This week at CBPP we focused on family income support, state budgets and taxes, the federal budget, food assistance, housing, and health care.
Nearly half of the nation’s uninsured people who are eligible for Medicaid or the Children’s Health Insurance Program (CHIP) live in families with at least one school-age child, research shows. That makes schools a good place to reach uninsured families. Our new guide details the lessons learned — the successful models and the challenges — from years of school-based outreach.
Earlier this month I attended the International Association of Law Libraries (IALL) annual course on law and legal information. This year’s course was held at the University of Oxford in the United Kingdom and the theme was Common Law Perspectives in an International Context. In addition to excellent lectures on common law in the UK, there were comparisons to civil law systems and issues in international law. A last minute addition on Brexit was a big crowd pleaser, no surprise there.
Outside the lecture hall, I was able to visit two Oxford libraries. The first, the Bodleian Library, is highly trafficked with gallery space for special collections but did not allow pictures. The second, the Codrington Library at All Souls College, is a little more obscure but welcomed the camera. The latter is the subject of this week’s Pic of the Week.
Unusual for Oxford, All Souls College does not have its own students but it does accept fellows. From an American perspective, this would be equivalent to being a research institution without any undergraduates. Fellowships here are quite competitive, averaging only two awarded each year. Also unusual for Oxford, the Codrington Library does admit all members of the university to access its reading room and collections.
Upon entering the main quadrangle of the college, one immediately sees a Christopher Wren-designed sundial above the main entrance to the library. Beyond the walls looms the Radcliffe Camera, part of the Bodleian Libraries.
I was interested in this library as it is known for its law collection and because William Blackstone was a Fellow of All Souls College. In addition to his interest in law, Blackstone had a keen interest in architecture and is credited with the completion of the Codrington Library’s main reading room in 1756. It is believed Blackstone initiated the organization of books in the reading room according to his own classification system.
The collection numbers approximately 185,000 volumes, one-third of which are considered rare, i.e., printed prior to 1800. The main subjects are law and history. Collection development is responsive to the needs of All Souls’ Fellows. Attempts are made to avoid collection duplication with other Oxford colleges, especially the larger Bodleian Law Library. The Codrington has been known to acquire titles that are out of reach of other Oxford libraries, thanks in part to a well-endowed book budget.
Puberty is no picnic, even in the best of circumstances. Once the sex hormones estrogen or testosterone kick in, there’s no turning back: Here come breasts and periods, Adam’s apples and acne. It’s a tough passage for many kids, but for some — transgender youth whose bodies don’t match their gender identity — puberty can be unbearable.
For one Oakland family, their daughter’s path was clear from the time she was 3. Her birth certificate said “male,” but the child would always say she wanted to be a girl, and that soon became, “I AM a girl,” said the mother, who asked that her family’s name not be used to protect her daughter’s privacy. She recalled a day when the girl wept in frustration trying to fashion a skirt out of some t-shirts.
“Finally I just said, ‘Honey, do you want a dress?’’ and they went to a store and bought one. “I literally thought she was going to faint or hyperventilate,” said the mother. “She couldn’t sit still, she was so excited and so happy. It was a moment of pure joy for her, and also a turning point,” she said.
She was happy growing up and attended a progressive school in the San Francisco Bay Area as a girl. But when she was approaching puberty, she became very nervous, “worried about getting facial hair or watching her shoulders get broader. It was all very painful for her,” her mother said.This story also ran in The Daily Beast. It can be republished for free (details).
The child was experiencing what’s known as gender dysphoria, a DSM-5 diagnosis of significant ongoing distress, with the feeling of being assigned the wrong gender at birth. Researchers at Harvard recently found that transgender youth are at a much higher risk for mental disorders, including depression, anxiety, suicidal thoughts and self-harm. They are more than twice as likely as non-trans youth to be diagnosed with depression (50.6 percent vs. 20.6 percent) or suffer from anxiety (26.7 percent vs. 10 percent).
“These kids are saying to the world, ‘I was born in the wrong body, and there’s something just not right about living this way,’” said Scott Leibowitz, head child and adolescent psychiatrist at the Ann & Robert H. Lurie Children’s Hospital of Chicago.
Blockers ‘Safe and Effective’
Full-blown puberty is irreversible, but for transgender children, it’s no longer inevitable. By taking a gonadotropin-releasing hormone (GnRH) agonist, secretion of the sex hormones can be stopped and the onset of puberty suppressed, so that the body does not develop secondary sex characteristics. This has been done safely for decades to suppress sex hormones in children who develop too early, a condition known as precocious puberty. Suppressors have also been used to treat endometriosis, uterine fibroids and prostate cancer.
It was only in 2008 that the Endocrine Society approved puberty suppressors as a treatment for transgender adolescents as young as 12 years old. The Society, with members in more than 100 countries, has since declared that the intervention appears to be safe and effective. In 2011 the World Professional Association for Transgender Health (WPATH), also issued Standards of Care for the treatment of patients with gender dysphoria, which include puberty suppression.
There are few reported side effects to this off-label use of sex hormone suppressors. Despite early concerns that blocking sex hormones might harm bone development, a recent study from the Netherlands found no evidence of long-term effects on bone mineral density. If the suppressors are halted, puberty resumes as if there had been no treatment.
Data on the use of puberty blockers is scarce, but in the past decade or so, it’s believed thousands of transgender youth and their families have chosen to suppress puberty to give adolescents a time-out while they figure out the next step in their development.
A St. Louis, Mo., child was classified as female at birth, one of a set of twin girls. But the parents had been discussing puberty blockers with him since he was seven years old, after he had begun dressing as a boy and showing more masculine traits.
“I remember watching a documentary where he learned what blockers were and we talked about it and he was sure that’s what he wanted when the time came,” said his mother, who also asked that the family’s names not be used to protect her child’s privacy.
“As soon as he got breast buds, it was like the panic button was hit,” the mother said. “He was quickly and very intensely uncomfortable and afraid. He would cry, knowing that this was the beginning of something that he didn’t want, that he knew wasn’t right for him,” she said.
In March, after the boy turned 11, a pediatric endocrinologist prescribed the sex hormone suppressor Eligard, an injection that he receives every four months. According to his mother, because they intervened early, the unwanted breast buds receded quickly, along with her son’s depression and anxiety. “I don’t know what we would have done if we were not able to stop puberty so he doesn’t have to feel in constant conflict with his own body,” she said.
So far, according to the mother, the biggest problem their family has faced has been trying to get insurance coverage for her son’s treatment. She said they have been lucky to obtain the injections at cost — $500 per shot — rather than the $1,500 to $2,000 per shot that the therapy typically costs. Her husband’s employer, which self-funds its medical insurance plan, chose a clause that excludes transgender care.
That kind of exclusion could change, especially since the Obama Administration recently issued final regulations on Section 1557 of the Affordable Care Act that ban the denial of health care on the basis of gender identity in programs that receive federal funding. The rule could help people who feel they have been discriminated against to bring complaints or lawsuits, according to the Transgender Law Center in Oakland, Calif.
In 2014, Oregon became the first state to provide Medicaid coverage for adolescents receiving puberty blockers. Medicaid programs in other states, including New York and California, have also expanded transgender healthcare coverage, although that does not mean that puberty blockers always are covered.
How Early is Too Early?
Treatment with puberty blockers gives transgender children a breather so they can continue to mature and decide whether they will pursue treatment with cross-sex hormones or gender reassignment surgery. For many families, the question is not whether to intervene with blockers, but how early to start.
Because the onset of puberty varies so widely — as early as age 9 for some — suppression can begin at different ages. And that’s prompted some disagreement within the field — the “age versus stage” debate — about when to begin, according to Leibowitz. Most often blockers are initiated at the first visible signs of development as measured by the Tanner Stages, a scale of sexual maturation developed by pediatrician James Tanner. The trigger for suppression is usually Tanner stage 2, when pubic hair and breast buds appear.
“If you are able to suspend puberty as soon as it happens you’re optimizing the benefits that it can bring physically,” said Leibowitz. Starting early may alleviate the need for surgical breast removal or voice modification therapy later on. It also makes it far easier for transgender teens to fit in. “That ability to blend in and be perceived as the gender that they identify with is associated with long-term psychological benefits,” said Leibowitz.
But does that mean that 9- or 10-year-old transgender kids should be started on puberty blockers? Even though the treatment is reversible and is considered safe, Leibowitz said some clinicians argue the age issue is important because less is known about very early interventions. How long can puberty be safely suppressed? And if the next step is transitioning with cross-sex hormones, at what age should that begin?
Of course, there is no treatment at all unless the parents of transgender children agree. “For most of my clients [who are minors], the issue revolves around whether they can start hormones or puberty blockers without parental consent, and the short answer is ‘No,”’ said Danielle Castro, a psychotherapist and project director at the Center of Excellence for Transgender Health at the University of California, San Francisco.
Castro said families of some transgender youth refuse the intervention because they believe their children are “just going through a phase.” A study in 2008 found that 43 percent of very young children who experienced gender dysphoria no longer felt that way after adolescence. The 27 percent who remained dysphoric were the ones who had felt that way most strongly when they were young.
Young children may indeed change their minds, but gender identity seems to be fixed by the time kids have reached puberty. The Endocrine Society finds that transgender adolescents grow up to be transgender adults “100 percent of the time.” Dr. Stephen Rosenthal, director of the Child and Adolescent Gender Center at UCSF, agrees: “Children who meet the mental health criteria for gender dysphoria in adolescence are likely to be transgender for life.”
In a recent study of 70 participants all the adolescents who had been given puberty blockers went through with sex reassignment.
The Standard of Care
Even though the Oakland family had agreed in advance that their daughter would start on blockers at the right time, “we had to reassure her constantly that we wouldn’t let it go too far,” she said.
When she turned 13, the girl started receiving monthly injections of Lupron, a widely prescribed sex hormone suppressor. “As soon as she started, you could just see the relief in her,” said the mother. “You could see it in her demeanor, in her mood; it was just a huge weight off her shoulders,” she said.
The family’s insurer, Kaiser Permanente, covered the treatment. Puberty blockers are considered “standard of care in the appropriate clinical circumstances,” said Erica Metz, medical director for Transgender Health at Kaiser Permanente Northern California. According to Metz, the treatment “gives patients and their families time to work with their mental health and medical providers to determine if it is appropriate to start transitioning.”
When the girl was 14, she started taking estrogen — the next step in her male-to-female transition. Instead of growing facial hair and a male physique, she developed breasts and some curves. Her voice didn’t deepen, and she doesn’t have an Adam’s apple.
The mother described her daughter as a social, outgoing and well-adjusted teenager. She knows the grim mental health statistics for transgender people — 41 percent have attempted suicide, nearly nine times the national average — and she doesn’t want to imagine a world where her daughter would be without puberty blockers, a medical intervention that she called a “lifesaver.”
“The thought of her having had to go through male puberty, I think it would have destroyed her mental health and well-being,” the mother said.
Kids from less affluent homes, even when they have health insurance, are not as likely as others to get vision screenings that can identify conditions like lazy eye before the damage becomes irreversible, a new study found.
Researchers at the University of Michigan examined commercial health insurance claims data between 2001 and 2014 for nearly 900,000 children from birth to age 14. They tracked how often kids at different family income levels visited ophthalmologists and optometrists and the diagnosis rates for strabismus (cross-eyed or wall-eyed) and amblyopia (lazy eye).
The two conditions are relatively common, serious eye diseases in children. Because the eyes are seeing different things, the brain suppresses the vision in one eye. If not corrected by age 10, either condition can result in permanent vision loss. Treatment generally involves glasses, surgery, eye drops or patches, or some combination.More from this series
Children in families with the lowest net worth of less than $25,000 a year had 16 percent fewer eye care visits than those in the middle-income category of $150,000 to $250,000, the study found. Meanwhile, kids from families with the highest net worth of $500,000 or more had 19 percent more visits to eye care professionals than those in the middle-income group.
Lower income kids were also less likely to be diagnosed with strabismus or amblyopia than children from higher income families. By age 10, an estimated 3.6 percent of children in the lowest income category were diagnosed with strabismus, and 2 percent were diagnosed with amblyopia, the study found. For kids in the highest income bracket, the estimated diagnoses were 5.9 percent for strabismus and 3.1 percent for amblyopia.
“We think that affluence is driving the eye care visit and the visit is driving the diagnosis of eye disease,” said Dr. Joshua D. Stein, the study’s lead author and an associate professor of ophthalmology and visual sciences at the University of Michigan’s medical school.
The researchers estimate that the lack of eye-care visits by lower income children resulted in 12,800 missed cases of strabismus and 5,400 missed cases of amblyopia.
Many children receive vision screening in schools, which wouldn’t appear in the claims data that were analyzed. Children who fail a school vision screening, however, should be referred to an optometrist or ophthalmologist for further testing, and that visit would show up in the claims data.
Less affluent parents may have more difficulty taking time off from work or face transportation challenges getting a child to an eye care provider, said Stein, and there may be fewer eye care providers available in less affluent areas.
Under the health law, services recommended by the U.S. Preventive Services Task Force, an independent panel of medical experts, are covered by insurance without requiring most people to pay anything out of pocket. The task force recommends that children between the ages of 3 and 5 receive at least one vision screening to check for amblyopia. That recommendation is being updated.
Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.