Thursday, February 28, 2013

State roundup: Health care industry calls drug testing bill in N.H. 'vague'


A selection of health policy stories from New Hampshire, Oregon, Kansas and California.


The Associated Press: Health Industry: NH Drug Testing Bill Too Vague

Representatives from the health care industry said Tuesday they have a vested interest in stopping employees from stealing controlled substances but a bill being considered by New Hampshire lawmakers to drug test their workers is too vague. The proposal is part of the legislative response to a recent scandal at Exeter Hospital, where an employee allegedly stole drugs and replaced them with Hepatitis C infected syringes later used on patients (True, 2/26).


Lund Report: Ore. House Bill 2522 Spells Out CCO Role For Chiropractors

The organization representing chiropractors is pushing a bill that would require coordinated care organizations to consider them equal to medical doctors, but quickly ran into opposition. … HB 2522 is opposed by CCOs, and the organization representing osteopathic physicians. "A bill of this nature undermines the original CCO legislation," said Ruth Bauman, chairwoman of the board of Willamette Valley Community Health, the CCO serving Medicaid clients in the Salem area. ... Legislation passed in 2012 created coordinated care organizations to integrate physical, mental and dental care for people on the Oregon Health Plan. The organizations are set up at the local level through collaboration among doctors, hospitals, mental health agencies, county commissioners, patient advocates and other health care professionals (Gray, 2/26).


Kansas Health Institute: Kansas Prescription Drug Monitoring Program Gets Boost

Kansas is one of at least two states set to receive free software needed to run its prescription drug monitoring program as part of a pilot project by the National Association of Boards of Pharmacy. According to state officials, that will translate to annual savings of about $120,000 in license and connectivity fees currently paid to run the Kansas Tracking and Reporting of Controlled Substances system (K-TRACS), which doctors and pharmacists use to check on possible prescription drug abuse by their patients (Cauthon, 2/26).



FSMB announces recipients of 2013 medical awards


The Federation of State Medical Boards (FSMB) announced the recipients of its 2013 awards recognizing outstanding service and leadership in the field of medical regulation. The awards will be presented at the FSMB's Annual Meeting in Boston in April. This year's recipients include:


Distinguished Service Award

The Distinguished Service Award recognizes individuals who have demonstrated outstanding service and leadership to the FSMB and the field of medical licensure and discipline. The 2013 award is presented to Martin Crane, MD, and Scott M. Fishman, MD.


Dr. Crane exercised key leadership roles in strategic planning, governance and fiduciary oversight as a member of the FSMB's Board of Directors from 2004-2011. As Chair of the organization from 2009-2010, he led initiatives to open an FSMB Advocacy Office in Washington, D.C., and raised public awareness of the important role of state medical boards in maintaining health care quality and patient safety. During his term, Dr. Crane also led efforts to enhance the FSMB's data resources, assuring the continued competence of licensed physicians through the FSMB's Maintenance of Licensure initiative, and integrating the FSMB's resources into the national system of emergency preparedness. From 2000 to 2008, Dr. Crane served on the Massachusetts Board of Registration in Medicine. In addition to leading the board as chair for five years, Dr. Crane chaired several key committees and led significant policy changes for utilizing a state medical board to improve health care quality and access to health care in the state. In 2006, the U.S. Secretary of Education appointed Dr. Crane to the National Committee on Foreign Medical Education and Accreditation, a committee he subsequently chaired.


Dr. Fishman, Chief of the Division of Pain Medicine and Professor of Anesthesia at the University of California, Davis, is well known for his longstanding scholarship and leadership in the area of pain management. He lectures throughout the United States on all aspects of pain control as well as the prevention of prescription drug abuse. Dr. Fishman is the author of the FSMB Foundation's 2007 book, "Responsible Opioid Prescribing," which was widely distributed by medical boards and quickly became a recognized authoritative resource for physicians in confronting problems associated with the evaluation and treatment of chronic pain. An expanded and revised second edition, "Responsible Opioid Prescribing: A Clinician's Guide," was released in print and e-book formats in 2012. Dr. Fishman is Past President of the American Academy of Pain Medicine, and is author of "The War on Pain" and "Listening to Pain," coauthor of "Spinal Cord Stimulation," and coeditor of "Bonica's Management of Pain and Essentials of Pain Medicine and Regional Anesthesia."


John H. Clark, MD Leadership Award

In recognition of his leadership in the field of medical licensure and discipline, the John J. Clark, MD Leadership Award is presented to W. Eugene Musser, Jr., MD.



Wednesday, February 27, 2013

Transgender Triplet Banned From 1st Grade Restroom


Coy Mathis, born a male triplet, has behaved like a girl since she was 18 months old. When her brother Max was consumed with dinosaurs, she was playing with Barbie dolls. By 4, she was telling her mother that something was wrong with her body.


Since being enrolled at Eagle Elementary School in Fountain, Colo., the 6-year-old has presented as female and wearing girls' clothing. Her classmates and teachers have used female pronouns to refer to her, and she has used the girls' bathrooms.


But since December, school officials have told her parents she can no longer use the female facilities and ordered her to use the boys' or nurse's bathroom.


"We want Coy to have the same educational opportunities as every other Colorado student," said Kathryn Mathis, Coy's mother. "Her school should not be singling her out for mistreatment just because she is transgender."


Now Jeremy and Kathryn Mathis, with the help of the Transgender Legal and Defense Education Fund (TLDEF), have filed a complaint with the Colorado Civil Rights Division on behalf of Coy, alleging that the school has violated her rights. Since Christmas vacation, Coy has been homeschooled.


"Our eye is focused on getting Coy back into school," said TLDEF's executive director Michael Silverman. "We are hopeful we can resolve this quickly for Coy's sake."


Fountain school district's press spokesman John Fogarty did not immediately return calls seeking comment.


But a letter from the school's lawyers said, "The district's decision took into account not only Coy but other students in the building, their parents, and the future impact a boy with male genitals using a girls' bathroom would have as Coy grew older."






Courtesy Transgender Legal Defense and Education Fund


Coy Mathis, a 6-year-old transgender girl... View Full Size



PHOTO: Coy Mathis, a 6-year-old transgender girl from Colorado, has been banned from using the girls? bathroom at her elementary school.


While other students and teachers do not notice that Coy has male genitals, the school said it feared as the child developed parents and students would become "uncomfortable."


"...It would be far more psychologically damaging and disruptive for the issue to arise at an age when students deal with social issues," the letter said.


Across the nation, schools are paying more attention to transgender issues, but there is little uniformity. Some Colorado schools, including Boulder Valley Schools, have detailed policies, according to a report on Coy's case in the Denver Post.


The Colorado Anti-Discrimination Act prohibits discrimination against transgender students in public schools.


A report by the National Center for Transgender Equality and the National Gay and Lesbian Task Force paints a bleak picture of life as a transgender person in the United States. The 2011 survey, "Injustice at Every Turn," found that discrimination is pervasive in "nearly every system and institution."


Transgender youth, in particular, are at disproportionate risk for depression, suicide, substance abuse, HIV and sexually transmitted diseases, according to the Family Acceptance Project at San Francisco State University.


Coy's parents worry that the school's policy is setting their child up for stigma and bullying.


"We have five children and we love them all very much," said Kathryn Mathis. "We want Coy to return to school to be with her teachers, her friends, and her siblings, but we are afraid to send her back until we know that the school is going to treat her fairly. She is still just 6 years old, and we do not want one of our daughter's earliest experiences to be our community telling her she's not good enough."


The Mathis' have a set of triplets and two other children, Dakota, 8, and Auri, 2. The father, Jeremy Mathis, 31, is a former Marine who was honorably discharged with injuries. Kathryn Mathis, 27, is a certified nurse assistant and takes care of Coy's triplet, Lily who has been severely disabled since a viral infection after birth. She must be fed through an IV and is quadriplegic.



Monday, February 18, 2013

'Feminine Mystique': 50 Years Later, Dated But Not Irrelevant


In 1963, young girls could aspire to nothing more than to be married and to have children. In school, they were not allowed to be crossing guards, play competitive sports or even raise and lower the flag, because it was considered too dangerous. But that would soon change.


Fifty year ago this week, Betty Friedan published "The Feminine Mystique," an angry manifesto that shook the American homemaker's world and launched the second wave of feminism.


Then, women represented only 35 percent of the college graduates -- 60 percent dropped out, according to Stephanie Coontz, who examined the changing status of women from the suffragist movement to the 1960s in her 2010 book, "A Strange Stirring."


Even a decade later in the 1970s, women with a college degree earned less than a man with a high school degree.


"A noted psychiatrist at the time [Helene Deustche] said a normal woman renounces all individual aspirations not out of coercion, but because she understands her needs are best met by the achievements of her husband," said Coontz.


Today the book baffles a generation of young women who played football and soccer under Title IX and whose numbers have now surpassed their male peers in law and medical degrees.


"Women still earn less than men do in every occupational category, but gender no longer trumps education," said Coontz, a professor of family studies at The Evergreen State College in Washington.


Unlike the housewives of Friedan's day, modern women enjoy the benefits of sexual revolution that were forged by their mothers in the 1970s. But they are mixed, as ever, about what it means to be a feminist.


Despite quantum gains in nearly every aspect of their lives, many say inequities still exist, particularly when it comes to attitudes toward sex. Others say Friedan's book -- though few have read it -- is dated and "irrelevant."


"I believe that we are equal and entitled to everything men are entitled," said Jenna Helmer, 23, a recent college graduate who works as a classroom aide in New Jersey. "My generation has grown up where it's kind of been the norm.


"When I was growing up, our books at school told us women could be doctors and women could be police officers, too," she said. "That's a message we all can achieve things -- black, white, men, women, the disabled and not disabled."


But she said young women still struggle with the double standard: "If a man sleeps with a whole bunch of women, he gets patted on the back -- and oh wow, he's a ladies' man," Helmer said. "If a woman does that, she's written off as a slut and is considered easy."






Courtesy of Caitlin Terborg, Jenna Helmer and Julia Levine


(L-R) Caitlin Terborg, Jenna Helmer and Julia... View Full Size



PHOTO: (L-R) Caitlin Terborg, Jenna Helmer and Julia Levine are modern women who have Betty Friedan's "Feminine Mystique" to thank for their career aspirations.





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Friedan's book -- an attack on societal norms of "sexual passivity, male domination and nurturing maternal love" -- sold more than 3 million copies worldwide.


A middle-class housewife who lost her job as a reporter after she had a second baby, Friedan later became the founding president of the National Organization for Women and fought for abortion rights.


In a 2000 interview with the New York Times, the then 79-year-old Friedan said, "When I was a child, adults never asked girls what they wanted to be when they grew up. With girls they would say, 'You're such a pretty little girl -- you'll grow up, get married and have children just like your mommy.' Well, I sure as hell didn't want to be a mommy like my mommy.''


She died in 2006, but not before writing a memoir, ''Life So Far,'' that recounted a turbulent history, including some spousal abuse during her 22-year marriage.


The 400-page "Feminine Mystique" was "in some ways the first self-help book for women," according to Coontz. "It's dated, but that is its very relevance."


"For most women today, 1963 could be 1396, because they do not grow up in a world where employment ads are sex-segregated and head and master laws gave husbands the final say in the home and where rape was defined as forcible intercourse with someone other than a man's wife," Coontz said. "It's really important for women who get discouraged to understand how far we've come."


Still, women continue to make less in the workplace. And the United States is one of the few countries in the world that does not require paid maternity leave (or paternity leave, as in Sweden). No woman has yet become president.


"Now that we see access to the world of work, we have to make sure to stop assuming every employee has a wife at home," said Coontz, who writes about the topic, "Why Gender Equality Stalled" in this week's Sunday New York Times.


The sexual equality has only been half won, as well. Women are consumed by the "hottie mystique," a term she uses to describe the pressure they feel to elevate their sexuality above all other aspects of their identity.


HBO's popular television show, "Girls" by Lena Dunham, has been a touchstone for this generation, the millennials. But the 20-something characters, though sexually free, are at once aggressive and emotionally needy.


"It's fairly realistic," said Caitlin Terborg, a 27-year-old graduate student in communications from Denver. "They don't have jobs and they want to make something of themselves.


"Even how sex is portrayed -- there are girls who are virgins at this age and girls who are definitely putting themselves in situations where they can manipulate and where they can be taken advantage of," she said. "But they are having sex because they want to."


Sex continues to be about control -- control that goes both ways, said Terborg.


"Guys use it to control girls, and girls use it to control their boyfriends to get what they want or to keep them around," she said.


Terborg knows men still have an advantage in the work place, one of the reasons she is getting an advanced degree. She also worries about violence against women and the dismantling of their reproductive rights.


"We almost lost the right to choose free access to birth control -- that was pretty scary," said Terborg of recent debates over whether insurance companies should be required to pay for birth control under the Affordable Care Act.


"There is a spiral of silence -- we don't speak out because we are afraid of the responsibility or not fitting in," she said. "Sadly, I think there is a need for a writer [like Friedan] or a voice. Our generation is spoiled. ... Maybe there is a sense of entitlement."



Thursday, February 14, 2013

Older Fathers Can Be Better Dads the 2nd Time Around


At 60, Arthur Schwartz sees many of his college friends talking about retirement and grandchildren, but he is energetically immersed in the busy lives of his two young daughters, aged 9 and 7.


"I hang out at school with parents in their 30s," he said. "It changes your perspective on life.


This is round two for Schwartz, a New York City lawyer who has adult children from a first marriage and two more with a much younger wife.


However, becoming a father in his 50s, he now enjoys the patience and perspective of maturity.


"It was different, for sure," Schwartz said about raising his first family, a 25-year-old son and a 22-year-old daughter, when he was in his 30s.


"I didn't spend enough time with the older ones," he said. "I worked until 8 or 9 at night. ... I worked one day a weekend and sometimes two."


It's also take two for comic actor Alec Baldwin. Just this week, at 54, the same age as Schwartz when he started a family anew, Baldwin announced to the TV show "Extra" that his 28-year-old wife, Hilaria Baldwin, is expecting their first child.


Schwartz said his reaction to Baldwin's news was, "Good for him, but he better slow down and make time for [the baby] -- and don't run for [New York City] mayor."


Baldwin has a 17-year-old daughter, Ireland, with his first wife, Kim Basinger.


He once had a strained relationship with his daughter. In a 2007 voicemail, he famously called Ireland "a rude, thoughtless, little pig."






Sonia Moskowitz/Getty Images


Hilaria Thomas, Alec Baldwin, and Ireland... View Full Size



PHOTO: Hilaria Thomas, Alec Baldwin, and Ireland Baldwin attend the Group For The East End's 40th Anniversary Benefit And Auction at Wolffer Estate Vineyard, June 23, 2012, Sagaponack, N.Y.





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"Alec Baldwin is getting second chance in life to do it right this time," said Fran Walfish, a Beverly Hills psychotherapist and author of "The Self-Aware Parent."


Other celebrities, like 68-year-old Michael Douglas, have publicly said they made better fathers later in life. His 34-year-old son, Cameron, from a first marriage, has struggled with drug abuse. But today, Douglas reportedly enjoys a close relationship with his children with Catherine Zeta-Jones -- Dylan, 12, and Carys, 9.


Men with younger children say it keeps them "feeling young, alive, and mortal," said Walfish. "It is a distorted belief that, unconsciously, is an antidote to fear of dying. Having a younger woman and kids keeps the lid on their anxiety about their demise."


But on the positive side, older men in second marriages often make better parents.


"Many are more available, having developed successful careers, and also wish to make up for being too unavailable the first time around," said Michael J. Diamond, a professor in psychiatry at UCLA and the author of "My Father Before Me."


New York City lawyer Arthur Schwartz with his children from a second marriage, Jordyn 9, and Devin 7, at Disneyland.


Schwartz said he looks back and sees himself in the Harry Chapin song, "Cat's in the Cradle," with its searing lyrics about an absent father: "But there were planes to catch and bills to pay. He learned to walk while I was away."


"I wonder if I did the same thing and it echoed in my head," said Schwartz.


In a truth-telling moment, when his second wife gave birth to their youngest, his then-14-year-old daughter screamed at Schwartz: "You had so little time for me when I was a kid, and Jordyn [her half-sister] came along and there was less time, and now there's no time for me."


Today, the older children love the younger ones, but it had its "rocky moments," said Schwartz.


The science on older fathers is mixed. A 2012 study published in Nature magazine, found that advanced age can cause mutations in sperm, increasing chances for a child to develop autism, schizophrenia and other diseases.



New study reveals racial disparities in chronic pain management


Opioids are frequently prescribed for pain management in noncancer patients, but recommended clinical guidelines for monitoring effectiveness and signs of drug abuse are often not implemented. Alongside well-documented racial disparities in prescribing opioid medications for pain, researchers report racial differences in the use of recommended opioid monitoring and follow-up treatment practices. The study is published in the current issue of PAIN®.


"In our study, we examined whether racial disparities exist in a more comprehensive set of opioid monitoring and treatment practices, including the use of an opioid agreement, the assessment of pain during follow-up visits, the use of urine drug screenings, and referrals to pain and substance abuse specialty clinics," says lead investigator Leslie R.M. Hausmann, PhD, Core Investigator, Center for Health Equity Research and Promotion, VA Pittsburgh Healthcare System, and Assistant Professor of Medicine, University of Pittsburgh.


A retrospective cohort study examined racial differences in the documentation of pain and the involvement of specialists in the care of patients who are prescribed opioids for chronic noncancer pain. Investigators pulled data from electronic health records for 1646 white and 253 black patients who filled opioid prescriptions for noncancer pain for more than 90 days at the Veterans Affairs Pittsburgh Healthcare System pharmacy from October 2007 to September 2009. Additional data about opioid monitoring and follow-up treatment practices were pulled for a 12-month follow-up period, to complete a comprehensive profile.


Of these patients, nearly 94% were male, 22% were aged 65 or older, and 45% were married or lived with a partner. Patients were most often being treated for back pain or joint pain. About half of the study sample had at least one comorbid physical or mental health diagnosis, and one-third had a history of substance abuse.


Compared with white patients, black patients were significantly younger, less likely to be married, and less likely to have back pain. They had more physical comorbid conditions, more primary care appointments, and higher maximum pain scores. They were less likely to have a mental health diagnosis. Both study groups were equally likely to have a history of substance abuse. However, statistical analysis revealed significant racial differences in recommended opioid monitoring and follow-up treatment practices. Specifically, pain levels were less frequently documented for black patients than for white patients during medical visits. Among patients who had at least one urine drug test, black patients were also subjected to more tests, especially if they were on higher doses of opioids. Finally, black patients were less likely than white patients to be referred to a pain specialist and more likely to be referred for substance abuse assessment after being prescribed opioids.


"The emerging picture is that black patients who are able to overcome the barriers to securing a prescription for opioid medications may still be subjected to differential monitoring and follow-up treatment practices that could impact the effectiveness of their pain management," concludes Dr. Hausmann. "Addressing disparities in opioid monitoring practices may be a previously neglected route to reducing racial disparities in pain management."



Wednesday, February 13, 2013

Military Still Lags in Assisting Victims of Sexual Assault


For Jenny McClendon, joining the Navy meant "being there for each other, struggling, pulling together, being a team."


Growing up with a father in the Marine Corps, she always expected to serve her country in some capacity, she said, but it was the Navy that really captivated her.


"The Navy seemed exciting," McClendon told ABCNews.com. "The idea of going out on the high seas, it was exhilarating."


But McClendon's ideals about serving her country were upended when she attended training camp in San Diego in 1997. Her class officer started to verbally harass her and other female cadets, she said, asking them "if their vaginas hurt," and calling McClendon "bitch" and "feminazi."


When McClendon reported the harassment to a higher-ranking officer, telling him, "This is not the Navy I signed up to serve in, this is not the America I signed up to serve," she said she was ostracized by her fellow service members.


Out at sea on a Navy ship, where McClendon said "you're pretty much trapped," she recalled how a petty officer 2nd class -- one rank above her -- would order others out of the room so that he could grope her. The groping escalated to rape.


Fearing ostracism or reprisals if she complained, McClendon started wearing multiple layers of clothing to evade further attacks. When she finally did report the rape to her senior chief, she said he told her, "To this command, you are a known feminist, lesbian and Democrat. You're going to prove that you're just trying to get this guy into trouble."






Protect Our Defenders


After Jenny reported a military superior's... View Full Size



PHOTO: After Jenny reported a military superior's repeated sexual assaults, her attacker briefly lost rank, which was restored by the end of deployment.





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McClendon's ordeal happened 16 years ago, but it's just one in a list of military sexual-abuse scandals that goes back to the Navy's 1991 Tailhook Convention, where 100 officers sexually assaulted more than 80 women. Five years later at the Army's Aberdeen Proving Ground, a dozen Army officers were charged with sexually assaulting female trainees. More recently, at Lackland Air Force Base in Texas, 32 basic training instructors are under investigation for allegedly attacking at least 59 victims beginning in 2008.


According to the Department of Defense's Sexual Assault Prevention and Response Office, 2,420 servicewomen reported they'd been victims of sexual assault in 2011.


A recent report from the U.S. Government Accountability Office, undertaken in response to women taking new positions on the frontlines of combat, found that although the Defense Department had "taken steps" to meet the health needs of deployed servicewomen, it still fell short when it came to providing medical and mental health services to victims of sexual assault.


The GAO report found, for example, that first responders, including chaplains, victim advocates and health personnel, did not always have a clear understanding of where to take sexual assault victims for a forensic examination, which has the potential of becoming doubly problematic, as the current guidelines state that forensic evidence is only to be collected up to 72 hours after the attack.


The report also found that some health care providers became confused by medical provisions that seemed to conflict with their command obligations, especially when it came to keeping a victim's identity confidential. As a result of this continued confusion, military women were not comfortable reporting sexual attacks.


But the ongoing Lackland investigation, and the release of the documentary "The Invisible War," which examines sexual assault in the U.S. military and is up for an Academy Award, have driven policymakers to act.



Tuesday, February 12, 2013

If Mom Liked You Best, Everyone Loses


Parents may not admit it, but picking favorites among their children is a fairly common practice. Now, new research reveals that this pattern -- known as differential parenting -- is not only detrimental to the child who receives the negative feedback, but also the entire family.


Additionally, this new study shows that the more drastic the parenting styles between children, the worse the outcome of the mental health of all the children.


"This was really surprising," said Jenny Jenkins, professor in the department of Applied Psychology and Human Development at the University of Toronto and lead author of the study. "We expected differential parenting to operate stronger within the parent-child dynamic. However, differential parenting had a stronger effect on the entire family."


"Differential parenting"-- giving mostly positive feedback to one child while mostly negative feedback to another -- has long been linked to negative effects for the targeted child. Until this study published Tuesday in the journal Child Development, however, its broader effects on the family as a whole had not been studied in detail. In her four-year longitudinal study, Jenkins observed the behavior of 400 Canadian families through direct in-home observation and self reports.


She and her colleagues found that children in families affected by differential parenting showed higher incidence of problems with attention and social relationships.






Getty Images


Parents may not admit it, but picking... View Full Size



PHOTO: Parents may not admit it, but picking favorites among their children is a fairly common practice, and new study shows it can be detrimental to the entire family.





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"Sibling divisiveness is a known result of differential parenting, with lasting effects into adolescence and adulthood," she said.


In addition, researchers found that differential parenting was linked to other factors -- some of which were present in the home environment, and others that the parents had experienced in the past.


Dr. Rahil Briggs, assistant professor of Pediatrics at the Albert Einstein College of Medicine in the Bronx, N.Y., said these factors stacked the deck against some parents.


"While all parents know that it's best to avoid comparing siblings to each other, and to strive for equity in terms of attention, optimal parenting of this sort is incredibly difficult when faced with multiple risk factors, such as poverty, mental illness, and a history of adverse childhood experiences," said Briggs, who was not involved with the study.


In short, mothers who were under emotional and financial stress had a harder time being fair to all of their children when parenting.


"While none of this surprises me, it further supports the claim that we must support families, especially those families with young children, to help ameliorate some of these impacts of risk," said Briggs, who is also director of Montefiore Medical Center's Healthy Steps, a program aimed at getting parents and children off to a healthy start with the help of specialists in child development and behavior. "The experiences of young children create a foundation upon which future development and behavior is built, and it's really imperative that this foundation be strong."


While the study only shows an association between differential parenting and mental health outcomes for children in families -- not that one of these things necessarily causes the other -- it gives us very valuable information into family dynamics and the importance of parenting with fairness.


"Parents don't set out to be horrible to one child versus another," Jenkins said. "There are many environmental factors that lead parents to these actions.


"As parents, we have to be aware of these factors, and not let them affect our parenting."



Friday, February 8, 2013

Hypertrophic Cardiomyopathy Kills 7 in One Family


So far, Lisa Salberg has lost seven family members to an insidious heart disease, a medical mystery that took four generations of tragedy to unravel.


Her great-great uncle, an Irish immigrant, mysteriously dropped dead at the age of 19 in a New Jersey iron mine a century ago. At 50, her great-grandmother died of "dropsy" -- an old-fashioned term for the accumulation of fluid associated with heart failure.


Salberg's grandfather had a heart murmur and died at 43. Her father missed a date with her mother because he had to administer CPR to his dying father. Salberg's aunt died at 36 of "the flu." Another aunt died of a stroke at 52. And an uncle died of heart failure at 48.


Fast forward to the mid-1970s: Salberg's sister Laurie was properly diagnosed with what looked like the cause of death of so many in her family, hypertrophic cardiomyopathy (HCM), or an enlarged heart.


Her death in 1995 hit Salberg the hardest, as she struggled to raise Laurie's children along with her own newborn daughter.


"I don't know how many there are, but we are dropping like flies," said Salberg. "The pieces came in dribs and drabs, and it took years to get the information imparted. There was no connecting the dots."


Their father was diagnosed with HCM in 1989 and died in 2008.


"It affected generations of people and it's everywhere in my family," said Salberg, 44, who got her diagnosis in 1979.


Salberg's now 17-year-old daughter, as well as Laurie's children, her niece, 28, and nephew, 30, also have HCM. Several cousins also have the disease.


Cardiomyopathy is a familial disease that primarily affects the muscle of the heart. With HCM, the normal alignment of muscle cells is disrupted, a phenomenon known as myocardial disarray. It also causes disruptions of the electrical functions of the heart and, depending on whether it obstructs the outflow of the heart from the left ventricle, can be obstructive or nonobstructive.


HCM is an autosomal dominant genetic condition, which means the mutation only needs to be passed down from one parent. Because cardiomyopathy is a spectrum of diseases, each person is affected differently.






Courtesy Lisa Salberg


Lisa Salberg with her 17-year-old daughter... View Full Size



PHOTO: Lisa Salberg with her 17-year-old daughter Becca and her father Larry Flanigan Jr., all of whom were diagnosed with HCM. Flanigan died in 2008 of the disease.





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The disease is "actually pretty common," affecting about 1 in 500 Americans, said Dr. Sripal Bangalore, assistant professor in cardiology at NYU Langone Medical Center in New York City. An estimated 600,000 Americans are living with the disease.


Celebrities With Heart Problems


"A lot of people walking around lead a normal life into their 70s and 80s with no problems," he said. "At the other spectrum, young athletes die while playing sports."


Often there are no symptoms, so the disease is diagnosed by evaluating family history. Children at risk should have an echocardiogram to see if the heart muscle is enlarged. That must be repeated every five years until adulthood and is not always conclusive. Many doctors do not recommend genetic testing because of its complexity รข€“ there are more than 1,000 genes associated with cardiomyopathy.


Treatments may include medications like statins, beta blockers and calcium channel blockers; surgery to burn away the thick part of the heart muscle; and implanted defibrillator devices.


HCM is best known as the disease that strikes young athletes in their prime. It gained attention in 1990 with the death of 23-year-old Hank Gathers, a basketball star at Loyola Marymount University in Los Angeles.


According to a 2003 review published in the New England Journal of Medicine, HCM is the leading cause of sudden death among athletes, accounting for roughly a quarter of deaths.


But it more commonly causes sudden death off the athletic field, according to Salberg, who founded the New Jersey-based Hypertrophic Cardiomyopathy Association (HCMA) to raise awareness of HCM and provide support to those with the condition. For 17 years, Salberg has connected families with leading researchers at academic hospitals and medical centers nationwide.


Healthy 6-Year-Old Suffers Sudden Cardiac Arrest


In the United States alone, approximately 250,000 people die every year from sudden cardiac arrest, according to the Centers for Disease Control and Prevention. Approximately 10 percent of SCA events occur among people less than 40 years of age.


Most die in schools, work places and at home, far from hospitals with lifesaving equipment. Salberg has spearheaded successful legislation in New Jersey to get CPR and automated external debrillators (AEDs) in the schools and supported national efforts for sudden cardiac arrest drills.


Salberg and NYU's Bangalore don't recommend universal testing of athletes, although those diagnosed with HCM should avoid vigorous activities.


"If you screen 10 to 15 million people, it's a big cost," said Bangalore. "It's not a cost-effective strategy. The number of young athletes who die is small -- less than around 100."