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PUBLIC HEALTH and POLICY NEWS Your Fragile X queries at OPWDD’S IBR The Institute for Basic Research in Developmental Disabilities (IBR), a Staten Island-based division of the New York State Office for People With Developmental Disabilities (OPWDD), held a one-day conference on Fragile X syndrome—centered around questions on Fragile X treatment strategies sent in by before the event. The conference, held April 7, featured Fragile X experts Lauren Moskowitz, Ph.D. of the New York University Child Study Center, the IBR’s Vicki Sudhalter, Ph.D., and Laurie Yankowitz, Ed.D. of HeartShare Human Services of New York addressing specific questions on Fragile X behavior, language development, sensory integration and more. The event, which was co-sponsored by the National Fragile X Foundation and the Fragile X Associations of New York and New Jersey, was attended by over 75 parents, therapists and caregivers of individuals with the genetically caused disability. Retail clinics: medicine’s next big thing? Need non-emergency medical care? Go to the mall. Selling so-called convenient care where everything else is sold, especially at national chain pharmacies, big-box stores and even retail mall storefronts, is a growing wave of the future. Convenient care is exploding for several reasons: • Insurers are now covering vaccines and family physicals at convenient care clinics • More consumers are looking for cheap alternatives to high-deductible private insurance • Millions of first-time ensurees in 2014 by ObamaCare will flock to convenient routine medical care at local pharmacies and shopping malls instead of traditional doctors’ offices • In delivering many services by onsite licensed pharmacists or nurse practitioners, retail chains offer a low-cost alternative to the traditional doctor’s-office/pharmacy visit According to the Convenient Care Association estimates, there are now over 1,400 health clinics inside retail chain stores nationwide—double the number from six years ago. These include 650 MinuteClinics in 25 states run by CVS, and Walgreens’ 372 Take Care clinics. CVS plans 1,500 clinics in 35 states by 2017 (with 150 to open in 2013 alone), and Walgreens is planning double-digit growth in 2013. Target and other retailers, and even some mainstream providers, are following suit—including opening mall storefronts. But convenient care providers are moving to offer much more than flu shots. Walgreens, for example, recently began offering assessment, treatment and management of asthma, diabetes, hypertension and other chronic conditions. Walgreens is also pivoting to meet another major industry change: The move from the current fee-for-service medicine (i.e. responsive medicine) to accountable care organizations (ACOs), (i.e. preventive medicine). As such, its Take Care clinics are now allied with three ACOs, which many see as the healthcare delivery system of the future. “The big shift that I see in the landscape is from one that has historically been a pay-foruse model to one that is really starting to center around outcomes in healthcare,” said Walgreen CFO Wade Miquelon—also predicting that pharmacists will begin writing prescriptions for certain categories of drugs. But one downside to nationally-branded retail convenient care is just that: Branding. One medical error by a single branch could ripple-effect the entire chain nationwide. Violate the ADA law? Pay $240 million In the largest-ever monetary award ever obtained in a lawsuit by the U.S. Equal Employment Opportunity Commission (EEOC), 32 disabled employees of the Texasbased Henry’s Turkey Service were awarded $2 million in punitive damages and $5.5 million in compensatory damages each, for a total of $240 million. The federal jury found that the men had endured years of employee abuse and discrimination, substandard living conditions, verbal and physical harassment and denial of medical care. “The verdict sends an important message that the conduct that occurred here is intolerable in this nation, and hopefully will help to restore dignity and acknowledge the humanity of the workers who were mistreated for so many years,” said EEOC chair Jacqueline Berrien. Less hours, more shifts, equal patient risk According to a new study in the Journal of General Internal Medicine, restricting the number of hours doctors-in-training are allowed to work without rest hasn’t led to more patient fatalities. In 2003, concerns over errors caused by sleepy residents at hospitals led the Accreditation Council for Graduate Medical Education (ACGME) to restrict doctors-intraining to working a maximum of 80 hours per week. The ACGME again restricted residents’ working hours in 2011, when it said shifts can last no longer than 16 hours for the least-experienced doctorssis. The new limits prompted concerns that more changing of patient caregivers, the more errors. But researchers found no such increase over the three years following a rules change that restricted resident doctors’ maximum weekly hours to 80. In fact, the team reports a decline during the fourth and fifth years. Back-to-back national Head Start conferences The Office of Head Start held its 2nd annual National Birth to Five Leadership Institute Conference this past April 28-30 in National Harbor, Maryland, seguing directly into the National Head Start Association (NHSA)’s 40th annual national conference April 30-May 3 in Washington, D.C. The Head Start program, like the Early Intervention program offered by Hamaspik, is relied upon by many in Hamaspik’s target communities for critical kids’ services. FDA after chewing gum?! Seems that Wrigley’s bit off more than they could chew, and that the FDA has a bit of catching up to do. In response to ever-proliferating products containing ever-rising levels of caffeine— some dangerously so—the FDA is now apparently scrambling to protect the public, particularly youth. Among the bizarre array of (some-heavily) caffeinated food products currently being marketed to kids and teens, apparently (and tragically) in response to ever-increasing demand, are jelly beans, marshmallows, sunflower seeds, waffles, waffle syrup (!), oatmeal (!!) and even the new Alert Energy Caffeine Gum from the iconic Wrigley’s. (But after conferring with the FDA, Wrigley’s pulled Alert production, sales and marketing on May 8.) According to the FDA, existing rules never anticipated the current proliferation of caffeinated products. In early May, the FDA announced that it will be investigating the safety of caffeine in these products, particularly its effects on children and adolescents. The announcement comes against the background of ongoing aggressive marketing of caffeine-laced and unhealthy so-called “energy drinks”—itself in the wake of increasing ER visits and hospitalized caused by overdose or abuse of such products. Second weak jobs month for healthcare According to the U.S. Bureau of Labor Statistics, job creation at physician offices rebounded and helped contribute to 19,000 new healthcare jobs in April, but the figure represents a second month that the sector made a relatively weak contribution to the job market. Healthcare employers added 9,900 fewer jobs in March compared with February, and the number held steady last month. The industry, though, has been a reliable source of jobs during the economy’s tepid recovery. The sector added 268,700 jobs since April 2012, an average of about 24,000 a month. Med schools on pace with enrollment target As the U.S. faces a shortage of physicians—potentially more than 90,000 by 2020—medical schools are seeking to counteract the deficiency with higher enrollments. In 2006, the Association of American Medical Colleges (AAMC) issued a recommendation to expand medical school enrollment by 30 percent over its 2002 level of 16,488 students by 2015. Now, according to the AAMC’s most recent Medical School Enrollment Survey, first-year medical school enrollment is expected to meet that goal in 2017-18 with 21,434 enrollees. The announcement is welcome news in light of an expected physician shortage come the 2014 full roll-out of ObamaCare, when an estimated additional 30 million more people will get Medicaid. Feds and dogs In a late-April update, the U.S. Dept. of Housing and Urban Development (HUD) underscored that landlords must allow “reasonable accommodations” for service animals, such as seeing-eye dogs, used by disabled renters—and that standard pet restrictions don’t apply to them. The federal agency’s top received complaints are disability-related. Reverse discrimination suit at deaf-friendly apts. So you build an apartment building, one of the only ones of its kind in the nation, outfitted with all the latest deaf-friendly technology, and invite deaf people to move in. Problem is, the government says that by doing so, you’re discrimiwnating against people who are not deaf. That’s the issue at the heart of the legal battle now swirling around Apache ASL Trails, a housing complex for seniors in Tempe, Arizona that was partially built with federal funds: Because 69 of the 75 units are occupied by the deaf and hard-of-hearing, the federal Dept. of Housing and Urban Development (HUD) is now looking into whether the developer has run afoul of any law. The case has yet to be settled. Feds: Novartis bribed docs to pitch drugs Swiss drug giant Novartis has been accused by federal prosecutors of engaging in a massive and costly organized kickback scheme to essentially bribe doctors to prescribe its brand-name drugs hypertension and diabetes drugs. The government alleges that Novartis salespeople treated doctors nationwide to lavish dinners, fishing trips and other perks in exchange for their favored recommendation of Novartis drugs. The lawsuit, filed in Manhattan federal court, is ongoing. Less juice, same program Recipients of the USDA’s Special Supplemental Nutrition Program for Women, Infants and Children—known informally as WIC—have since October 2009 been able to purchase less than half the juice previously permitted on the public-welfare program. A study by Yale University now says that the reduced allowance has not simply driven recipients to purchase juice or other sugary drinks—a leading culprit in the national obesity epidemic—elsewhere; instead, they seem to be actually drinking less juice. Hamaspik Gazette | April/May ‘13 E11
Autism in The News Dear reader: It’s been a while since we ran our Autism in the News column (apologies about that)—so we’ve got a bit of catching to do. Here’s a collection of autism-related news items that caught our eye in the past couple of months. Two years, 1,000 genetics/imaging studies In late 2012, the annual report of the Interagency Autism Coordinating Committee (IACC) reported that over 1,000 research papers were published in the past two years on the genetics or imaging of autism. However, the IACC acknowledged that it hadn’t done enough to address autism services, indicating that the group will increase its focus on that issue in 2013. Autism blood test? Researchers at Boston Children’s Hospital are working on a blood test that one day may be able to accurately detect autism. The test scans for 55 gene mutations that many children with autism do have but which typical kids do not. Currently, autism is diagnosed primarily via observation, with the earliest diagnosis being made around age 18 months but usually at age four or beyond. An effective blood test would allow doctors to diagnose autism far earlier, even before symptoms appear, allowing kids to get autism intervention services that work better the earlier in life they are started. Babies with autism risk cry differently In a study that might fall into the “something-that-scientists-are-looking-at-but-which-doesn’t-yet-mean-much-at-all” category, researchers at Brown University found subtle differences in the crying sounds made by infants at high and low risk for autism. By running recordings of the babies’ cries through computer analysis, the scientists determined that the high-risk babies cried at higher pitches and also presented subtle acoustic differences too complex to explain here. However, it’s too early to know if there actually is a connection between babies’ cries and autism or why one would exist in the first place—and even if there is a link, the difference between babies with or without autism may be too subtle to notice without computer analysis. For now, the finding may mean that the central nervous system affects the acoustics of crying—and that a central nervous system affected by autism likewise effects affects the acoustics of crying. Autism genes mutate in same regions A study by the University of California, San Diego found that genes associated with autism tend to mutate at rates up to ten times higher than typical genes, and that those 60-something autism-related mutations tended to cluster in certain regions of the genome—prompting plans to genetically sequencing those regions in larger numbers of patients, possibly enabling researchers to identify more of autism’s genetic risk factors. Prenatal inflammation linked to risk Modern science, of course, doesn’t yet know what precisely causes autism. However, a significant clue was uncovered after a review of a large collection of data on Finnish mothers, finding that those whose levels of C-reactive protein (CRP), a wellknown indicator of prenatal inflammation, were higher had higher risks of having children with autism. For mothers with CRP levels in the top 20th percentile, that risk was increased by 43 percent, and by 80 percent for those whose CRP levels were in the top 10th percentile. The findings appear to add to evidence that an overactive immune response can alter central nervous system development. However, one researcher pointed out that the study does not mean that the vast majority of mothers with increased CRP levels will have children with autism. After brain implant, boy with autism speaks for first time A 13-year-old German boy with autism severe enough that he’d repeatedly wake up at night screaming, as well as regularly engage in serious self-injurious behavior, responded remarkably to a deep brain stimulation implant. The device, which uses electrodes to stimulate the amygdala, the part of the brain affecting memory and emotion, alleviated the boy’s behaviors and allowed the otherwise nonverbal individual to begin speaking his first words within six months. Additionally, the implant apparently reduced the frequency and severity of his adverse behaviors, and prompted the boy to begin enjoying car rides and even try new foods. Further study is needed to understand exactly how the implant affects autism, researchers said. Can autism fade over time? Yes, you read that right. But now, according to a new study recently published in the Journal of Child Psychology, there are at least hints that children diagnosed with autism could grow out of the disorder. University of Connecticut researchers analyzed 34 children who had been diagnosed with autism spectrum disorder early on, but who no longer met the criteria for the disorder and lost all its symptoms. Researchers used cognitive and observational tests to compare these 34 children with 34 classmates who were not autistic. The result? The two groups of kids were nearly indistinguishable, and those who were at one point diagnosed with autism showed no signs of issues with language, face recognition, communication, or social interaction. What’s more, the autistic children’s original diagnoses were indeed accurately reported, researchers found, leading them to believe that these children may have grown out of their disorders, or perhaps were compensating for their autism-related struggles. Still, the research is not conclusive, and there are many theories for the children's outcomes. Most spectrum kids overcome language delays: study In related news, a study of 500 children with autism, published in the April edition of Pediatrics, found that 70 percent of them who were not stringing words together into even the simplest of phrases by age four went on to do so by age eight, and in some cases, even achieved fluent speech. However, that highly positive number may be due to the fact that the study covered 500 children on the autism disorder spectrum—which includes high-functioning forms of the condition like Asperger’s syndrome—and not strictly children with full-blown autism, which frequently renders children non-verbal. Study: Potential drug shows no benefits A much-heralded new autism drug failed to deliver substantial benefits in a mid-stage trial, a critical study now shows. The study of a drug called arbaclofen, presented at the recent International Meeting for Autism Research in Spain, showed that the drug failed to improve symptoms of social withdrawal. The study involved 12 months of observation of 150 individuals aged five to 21, most with classic autistic disorder. The drug, created by Seaside Therapeutics, is the first of a handful of treatments in development expressly designed to correct genetically-induced signaling problems in the brain that result in autism—specifically, the social awkwardness and withdrawal associated with autism. Arbaclofen works to control an overabundance of signaling or “noise” at brain synapses by reducing the amount of the neurotransmitter glutamate that is available in the brain. Despite the disappointing results, “We believe our drug works at a molecular level that corrects signaling pathway abnormalities, circuit abnormalities and even anatomical abnormalities,” a top Seaside executive told Reuters. Autism lesser, different in girls At the recent International Society for Autism Research conference in Spain, one underlying theme was the fact that there are over three times more boys with autism than there are girls. Put otherwise, about three out of every four cases of autism are males. Why girls seem to have a natural-born resistance to autism is one of research’s biggest unsolved mysteries. At the conference, however, studies were presented showing other differences between boys and girls with autism, including different learning and socialization styles. Leader calls for autism community unity The autism community is divided into four camps—and until they start working with each other, no real cure progress will occur. So recently opined Dr. Thomas Insel, Director of the National Institute of Mental Health (NIMH) and chair of the Interagency Autism Coordinating Committee. According to Dr. Insel, the four ideological autism groups are: Those who see it as an illness, those who see it as an identity, those who see it as some injury result and, finally, scientists who see it as an opportunity to understand more about the brain. “These four kingdoms may not capture the entire universe of the autism spectrum, but they describe largely non-overlapping perspectives that now divide the world of autism,” Insel wrote. “As long as each kingdom stays behind its own walls, there is little hope for progress overall. Fifty years from now we don’t want to look back at this period and wonder why we stayed so long behind these kingdoms’ respective bastions, empowering conflict rather than cooperation.” Friendly robots help kids tackle ASDs A study of 19 children with autism spectrum disorders found that kids tended to do better when their visit with a therapist included a two-foot-tall, talking and kid-friendly humanoid robot “co-therapist.” On average, they made bigger gains in social skills such as asking “appropriate” questions, answering questions and making conversational comments. Experts have become interested in using technology along with standard ASD therapies because it may help bridge some of the communication issues kids have. While human communication is complex and unpredictable, with body language, facial expressions and other subtle cues coming into the mix, a robot or a computer game can be programmed to be simple and predictable—which may help kids with ASDs better process the information they are being given. Lyme disease-autism link debunked A new study failed to find any evidence to back up a suggested association between Lyme disease and autism spectrum disorders. Although a prevalence of Lyme disease as high as 20 percent (or even higher) has been reported in children with autism, the new research found no cases of Lyme disease in children when testing recommended by the U.S. Centers for Disease Control and Prevention was done. E10 Hamaspik Gazette | April/May ‘13
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