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Kaiser Health News - Mon, 05/09/2016 - 9:12am
Categories: Health Care

First Edition: May 9, 2016

Kaiser Health News - Mon, 05/09/2016 - 6:36am
Categories: Health Care

Policies For Transgender High School Athletes Vary From State To State

CommonHealth (WBUR) - Mon, 05/09/2016 - 5:17am

Justin Bonoyer standing in the athletic field at Ponaganset High School. (Jesse Costa/WBUR)

Crack. A bright pink aluminum bat connects with a fluorescent yellow softball, sending it toward woods that border Ponaganset High School in northwest Rhode Island. The left fielder runs in and makes the catch.

“Two down ladies, two down,” a player calls.

This is home field for Ponaganset’s Lady Chieftains, except, it seems, the team is not all ladies.

Justin Bonoyer, a stocky 5-foot-5-inch player with a shock of blonde hair, plays right field. Justin was Elise to his coaches until a few weeks ago, although he’d already come out as transgender to most of his teammates.

“I’m a guy,” Justin says. “It’s the same as if a guy who’s not trans went and played on a girl’s softball team.”

Well, sort of. There are separate rules for transgender athletes. Rules so different from state to state that some high school athletes like Justin can try out for any team they choose while others need sex reassignment surgery before they can sign up.

There’s a lot of attention on bathrooms in the debate about transgender rights. The next battleground may be locker rooms, basketball courts and soccer fields. For high school students, the debate centers on Title IX, the federal law that bans discrimination based on gender. Does it also ban discrimination based on gender identity?

We’ll lay out the arguments in a minute. First, a little more about Justin.

From Elise To Justin

Justin started telling close friends late last year that he was male. He came out to his mom one day in the dead of winter, at school.

Julie White was working the lunch line. She recalls leaning over the metal counter to greet her child who “walked up to me and said ‘Mom, I have something to tell you, I’m trans.’ ”

White did not expect the announcement, but looking back, she says there were signs: the Barbies Justin tossed aside in favor of building toys or mud pies, things White calls “boys’ stuff.” She shifts in her chair at a coffee shop to look at Justin.

“Everybody who knows you has said ‘Oh I’m not surprised, I’m not surprised at all,’ ” White says. “Yeah,” Justin agrees, with a nod.

Before Justin came out, friends had cheered as Elise joined the wrestling team and won a few matches against bigger, heavier boys. Then last summer, at the beginning of her junior year, Elise decided to play football as the only girl on the team. White says coaches did not return calls about how to sign up.

“So then we showed up at practice and basically you told them ‘Hi, I’m here’ and you were a linebacker,” White says with a smile. “No I wasn’t,” Justin says, with a slight grimace. “What were you?” White asks. “I was a lineman,” Justin says correcting his mom. “OK, sorry,” Julie says with a short laugh.

Now Justin plans to suit up for football in August as one of the boys, but isn’t sure whether some of his teammates will object.

“It could blow up in my face a bit because a lot of them are very conservative,” Justin says, speaking slowly. “I can’t imagine that they would accept the fact that I’m coming out as trans.”

White worries about her son in their small village of Chepachet where the short main street includes one of America’s oldest general stores. But she’s proud of Justin, too.

“I really wish I had a quarter of my kid’s confidence — at 16 years old?” White pauses, her words catching in her throat. “It takes my breath away.”

Justin is being cautious this spring. He chose softball over baseball, because he thought the girls would be more accepting of him as transgender. Justin says many of the guys who refused to play with a girl on the football team last fall play baseball this season. For softball, Justin changes in the girls’ locker room, where there are separate changing stalls.

“It’s uncomfortable, but I don’t really want to change with the guys either,” Justin says, “because a lot of them, like the ones from the football team change in there and I really don’t want to be part of that or start anything.”

Justin says he is being cautious by playing softball over baseball this season, hoping the girls would be more accepting of him than the guys. (Jesse Costa/WBUR)

Justin may not be comfortable in a boys’ locker room, but does he have a right to use it? Here’s where Title IX comes in.

Transgender Athletes, Locker Rooms And Title IX

Title IX bans discrimination based on sex in any public or private school or college that receives federal funding. Two years ago, in a report on sexual violence, the U.S. Department of Education (DOE), expanded Title IX protections to include “discrimination based on gender identity or failure to conform to stereotypical notions of masculinity or femininity.”

Some attorneys objected, saying the DOE did not have the authority to reinterpret Title IX, that only Congress can change the wording of a law.

Most federal courts have ruled that transgender students are not protected by Title IX — but that changed in April. A federal appeals panel in Virginia ruled in favor of a transgender student who wants to use the boys’ room at his high school. The 4th Circuit panel told the lower court that it should have deferred to the DOE on including transgender students under Title IX.

Attorneys who support transgender rights say if access to the bathroom of your choice is guaranteed, then locker rooms should be open to trans athletes as well.

“The decision gets us one step closer to a legal recognition of transgender students rights to participate in sports according to their gender identity,” says Erin Buzuvis, a professor at Western New England University School of Law.

Fierce debates about bathrooms and locker rooms continue in many school districts. Jeremy Tedesco, an attorney at the conservative Christian legal network Alliance Defending Freedom, says schools have the right to balance the needs of many students against one.

“Everyone’s privacy interests are paramount in these kinds of settings,” Tedesco says, “so the school can’t just set aside all the girls in their school, their privacy interests, because they have a transgender boy who wants to use the girls’ facilities.”

The “boy” Tedesco mentions would be a transgender girl, following the DOE guidelines. Tedesco says many schools would prefer that transgender students change in or use a single unisex bathroom. But the DOE has said that’s not sufficient. It has threatened to withhold money from schools that do not let transgender girls into the girls’ bathroom or transgender boys into the boys’ room.

That’s a glimpse of the Title IX debate that will determine how schools treat transgender athletes off the field. On the field, there’s a whole other set of issues.

Playing In Rhode Island, But Not In At Least 7 States

It’s the top of the third inning and Ponaganset has the lead, 2-1. Softball coach Mike Calenda walks from first base back to the dugout as his team takes the field.

“Come out of the dugout like you want to play. Let’s go. We jog out. The only one who walks is the pitcher,” Calenda yells.

Coach Calenda found out that Elise was Justin almost by accident, when his mother texted the coach to say she would be picking up her son, Justin, early one day. The coach told his team about the player’s name change and his switch to male pronouns a few days later.

“Most of our players, when I informed them that Elise was now going to be called and referred to as Justin, already knew and said ‘OK coach, let’s go,’ ” Calenda recalls with a laugh. “I was one of the last — me and another assistant coach — were one of the last [to know].”

Calenda says he didn’t question Justin’s right to play.

“She can be who she wants or he can be who he wants to be,” Calenda says. “I look for players on the team, we treat ‘em all the same. They’re all players on our softball team.”

That pretty much reflects the Rhode Island Interscholastic League rules (see page 11) for transgender male athletes like Justin — they can play on any team they chose, according to their ability. But transgender girls, male to female, must request an eligibility hearing and be cleared by a panel before they can play on a girls’ team. A former Ponaganset star athlete helped draft the Rhode Island rules.

Jen Dandrow (#15, in the front left) in a team photo of the Ponaganset Lady Chieftans basketball team in 1996. (Courtesy)

Point guard Jen Dandrow led the Ponaganset basketball team to a state championship in 1995. The same multi-sport athlete returned to the high school five years ago as Coach Stephen Alexander. Thirty-eight-year-old Alexander doesn’t coach Justin, but they talk a lot. Alexander was the first transgender person many students, teachers and staff at Ponaganset had ever met.

“Trans people can play sports, we can coach sports,” Alexander says. “The stigma associated with us being amoral, immoral, freaks is, is, that’s not, we’re human beings that want a safe space to feel comfortable and participate, just like everyone else.”

Transgender advocates consider Rhode Island an inclusive state. It’s one of 15 in the country that do not require transgender high school athletes to take hormones or undergo sex reassignment surgery before they can play on the team they say fits their gender identity. The website Trans*athlete.com shows 28 states with limited or no policies for transgender athletes and seven states that require hormone therapy or surgery, which is rare for children under the age of 18.

“We’ve got complete and opposite ends of the spectrum, I mean there couldn’t possibly be more different approaches,” Buzuvis, the law professor, says.

She says states that do not allow transgender athletes to play on teams that fit their gender identities could be held in violation of Title IX. If transgender students can use the bathroom of their choice, Buzuvis argues, then why not the court or field?

“If you have a standard that says you have to allow transgender people to use the facility that matches their gender identity, to me it’s logical to extend that same definition of non-discrimination to include sports programs,” Buzuvis says.

Tedesco says that rationale is not fair.

“If we interpret Title IX to allow gender identity as a protected classification, you’re basically saying girls have to compete with boys for the girls sports team,” Tedesco says.”That’s not what Title IX is about.”

The boys Tedesco mentions would identify as transgender girls. They’d have right to play as girls in 15 states, but not necessarily in 35 others.

The LGBT Sports Foundation and other groups advocating for transgender high school athletes is drafting guidelines that would be a model for all 50 states. The guidelines build on a 2010 report that urged inclusion of trans athletes in high school and college sports.

Groups pushing for acceptance of transgender athletes and those who are wary agree on at least one thing: the importance of sport and exercise for all children and teenagers.

The Biological Advantage

Let’s go back to Tedesco’s point about competitive advantage. Just how much stronger is someone who goes through male versus female puberty?

“Men have about 15 percent more, using crude calculations, relative to women, for things that are associated with muscle mass,” says Dr. Joshua Safer who leads the transgender medicine program at Boston Medical Center.

During puberty, Safer says, the average boy develops larger bones, longer limbs and grows taller than someone going through a typical female puberty.

“When a transgender girl, male to female, decides to transition, all those pieces are not necessarily going to be reversed, there’s no way we’re getting around that reality,” Safer says.

Keep in mind, there is already a big range in height and muscle mass among girls and among boys and on many sports teams.

“And the fact that some of these transgender girls will be larger isn’t going to be that relevant and isn’t going to change opportunity to get more girls out onto the field,” Safer says.

Many high school athletic directors may be wary of that claim.

There is one more angle to consider in this complex discussion: More and more transgender youth, with their parents, are seeking hormone therapy before the child begins puberty. (This therapy blocks the surge of estrogen in female to male transgender boys and the surge of testosterone in male to female transgender boys.)

“Thus it is likely that an increasing number of male to female, transgender girls, in high school sports will not have the biological athletic advantage of testosterone,” says Dr. Myron Genel, a professor emeritus of pediatric endocrinology at Yale and an adviser to the International Olympic Committee on transgender athletes.

Some transgender sports enthusiasts say that with all the changes underway, it may be time to establish more co-ed sports with teams based on athlete’s height, weight and physical or mental strengths.

“An athlete is an athlete,” Alexander says. He sees transgender athletes pushing the sports world to rethink sex segregated teams.

“These are the conversations that we’re on the forefront of,” Alexander says, “deconstructing sports and looking at it in a different way so that it reflects society. That way, when kids are growing up and they get into the workforce, it’s everybody working together.”

Beyond Title IX

Transgender athletes will compel schools to answer lots of question, some that fall under Title IX and many that don’t.

Ponaganset High School has a gleaming new gym but many of the state championship banners for girls soccer, tennis and basketball that line the walls go back to the era of Jen Dandrow, now Stephen Alexander. There’s one he wants changed. The 1,000 Point Club includes Dandrow on a list of 17 basketball players who scored more than 1,000 points during their high school career.

Stephen Alexander stands in front of the Ponaganset High School Chieftains 1,000 Point Club banner for basketball players where he is recognized for his achievement as Jen Dandrow. He has asked the school to change his name on the banner. (Jesse Costa/WBUR)

“It’s my name, I own it,” Alexander says. “The school has done so much for me and I’d like to let people know that somebody trans was here.”

The school has refused. Stephen scored all those points as Jen. Ponganset did admit Stephen Alexander into it’s hall of fame. Many schools are just beginning to wrestle with records, awards and honors transgender athletes want assigned to their new name.

It’s a different era than the early 1970s when pressure to boost opportunities for women and girls lead to the passage of Title IX. Gender in sports is still a lightening rod. Justin says being a girl on the football team was way more controversial than being a boy on the girls softball team. Justin isn’t counting on any law to smooth public response to his choices and his identity.

“If somebody has a problem with me because of something I did to hurt them, then I’ll feel bad and have to talk to them about it,” Justin says. “But if somebody’s not OK with the fact that I’m trans or how I dress or the sports I play, that’s their own views and I’m not going change that so I’m just going to ignore it.”

Justin says he’s grateful for a boy on the football team who befriended him, for the chorus director who said he could wear a tux instead of dress to the next performance and to the friends who’ve defended him at school. For Justin, all signs of respect that no law can impose or enforce.

Categories: Health Care

Sharing Your Doctor With A Group

Kaiser Health News - Mon, 05/09/2016 - 5:05am

LOS ANGELES — The women sat in a circle and bemoaned their sleepless nights. It seemed unfair: Their babies weren’t even born yet.

Mayra Del Real’s daughter turned somersaults in her belly every few hours. Alexandria Smith lay awake with heartburn. When she wasn’t propped up with every pillow in the house, she was making bleary-eyed trips to the bathroom.

Sofia Mejia, pregnant with her third baby, laughed knowingly.

“It’s really priceless — those moments in the middle of the night,” she said. “You get used to it.”

These moms-to-be weren’t just commiserating over coffee. They were at a routine prenatal visit — all five of them at once.

The women are participating in a unique type of health care: shared medical appointments. As a group, they see nurse midwife Mercedes Taha for 10 two-hour visits throughout their pregnancies. They take turns being examined, learn more about childbirth and parenting, and as their due dates approach, celebrate with a joint baby shower.

This KHN story also ran in USA Today. It can be republished for free (details).

Group visits like this one at Eisner Pediatric and Family Medical Center in downtown Los Angeles are becoming increasingly common as a way to cut health care costs and improve efficiency. The appointments, for such conditions as diabetes, obesity and liver disease, also ease the shortage of health care providers, especially in low-income communities, and help them avoid repeating the same information throughout the day.

“Group visits have so much to offer busy, backlogged and harried physicians,” said Edward Noffsinger, a Bay Area psychologist and consultant on group visits. “They can get off the treadmill and sit down for one and a half hours with a group of patients.”

The approach has its skeptics, however. Jamie Court, president of the nonprofit Consumer Watchdog based in Santa Monica, California, said educating multiple patients at once may have value, but providing treatment in a group is simply a way to “squeeze the patient and wring costs out of the health care system.”

Click to view slideshow.

Patients can’t develop a meaningful relationship with providers in a group setting, he said.

“It is totally cost-driven,” Court said. “When you are sharing your doctor, that’s not better for your health. It is better for the bottom line.”

Smith, a first-time mom, doesn’t see a downside. She has coped better with the roller coaster of hormones since being part of the group, she said.

“I feel like I’m not the only one, and I’m not crazy,” she said. “I’m just pregnant.”

Research on group visits has been somewhat mixed but several studies have shown they can improve clinical outcomes, reduce costs and leave patients more satisfied. A Health Affairs review published in 2012, based on numerous studies of diabetic group care, found that the visits resulted in fewer hospitalizations and increased productivity among doctors.

Studies of Centering Pregnancy— the same program used in Los Angeles — have found that participants are more likely to breastfeed and less likely to have preterm births than women in individual prenatal care.

Group visits aren’t uniformly covered by insurers, but some plans pay for the care.

Smith, 23, had just learned she was pregnant when she heard about the group visits from a nurse midwife at the Eisner clinic. At first, she worried about discussing her life or exposing her belly in a group of strangers. But she said her boyfriend wasn’t thrilled about becoming a dad and she feared going through the experience on her own.

Mejia, 31, had a different reason for taking part. She’d had one-on-one appointments with her older two children but often felt rushed.

Click to view slideshow.

“Basically it was an hour wait for about five minutes that you see the midwife,” said Mejia, a stay-at-home mom.

At each visit, Smith said she learns something new about keeping herself and her baby safe and healthy: that breast milk can help keep infants healthy, that infants shouldn’t sleep with stuffed animals, that there’s a difference between “baby blues” and postpartum depression.

Education is a critical part of the group visits, said Colleen Senterfitt, COO of Centering Healthcare Institute. “One woman’s question is another woman’s question,” she said.

After taking her own blood pressure and checking her weight one day, Smith leaned back on a makeshift bed in the corner of the room and lifted her shirt. As the other women chatted in the circle, the nurse midwife stretched a disposable tape measure over her stomach. She was on track — 35 weeks.

“Is the baby moving?” she asked.

“Yeah, she’s kicking the air out of me,” Smith said.

Click to view slideshow.

The midwife ran an ultrasound wand over her stomach and zeroed in on the baby’s heartbeat. Smith smiled. “Sounds great,” Taha said, patting her patient’s hand.

But you’ve gained a little more weight than expected, the midwife said.

“I used to be so careful about what I ate,” Smith said. “But the cravings are really bad.”

“OK, we’ll talk about that,” Taha said. “Maybe others are having the same issue.”

Taha said that the group visits give her more time to both teach and connect with her patients — a contrast to the traditional, rushed appointments that lasts just 15 minutes. (The groups typically include eight to 12 patients, though this group had fewer.) “I really get to know the patients in great depth,” she said. “I feel a little more invested.”

Smith, a first-time mom, holds her newborn baby Christianna Nohime Hernandez. (Heidi de Marco/KHN).

Early Thanksgiving morning, Smith’s contractions came just five minutes apart. Soon after she stood up, her water broke. Though her due date was three weeks away, her body was telling her otherwise.

About 12 hours later, she became the first in the group to give birth. She had a girl, just under 6 pounds. She named her Christianna Nohime Hernandez.

“One of the first things that popped into mind is I need to let all the girls in the group know,” she said.

A few months later, the women gathered for a reunion at the Eisner center. Taha congratulated each of them and they celebrated with chocolate cake as they talked about their babies’ births.

“I’m not gonna lie,” Smith said. “It was painful.”

The other women nodded. Then Smith looked at her new friends, each holding their babies in their laps. “But we did it,” she said.

Blue Shield of California Foundation helps fund KHN coverage in California.

Categories: Health Care

States Urged To Reduce Pregnancy-Related Deaths

Kaiser Health News - Mon, 05/09/2016 - 5:00am

The relatively high percentage of American women who die as a result of pregnancy, which exceeds that of other developed nations, is prompting a new national prevention campaign that is relying on the states to take a leading role.

The key element in that effort is to encourage all states to go beyond the information provided on a typical death certificate by having mortality review panels investigate the causes behind every maternal death that occurs during pregnancy or in the year after delivery.

The hope is the investigations will reveal systemic causes for at least some of the deaths and lead to preventive measures to save the lives of more would-be or new mothers.

This copyrighted story comes from Stateline, the daily news service of the Pew Charitable Trusts. (Learn more about republishing Stateline content)

A number of studies suggest that one in three maternal deaths is preventable.

“It’s hard to do anything about a problem if you don’t have the problem fully defined,” said Cynthia Shellhaas, an associate professor in the division of maternal-fetal medicine at the Ohio State University Wexner Medical Center.

The campaign is led by the Association of Maternal & Child Health Programs (AMCHP), a public health advocacy group, and the U.S. Centers for Disease Control and Prevention.

AMCHP and the CDC want every state that doesn’t have one already to create a maternal mortality panel of medical and forensic experts. They want the panels to collect as much information as possible related to every maternal death, including matters related to prenatal care, other health conditions, use of medications, drug and alcohol abuse, violence and medical procedures performed.

They also are encouraging states to standardize the data they collect. And they will provide a digital application to help them collect it, to make it easier to analyze the data for possible trends and remedies.

About half the states — including California, New York and Texas — already have panels, although each currently devises its own ways of classifying information and determining which cases to investigate.

For example, some consider as maternal any death up to 42 days after a pregnancy. Others examine any death up to a year after delivery.

High U.S. Rate

In the U.S., there are 18.5 maternal deaths for every 100,000 live births, according to the Institute for Health Metrics and Evaluation at the University of Washington, which tracks mortality trends worldwide. (For African-American women, the rate is three times higher, according to the CDC.) The CDC says that about 700 maternal deaths occur in the U.S. every year.

The rate is down from a recent peak — in 2009, when it was 22 deaths per 100,000 — after rising steadily for more than a decade.

But preliminary numbers suggest that maternal deaths are again on the rise after 2013, the institute said. The death rate is significantly higher in the U.S. than in other developed countries. For example, the rate is 8.2 in Canada and 6.1 in the United Kingdom and Japan.

There are several possible reasons for the higher U.S. rate, including better reporting, mothers giving birth at older ages (increasing the odds of pregnancy-related complications) and the growing percentage of expectant mothers with untreated chronic conditions such as obesity, hypertension and diabetes. The upsurge in opioid overdoses also may be a factor.

Maternal deaths often signal broader health problems among expectant and new mothers.

The Joint Commission, a nonprofit that accredits health care organizations and programs, calls maternal deaths “sentinel” events. “For every woman who dies, there are 50 who are very ill, suffering significant complications of pregnancy, labor and delivery,” Dr. William Callaghan, a senior CDC scientist who studies maternal morbidity, said in the Joint Commission’s 2010 alert.

Renewed Effort

The notion of investigating the deaths of mothers to prevent them isn’t new.

Medical societies in some large cities and states began establishing maternal mortality panels in the 1930s, when the maternal mortality rate was more than 600 deaths for every 100,000 live births.

Even then, there was a strong sense that many of the deaths could be prevented through improved medical and hygienic practices.

The work of those panels, combined with the Social Security Act of 1935, the advent of antibiotics, advances in obstetrics and medicine in general, and the trend toward more hospital births, led to a precipitous drop in the mortality rate through the early 1960s.

Many of the review panels disappeared. But as rates started rising again the late 1990s, panels began to resurface. David Goodman, the senior scientist for the CDC’s Maternal and Child Health Epidemiology Program, estimates that at least 20 states have panels and another dozen are creating them. Some states, including Illinois, have additional maternal mortality panels that focus on violent deaths.

Most of the mortality panels are appendages to state health departments, although Goodman said most operate with little state revenue. They rely instead on the financial contributions and participation of its volunteer members, which usually includes doctors, coroners, lawyers and even police officers.

Some states also have mortality review panels for fetal, infant and child deaths.

Beyond Death Certificates 

Although death certificates usually provide a cause of death, the quality of the information varies greatly from state to state.

The certificates lack the level of detail that would help hospitals and other providers make adjustments that could prevent recurrences, Goodman said.

For example, he said, a death certificate may indicate that a new mother might have died as a result of an infection. But a deeper examination of her case and similar ones could reveal deficiencies in the sterilization of surgical equipment in hospital obstetrics units.

Something like that happened in California. Evidence revealed by the California mortality review panel led to revised protocols in the handling of post-delivery hemorrhages in all California hospitals beginning in 2008.

Barbara O’Brien, program director of the Office of Perinatal Quality Improvement at the University of Oklahoma Health Sciences Center, said that evidence collected by her state’s mortality review panel has led to the use of compression devices for all pregnant women undergoing cesarean sections to reduce the risk of developing a deep vein thrombosis — a blood clot, usually in the leg, that can be fatal.

The panels turn to many sources of information, including autopsies, hospital and provider medical records, and, in some cases, records from police and social service agencies.

Some states have laws that give the panels access to those records, but not always. “If you want to go to the provider’s office who provided prenatal care [in Oklahoma] they aren’t required to give you the records,” O’Brien said.

Dr. Shellhaas of Ohio, who oversees her state’s maternal mortality panel, said it usually waits two years before delving into a case to allow any civil lawsuits to be resolved, which removes an impediment to getting the necessary documents.

AMCHP and the CDC are testing the new data collection system in a dozen states. Eventually it will be made available to all states, thanks in part to funding from the pharmaceutical giant Merck & Co. Inc., which is engaged in a $500 million, worldwide campaign to improve maternal health and reduce maternal deaths.

AMCHP also plans to create an Internet portal to help states communicate with each other on issues related to maternal health and mortality, said Lori Tremmel Freeman, AMCHP’s CEO.

Categories: Health Care

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