percent of female soldiers suffered from anorexia and 62.8 percent suffered from eating disorders not otherwise specified (ED-NOS)—a rate slightly higher than that of civilian women.

Though it is the second smallest military branch, the Marines Corps is the first on the ground in most conflicts, often fighting some of the toughest battle situations of all segments. It also has one of the longest and most difficult training programs: 12 weeks of intense basic training followed by either a 59-day infantry or 29-day combat training course.

In a way, the military can create a perfect storm for triggering an eating disorder, says Dr. John Dolores, executive director of Center for Hope of the Sierras, a ten-bed residential eating disorder treatment center in Reno, Nevada. The emphasis on discipline, rank, and teamwork, combined with rule-based conducts, regimented eating, and grueling physical training mirrors the mindset often associated with eating disorders: a controlling, compulsive strive for perfectionism that thrives “under rules.”

“That perfectionism, that rigidity, is a really big piece to it,” Dolores told Rewire.

Dr. Kim Dennis, CEO and medical director of Timberline Knolls Residential Treatment Center, agrees. As a board-certified psychiatrist working with active-duty and veteran female soldiers, Dennis has observed firsthand the effects that military culture can have on triggering eating disorders, which have the highest mortality rate among mental illnesses. Last February, as part of Eating Disorders Awareness Month, she and Larson had visited the Naval Station in Norfolk, Virginia, to host a seminar raising awareness on the issue.

“A lot of the traits that make a good soldier are also the traits known to be associated with eating disorders,” Dennis told Rewire, adding that the military’s “serve others before you serve yourself” ethos also “plays right into” the illness.

For Larson, this much is true. Only 23 years old when she first picked up her platoon, she was determined to be an exemplary leader. She was, after all, preparing 50-plus Marines for war—leading convoys and academic classes, executing engineering tasks, and conducting weapons and martial arts training on a daily basis.

But as she dedicated herself more and more to her team, Larson began to silently lose herself.

On paper, Larson was perfect. She was physically fit, consistently exceeding the female requirements for the Marine’s physical fitness test (PFT). In order to pass, a female Marine who is 26 years old or younger must run three miles in less than 30 minutes, do a 15-second flex arm hang, or 50 crunches in two minutes.

There’s also the annual combat fitness test, which includes a timed 880-yard crash course, 300-yard shuttle run of combat-related tasks, and 30-pound ammo lifts until one’s elbows lock out.

If she could, Larson would strive to beat the tougher male PFT standards. She wanted to run as fast as the guys, to get as many pulls up as the men, because that’s what she was taught a leader “was supposed to do”—especially if you’re a female Marine. It didn’t matter how fatigued and exhausted she became from long hours of working, studying, and training every day, she “couldn’t show weakness” or if she gained weight.

“I was scared of gaining weight. I was scared to not look thin,” Larson, now a physical therapist with her own practice in San Diego, told Rewire. “I was scared to not be the best … I had to do everything perfectly … to set an example for being one of the strongest female Marines.”

There’s been no comprehensive study of eating disorders among male service members, but a 1997 Military Medicine Naval study found that 6.8 percent of active duty Navy men battled bulimia, 2.5 percent struggled with anorexia, and 40.8 percent had ED-NOS. While the ratio between civilian women and men who suffer from eating disorders is ten to one, Dolores believes the burden to meet physical fitness standards “levels out the playing field” because female and male soldiers will “do whatever they can [to meet] these requirements.”

Larson doesn’t blame her battle with bulimia on the Marine Corps, though. Rather, she recognizes, as a person predisposed to disordered eating patterns during college, that the intense environment she chose to serve in contributed to the illness surfacing.

“I’m not going to sit here and point fingers, ‘Oh, it’s my fault’ or ‘Oh, it was the Marine Corps’ fault,'” Larson said. “It just was.”

Before deploying to Iraq, Larson tried to get help, but her roommate and her roommate’s friend told her to “keep it on the hush hush.” If she admitted to having bulimia, they said, then she may not deploy, or, worse, she might get discharged from the Marines. She received a similar warning from a psychiatrist she saw while on base overseas; the  psychiatrist was, Larson says, ill informed about eating disorders.

It was hard, she says, to deal with her illness. She knew she was suffering, but she didn’t want it to get in the way of her deployment—of something she “worked so hard to be a part of” for the last two years.

“It really was an internal, invisible battle going on,” Larson said. “All of a sudden it was like I had to turn off that sense of taking care of myself and be like—excuse my language—‘Screw it and do it … I can’t let this disease get in my way.'”

“Obviously, it did,” she said.

This culture of secrecy in the military is not so far-fetched. Thirteen years prior to Larson telling me her story—one she’s shared often as a public speaker—AlterNet published a scathing piece contending the military fails its female cadets suffering from eating disorders. Several women interviewed for the October 2000 article recalled pressure and stress to meet standards, a lack of support, and inadequate treatment for their disorders—a common theme among service members with mental illnesses.

According to the AlterNet article, the military failed to recognize the high prevalence of eating disorders in their ranks as culled by studies at the time.

Not much has changed. While survey-based studies showed significantly higher eating disorder rates among service members, a 2008 report from the U.S. Army Research Institute of Environmental Medicine examining nine years’ worth of medical information revealed conflicting numbers. The results of the review showed that only 1.76 percent of female service members were diagnosed with an eating disorder between 1998 and 2006, per data from the Defense Medical Epidemiology Database.

Despite this difference, the review’s authors noticed a pointed increase in eating disorder diagnoses throughout the years studied, with Marines comprising the highest percentage of diagnosed anorexia cases. It’s a steady pattern reflected seven years later: According to Department of Defense spokesperson Lt. Col. Cathy Wilkinson, military clinical data shows 771 new cases of eating disorder diagnoses—which includes pica disorder, rumination disorder, and psychogenic vomiting—for the 2013 fiscal year. That’s 22 cases more than the fiscal year before, which saw 749 new diagnoses. In the 2011 fiscal year, there were 728 new cases.

The authors also admitted their study faced several limitations, including that it only reflected data on members evaluated in clinics, which is an important admission to make, no matter how undermining to their research. As the authors recognized, eating disorders are complicated, serious illnesses that are widely misunderstood, underdiagnosed, and undertreated worldwide—”thus,” they wrote, “leading to an imminent under-representation of cases being diagnosed compared to what may actually exist in the overall military.”

In Dennis’ view, both fear and the military’s hand-in-hand structure can attribute to the disparity between military medical data and survey-based studies. Unlike civilian life, where the Health Insurance Portability and Accountability Act (HIPPA) shields employers from knowing a worker’s medical history, military supervisors are directly involved in decisions about a soldier’s medical treatment, which can potentially have “very serious” career implications for a service member seeking recovery help.

This has particular poignancy for male soldiers. Since eating disorders are historically seen as a “women’s disease,” Dennis emphasized, active duty men experience more difficulty seeking treatment while working in an environment that “aggressively promotes” masculinity.

The differences between the data are at least recognized by Army medical professionals. The 2011 Combat and Operational Behavioral Health textbook, published by the U.S. Army Medical Department’s Borden Institute, states in its chapter on eating disorders that such a discrepancy can result from a variety of factors, including disordered eating resulting from attempting to meet the Physical Fitness Assessment, under-reporting due to “fear of adverse career actions,” screening out prior to enlistment or discharging when eating disorders “become evident,” and service members concealing their eating disorder in order to deploy, “because operational and combat experience can be an important step toward promotion.”

“We have been working hard at the [Department of Defense] to overcome stigma on seeking mental health, and have made a lot of positive steps towards reducing it,” Wilkinson told Rewire, “but we still have more work to do.”

For Larson, the turning point came when she was leading “a huge operation” during the Iraqi mission. The execution went well, but she knew she wasn’t as alert as she could have been. Lives depended on her, but there she was, depressed, dehydrated, and malnourished.

Nearly three months after deploying, Larson decided to say something about her illness. She was “hit hard,” she says, with the realization that others were hurting—her father, who she told about the illness prior to deployment, wrote her a letter pleading she’d find help. Larson still couldn’t admit she needed to take care of herself, though—that her illness was a problem—because it was “ingrained” in her “from day one” that an excellent Marine takes “care of everyone else” first.

In late November 2005, after telling her commander about her struggle with bulimia, Larson was medically evacuated from the Iraqi war zone.

For 12 weeks, Larson underwent outpatient treatment for her illness.

During this time, she said her superiors and fellow Marines treated her like a “disappointment.” Despite her high performance and her positive reputation, she was made to feel—and did feel—like a failure for “leaving her Marines” in a combat zone, even though she was suffering with an illness.

“That was probably the hardest thing,” Larson told Rewire. “It was like a big slap in the face.”

A few months later, in October 2006, Larson was honorably discharged from the Marine Corps. According to a Department of Defense document provided by Wilkinson, after a wounded or ill service member receives treatment, the military’s Medical Evaluation Board and Physical Evaluation Board will determine whether they’re reintegrated into or separated from the service—a decision that can be appealed—in a process that can last up to a year. This determination, said Wilkinson, is based solely on whether a solider is unfit to “perform the duties of the member’s office, grade, rank or rating because of disease or injury.”

Being discharged for her eating disorder still perplexes Larson. After all, she was a high-performing Marine with good fit evals and two service medals. “Maybe if I said something when I wasn’t at war, it wouldn’t have been an issue,” she told Rewire, “but because I was medevac’d for it, taken out of the war zone, come back having to get treatment, I don’t know. It’s still something that very much boggles my mind.”

Larson says the road to recovery was difficult at first. After administratively separating from the Marines, Larson invested in her own treatment, paying out of pocket for therapy. But, while playing professional softball in Italy for five months in 2007, she said her bulimia symptoms were worsened by the competitive atmosphere. So, after returning in May of that year, Larson underwent additional therapy.

It was then that Larson was able to recover from bulimia. “That was when I just had enough. I’d been through enough already,” Larson told Rewire. “I was able to use the tools I learned in therapy to stop the symptoms.”

Today, Larson, now 32, takes a more holistic approach to her health—living life in moderation and in much more control. She still struggles with body image issues, but she eats when she’s hungry and exercises regularly without overexertion.

“My love of training and food has improved so much. It’s not a fear for me anymore,” Larson said. “I think that really comes from the spiritual belief I have—a strong belief in who I am and loving myself for who I am.”

“This is who I am. This is what God gave me,” she said.

Out of the service for nearly eight years, Larson believes the military still has work to do in understanding eating disorders, both in how they function and how they play out in its ranks. In her work as an advocate on the issue, she says she hears stories quite similar to hers, where a soldier’s battle is treated as “a threat” and with little support.

Dolores and Dennis concur. The two experts believe a public conversation and stronger stance on supporting their soldiers are needed by the military on the issue, with more education, awareness, and studies conducted across the five branches. (The Borden Institute’s eating disorders section acknowledges the need for further research, such as recording the impact of operational conditions, identifying weight loss patterns pre- and post-deployment, and examining the link between trauma and eating disorders.)

The experts also feel the Department of Defense needs to develop a more specialized treatment plan for eating disorders. Particularly, noted Dennis, there’s an abundance of treatment centers that have programs designed to help soldiers recover from eating disorders “and serve their country to the maximum potential they have.”

“Because treatment works,” she said.

Wilkinson says that’s something service personnel are beginning to recognize. The way mental health is approached in and by the military has improved since Larson’s tour of duty. She cites as an example the increased number of behavioral and mental health professionals on staff. “The difference between 2006 and 2014,” she said, “is light years [apart].”

“Seeking help is a sign of strength,” she said. “People are seeing that.”

News Law and Policy

Texas Lawmaker’s ‘Coerced Abortion’ Campaign ‘Wildly Divorced From Reality’

Teddy Wilson

Anti-choice groups and lawmakers in Texas are charging that coerced abortion has reached epidemic levels, citing bogus research published by researchers who oppose legal abortion care.

A Texas GOP lawmaker has teamed up with an anti-choice organization to raise awareness about the supposed prevalence of forced or coerced abortion, which critics say is “wildly divorced from reality.”

Rep. Molly White (R-Belton) during a press conference at the state capitol on July 13 announced an effort to raise awareness among public officials and law enforcement that forced abortion is illegal in Texas.

White said in a statement that she is proud to work alongside The Justice Foundation (TJF), an anti-choice group, in its efforts to tell law enforcement officers about their role in intervening when a pregnant person is being forced to terminate a pregnancy. 

“Because the law against forced abortions in Texas is not well known, The Justice Foundation is offering free training to police departments and child protective service offices throughout the State on the subject of forced abortion,” White said.

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White was joined at the press conference by Allan Parker, the president of The Justice Foundation, a “Christian faith-based organization” that represents clients in lawsuits related to conservative political causes.

Parker told Rewire that by partnering with White and anti-choice crisis pregnancy centers (CPCs), TJF hopes to reach a wider audience.

“We will partner with anyone interested in stopping forced abortions,” Parker said. “That’s why we’re expanding it to police, social workers, and in the fall we’re going to do school counselors.”

White only has a few months remaining in office, after being defeated in a closely contested Republican primary election in March. She leaves office after serving one term in the state GOP-dominated legislature, but her short time there was marked by controversy.

During the Texas Muslim Capitol Day, she directed her staff to “ask representatives from the Muslim community to renounce Islamic terrorist groups and publicly announce allegiance to America and our laws.”

Heather Busby, executive director of NARAL Pro-Choice Texas, said in an email to Rewire that White’s education initiative overstates the prevalence of coerced abortion. “Molly White’s so-called ‘forced abortion’ campaign is yet another example that shows she is wildly divorced from reality,” Busby said.

There is limited data on the how often people are forced or coerced to end a pregnancy, but Parker alleges that the majority of those who have abortions may be forced or coerced.

‘Extremely common but hidden’

“I would say that they are extremely common but hidden,” Parker said. “I would would say coerced or forced abortion range from 25 percent to 60 percent. But, it’s a little hard be to accurate at this point with our data.”

Parker said that if “a very conservative 10 percent” of the about 60,000 abortions that occur per year in Texas were due to coercion, that would mean there are about 6,000 women per year in the state that are forced to have an abortion. Parker believes that percentage is much higher.

“I believe the number is closer to 50 percent, in my opinion,” Parker said. 

There were 54,902 abortions in Texas in 2014, according to recently released statistics from the Texas Department of State Health Services (DSHS). The state does not collect data on the reasons people seek abortion care. 

White and Parker referenced an oft cited study on coerced abortion pushed by the anti-choice movement.

“According to one published study, sixty-four percent of American women who had abortions felt forced or unduly pressured by someone else to have an unwanted abortion,” White said in a statement.

This statistic is found in a 2004 study about abortion and traumatic stress that was co-authored by David Reardon, Vincent Rue, and Priscilla Coleman, all of whom are among the handful of doctors and scientists whose research is often promoted by anti-choice activists.

The study was cited in a report by the Elliot Institute for Social Sciences Research, an anti-choice organization founded by Reardon. 

Other research suggests far fewer pregnant people are coerced into having an abortion.

Less than 2 percent of women surveyed in 1987 and 2004 reported that a partner or parent wanting them to abort was the most important reason they sought the abortion, according to a report by the Guttmacher Institute.

That same report found that 24 percent of women surveyed in 1987 and 14 percent surveyed in 2004 listed “husband or partner wants me to have an abortion” as one of the reasons that “contributed to their decision to have an abortion.” Eight percent in 1987 and 6 percent in 2004 listed “parents want me to have an abortion” as a contributing factor.

‘Flawed research’ and ‘misinformation’  

Busby said that White used “flawed research” to lobby for legislation aimed at preventing coerced abortions in Texas.

“Since she filed her bogus coerced abortion bill—which did not pass—last year, she has repeatedly cited flawed research and now is partnering with the Justice Foundation, an organization known to disseminate misinformation and shameful materials to crisis pregnancy centers,” Busby said.  

White sponsored or co-sponsored dozens of bills during the 2015 legislative session, including several anti-choice bills. The bills she sponsored included proposals to increase requirements for abortion clinics, restrict minors’ access to abortion care, and ban health insurance coverage of abortion services.

White also sponsored HB 1648, which would have required a law enforcement officer to notify the Department of Family and Protective Services if they received information indicating that a person has coerced, forced, or attempted to coerce a pregnant minor to have or seek abortion care.

The bill was met by skepticism by both Republican lawmakers and anti-choice activists.

State affairs committee chairman Rep. Byron Cook (R-Corsicana) told White during a committee hearing the bill needed to be revised, reported the Texas Tribune.

“This committee has passed out a number of landmark pieces of legislation in this area, and the one thing I think we’ve learned is they have to be extremely well-crafted,” Cook said. “My suggestion is that you get some real legal folks to help engage on this, so if you can keep this moving forward you can potentially have the success others have had.”

‘Very small piece of the puzzle of a much larger problem’

White testified before the state affairs committee that there is a connection between women who are victims of domestic or sexual violence and women who are coerced to have an abortion. “Pregnant women are most frequently victims of domestic violence,” White said. “Their partners often threaten violence and abuse if the woman continues her pregnancy.”

There is research that suggests a connection between coerced abortion and domestic and sexual violence.

Dr. Elizabeth Miller, associate professor of pediatrics at the University of Pittsburgh, told the American Independent that coerced abortion cannot be removed from the discussion of reproductive coercion.

“Coerced abortion is a very small piece of the puzzle of a much larger problem, which is violence against women and the impact it has on her health,” Miller said. “To focus on the minutia of coerced abortion really takes away from the really broad problem of domestic violence.”

A 2010 study co-authored by Miller surveyed about 1,300 men and found that 33 percent reported having been involved in a pregnancy that ended in abortion; 8 percent reported having at one point sought to prevent a female partner from seeking abortion care; and 4 percent reported having “sought to compel” a female partner to seek an abortion.

Another study co-authored by Miller in 2010 found that among the 1,300 young women surveyed at reproductive health clinics in Northern California, about one in five said they had experienced pregnancy coercion; 15 percent of the survey respondents said they had experienced birth control sabotage.

‘Tactic to intimidate and coerce women into not choosing to have an abortion’

TJF’s so-called Center Against Forced Abortions claims to provide legal resources to pregnant people who are being forced or coerced into terminating a pregnancy. The website includes several documents available as “resources.”

One of the documents, a letter addressed to “father of your child in the womb,” states that that “you may not force, coerce, or unduly pressure the mother of your child in the womb to have an abortion,” and that you could face “criminal charge of fetal homicide.”

The letter states that any attempt to “force, unduly pressure, or coerce” a women to have an abortion could be subject to civil and criminal charges, including prosecution under the Federal Unborn Victims of Violence Act.

The document cites the 2007 case Lawrence v. State as an example of how one could be prosecuted under Texas law.

“What anti-choice activists are doing here is really egregious,” said Jessica Mason Pieklo, Rewire’s vice president of Law and the Courts. “They are using a case where a man intentionally shot his pregnant girlfriend and was charged with murder for both her death and the death of the fetus as an example of reproductive coercion. That’s not reproductive coercion. That is extreme domestic violence.”

“To use a horrific case of domestic violence that resulted in a woman’s murder as cover for yet another anti-abortion restriction is the very definition of callousness,” Mason Pieklo added.

Among the other resources that TJF provides is a document produced by Life Dynamics, a prominent anti-choice organization based in Denton, Texas.

Parker said a patient might go to a “pregnancy resource center,” fill out the document, and staff will “send that to all the abortionists in the area that they can find out about. Often that will stop an abortion. That’s about 98 percent successful, I would say.”

Reproductive rights advocates contend that the document is intended to mislead pregnant people into believing they have signed away their legal rights to abortion care.

Abortion providers around the country who are familiar with the document said it has been used for years to deceive and intimidate patients and providers by threatening them with legal action should they go through with obtaining or providing an abortion.

Vicki Saporta, president and CEO of the National Abortion Federation, previously told Rewire that abortion providers from across the country have reported receiving the forms.

“It’s just another tactic to intimidate and coerce women into not choosing to have an abortion—tricking women into thinking they have signed this and discouraging them from going through with their initial decision and inclination,” Saporta said.

Busby said that the types of tactics used by TFJ and other anti-choice organizations are a form of coercion.

“Everyone deserves to make decisions about abortion free of coercion, including not being coerced by crisis pregnancy centers,” Busby said. “Anyone’s decision to have an abortion should be free of shame and stigma, which crisis pregnancy centers and groups like the Justice Foundation perpetuate.”

“Law enforcement would be well advised to seek their own legal advice, rather than rely on this so-called ‘training,” Busby said.

Culture & Conversation Maternity and Birthing

On ‘Commonsense Childbirth’: A Q&A With Midwife Jennie Joseph

Elizabeth Dawes Gay

Joseph founded a nonprofit, Commonsense Childbirth, in 1998 to inspire change in maternity care to better serve people of color. As a licensed midwife, Joseph seeks to transform how care is provided in a clinical setting.

This piece is published in collaboration with Echoing Ida, a Forward Together project.

Jennie Joseph’s philosophy is simple: Treat patients like the people they are. The British native has found this goes a long way when it comes to her midwifery practice and the health of Black mothers and babies.

In the United States, Black women are disproportionately affected by poor maternal and infant health outcomes. Black women are more likely to experience maternal and infant death, pregnancy-related illness, premature birth, low birth weight, and stillbirth. Beyond the data, personal accounts of Black women’s birthing experiences detail discrimination, mistreatment, and violation of basic human rights. Media like the new film, The American Dream, share the maternity experiences of Black women in their own voices.

A new generation of activists, advocates, and concerned medical professionals have mobilized across the country to improve Black maternal and infant health, including through the birth justice and reproductive justice movements.

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Joseph founded a nonprofit, Commonsense Childbirth, in 1998 to inspire change in maternity care to better serve people of color. As a licensed midwife, Joseph seeks to transform how care is provided in a clinical setting.

At her clinics, which are located in central Florida, a welcoming smile and a conversation mark the start of each patient visit. Having a dialogue with patients about their unique needs, desires, and circumstances is a practice Joseph said has contributed to her patients having “chunky,” healthy, full-term babies. Dialogue and care that centers the patient costs nothing, Joseph told Rewire in an interview earlier this summer.

Joseph also offers training to midwives, doulas, community health workers, and other professionals in culturally competent, patient-centered care through her Commonsense Childbirth School of Midwifery, which launched in 2009. And in 2015, Joseph launched the National Perinatal Task Force, a network of perinatal health-care and service providers who are committed to working in underserved communities in order to transform maternal health outcomes in the United States.

Rewire spoke with Joseph about her tireless work to improve maternal and perinatal health in the Black community.

Rewire: What motivates and drives you each day?

Jennie Joseph: I moved to the United States in 1989 [from the United Kingdom], and each year it becomes more and more apparent that to address the issues I care deeply about, I have to put action behind all the talk.

I’m particularly concerned about maternal and infant morbidity and mortality that plague communities of color and specifically African Americans. Most people don’t know that three to four times as many Black women die during pregnancy and childbirth in the United States than their white counterparts.

When I arrived in the United States, I had to start a home birth practice to be able to practice at all, and it was during that time that I realized very few people of color were accessing care that way. I learned about the disparities in maternal health around the same time, and I felt compelled to do something about it.

My motivation is based on the fact that what we do [at my clinic] works so well it’s almost unconscionable not to continue doing it. I feel driven and personally responsible because I’ve figured out that there are some very simple things that anyone can do to make an impact. It’s such a win-win. Everybody wins: patients, staff, communities, health-care agencies.

There are only a few of us attacking this aggressively, with few resources and without support. I’ve experienced so much frustration, anger, and resignation about the situation because I feel like this is not something that people in the field don’t know about. I know there have been some efforts, but with little results. There are simple and cost-effective things that can be done. Even small interventions can make such a tremendous a difference, and I don’t understand why we can’t have more support and more interest in moving the needle in a more effective way.

I give up sometimes. I get so frustrated. Emotions vie for time and energy, but those very same emotions force me to keep going. I feel a constant drive to be in action and to be practical in achieving and getting results.

Rewire: In your opinion, what are some barriers to progress on maternal health and how can they be overcome?

JJ: The solutions that have been generated are the same, year in and year out, but are not really solutions. [Health-care professionals and the industry] keep pushing money into a broken system, without recognizing where there are gaps and barriers, and we keep doing the same thing.

One solution that has not worked is the approach of hiring practitioners without a thought to whether the practitioner is really a match for the community that they are looking to serve. Additionally, there is the fact that the practitioner alone is not going to be able make much difference. There has to be a concerted effort to have the entire health-care team be willing to support the work. If the front desk and access points are not in tune with why we need to address this issue in a specific way, what happens typically is that people do not necessarily feel welcomed or supported or respected.

The world’s best practitioner could be sitting down the hall, but never actually see the patient because the patient leaves before they get assistance or before they even get to make an appointment. People get tired of being looked down upon, shamed, ignored, or perhaps not treated well. And people know which hospitals and practitioners provide competent care and which practices are culturally safe.

I would like to convince people to try something different, for real. One of those things is an open-door triage at all OB-GYN facilities, similar to an emergency room, so that all patients seeking maternity care are seen for a first visit no matter what.

Another thing would be for practitioners to provide patient-centered care for all patients regardless of their ability to pay.  You don’t have to have cultural competency training, you just have to listen and believe what the patients are telling you—period.

Practitioners also have a role in dismantling the institutionalized racism that is causing such harm. You don’t have to speak a specific language to be kind. You just have to think a little bit and put yourself in that person’s shoes. You have to understand she might be in fear for her baby’s health or her own health. You can smile. You can touch respectfully. You can make eye contact. You can find a real translator. You can do things if you choose to. Or you can stay in place in a system you know is broken, doing business as usual, and continue to feel bad doing the work you once loved.

Rewire: You emphasize patient-centered care. Why aren’t other providers doing the same, and how can they be convinced to provide this type of care?

JJ: I think that is the crux of the matter: the convincing part. One, it’s a shame that I have to go around convincing anyone about the benefits of patient-centered care. And two, the typical response from medical staff is “Yeah, but the cost. It’s expensive. The bureaucracy, the system …” There is no disagreement that this should be the gold standard of care but providers say their setup doesn’t allow for it or that it really wouldn’t work. Keep in mind that patient-centered care also means equitable care—the kind of care we all want for ourselves and our families.

One of the things we do at my practice (and that providers have the most resistance to) is that we see everyone for that initial visit. We’ve created a triage entry point to medical care but also to social support, financial triage, actual emotional support, and recognition and understanding for the patient that yes, you have a problem, but we are here to work with you to solve it.

All of those things get to happen because we offer the first visit, regardless of their ability to pay. In the absence of that opportunity, the barrier to quality care itself is so detrimental: It’s literally a matter of life and death.

Rewire: How do you cover the cost of the first visit if someone cannot pay?

JJ: If we have a grant, we use those funds to help us pay our overhead. If we don’t, we wait until we have the women on Medicaid and try to do back-billing on those visits. If the patient doesn’t have Medicaid, we use the funds we earn from delivering babies of mothers who do have insurance and can pay the full price.

Rewire: You’ve talked about ensuring that expecting mothers have accessible, patient-centered maternity care. How exactly are you working to achieve that?

JJ: I want to empower community-based perinatal health workers (such as nurse practitioners) who are interested in providing care to communities in need, and encourage them to become entrepreneurial. As long as people have the credentials or license to provide prenatal, post-partum, and women’s health care and are interested in independent practice, then my vision is that they build a private practice for themselves. Based on the concept that to get real change in maternal health outcomes in the United States, women need access to specific kinds of health care—not just any old health care, but the kind that is humane, patient-centered, woman-centered, family-centered, and culturally-safe, and where providers believe that the patients matter. That kind of care will transform outcomes instantly.

I coined the phrase “Easy Access Clinics” to describe retail women’s health clinics like a CVS MinuteClinic that serve as a first entry point to care in a community, rather than in a big health-care system. At the Orlando Easy Access Clinic, women receive their first appointment regardless of their ability to pay. People find out about us via word of mouth; they know what we do before they get here.

We are at the point where even the local government agencies send patients to us. They know that even while someone’s Medicaid application is in pending status, we will still see them and start their care, as well as help them access their Medicaid benefits as part of our commitment to their overall well-being.

Others are already replicating this model across the country and we are doing research as we go along. We have created a system that becomes sustainable because of the trust and loyalty of the patients and their willingness to support us in supporting them.

Photo Credit: Filmmaker Paolo Patruno

Joseph speaking with a family at her central Florida clinic. (Credit: Filmmaker Paolo Patruno)

RewireWhat are your thoughts on the decision in Florida not to expand Medicaid at this time?

JJ: I consider health care a human right. That’s what I know. That’s how I was trained. That’s what I lived all the years I was in Europe. And to be here and see this wanton disregard for health and humanity breaks my heart.

Not expanding Medicaid has such deep repercussions on patients and providers. We hold on by a very thin thread. We can’t get our claims paid. We have all kinds of hoops and confusion. There is a lack of interest and accountability from insurance payers, and we are struggling so badly. I also have a petition right now to ask for Medicaid coverage for pregnant women.

Health care is a human right: It can’t be anything else.

Rewire: You launched the National Perinatal Task Force in 2015. What do you hope to accomplish through that effort?

JJ: The main goal of the National Perinatal Task Force is to connect perinatal service providers, lift each other up, and establish community recognition of sites committed to a certain standard of care.

The facilities of task force members are identified as Perinatal Safe Spots. A Perinatal Safe Spot could be an educational or social site, a moms’ group, a breastfeeding circle, a local doula practice, or a community center. It could be anywhere, but it has got to be in a community with what I call a “materno-toxic” area—an area where you know without any doubt that mothers are in jeopardy. It is an area where social determinants of health are affecting mom’s and baby’s chances of being strong and whole and hearty. Therein, we need to put a safe spot right in the heart of that materno-toxic area so she has a better chance for survival.

The task force is a group of maternity service providers and concerned community members willing to be a safe spot for that area. Members also recognize each other across the nation; we support each other and learn from each others’ best practices.

People who are working in their communities to improve maternal and infant health come forward all the time as they are feeling alone, quietly doing the best they can for their community, with little or nothing. Don’t be discouraged. You can get a lot done with pure willpower and determination.

RewireDo you have funding to run the National Perinatal Task Force?

JJ: Not yet. We have got the task force up and running as best we can under my nonprofit Commonsense Childbirth. I have not asked for funding or donations because I wanted to see if I could get the task force off the ground first.

There are 30 Perinatal Safe Spots across the United States that are listed on the website currently. The current goal is to house and support the supporters, recognize those people working on the ground, and share information with the public. The next step will be to strengthen the task force and bring funding for stability and growth.

RewireYou’re featured in the new film The American Dream. How did that happen and what are you planning to do next?

JJ: The Italian filmmaker Paolo Patruno got on a plane on his own dime and brought his cameras to Florida. We were planning to talk about Black midwifery. Once we started filming, women were sharing so authentically that we said this is about women’s voices being heard. I would love to tease that dialogue forward and I am planning to go to four or five cities where I can show the film and host a town hall, gathering to capture what the community has to say about maternal health. I want to hear their voices. So far, the film has been screened publicly in Oakland and Kansas City, and the full documentary is already available on YouTube.

RewireThe Black Mamas Matter Toolkit was published this past June by the Center for Reproductive Rights to support human-rights based policy advocacy on maternal health. What about the toolkit or other resources do you find helpful for thinking about solutions to poor maternal health in the Black community?

JJ: The toolkit is the most succinct and comprehensive thing I’ve seen since I’ve been doing this work. It felt like, “At last!”

One of the most exciting things for me is that the toolkit seems to have covered every angle of this problem. It tells the truth about what’s happening for Black women and actually all women everywhere as far as maternity care is concerned.

There is a need for us to recognize how the system has taken agency and power away from women and placed it in the hands of large health systems where institutionalized racism is causing much harm. The toolkit, for the first time in my opinion, really addresses all of these ills and posits some very clear thoughts and solutions around them. I think it is going to go a long way to begin the change we need to see in maternal and child health in the United States.

RewireWhat do you count as one of your success stories?

JJ: One of my earlier patients was a single mom who had a lot going on and became pregnant by accident. She was very connected to us when she came to clinic. She became so empowered and wanted a home birth. But she was anemic at the end of her pregnancy and we recommended a hospital birth. She was empowered through the birth, breastfed her baby, and started a journey toward nursing. She is now about to get her master’s degree in nursing, and she wants to come back to work with me. She’s determined to come back and serve and give back. She’s not the only one. It happens over and over again.

This interview has been edited for length and clarity.