Abortion complaint at Mercy dropped – Marfan Syndrome

marfansyndromeuk1.jpgDENVER – The state health department will not pursue a complaint against Mercy Regional Medical Center for its admonishment of a doctor who recommended a patient consider an abortion.

The American Civil Liberties Union asked for an investigation last November after hospital officials admonished Dr. Michael Demos, a cardiologist, after his conversation with a patient about abortion in 2012.

Mercy is a Catholic Health Initiatives hospital, and it takes direction from church teachings against abortion. The ACLU complained that Mercy officials violated state laws that allow doctors to exercise their professional judgment.

But the Colorado Department of Public Health and Environment investigated the charge and decided not to sanction Mercy because Demos practices in a clinic attached to the hospital, not the hospital itself.

“The clinic where the event occurred is not licensed by the department and is not under its jurisdiction, therefore no deficient practice was cited,” said the letter, which was signed by Judy Hughes of the health department’s Health Facilities and Emergency Medical Services Division.

The letter was brief, just four sentences. It stated the health department had conducted an investigation under its authority to regulate hospitals.

“It’s kind of semantics, I think, or a good way of getting around dealing with the problem,” Demos said.

Demos’ clinic is in an office building attached to Mercy and owned by Centura Health, which also operates Mercy. The hospital is owned by Catholic Health Initiatives.

Randy Kuykendall, director of the state Health Facilities division, was not available to comment Thursday afternoon. A spokeswoman said no one else at the department could answer questions about the investigation Thursday.

Mark Silverstein, legal director of the ACLU of Colorado, said the state’s decision does not resolve the dispute about Mercy’s policy, which he believes violates state and federal law.

“Until Dr. Demos hears differently from the hospital, he remains in an unacceptable bind where he must choose between obeying the directive that was conveyed to him by the administrators last year and his medical and ethical obligations to his patients,” Silverstein said in an email.

However, Mercy spokesman David Bruzzese said Mercy does not prevent its doctors from discussing medical options with their patients.

“Patients and our employed physicians are free to use all information in the medical literature to make appropriate medical decisions,” Bruzzese said.

But it’s not consistent with Catholic ethical directives to recommend an abortion, he said.

In early 2012, Demos treated an unnamed pregnant woman with a family history of Marfan syndrome, a disorder of the connective tissue. Women with severe cases of the syndrome can die during childbirth. For some Marfan patients, medical guidelines recommend terminating the pregnancy.

Read More: The Durango Herald

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Research Update on Loeys-Dietz Syndrome and Marfan syndrome

Dr. Hal Dietz, Victor A. McKusick Professor of Institute of Genetic Medicine and Professor of Pediatrics and Investigator of Howard Hughes Medical Institute at The Johns Hopkins Hospital and Chair of the Loeys-Dietz Syndrome Foundation Medical Advisory Council (MAC), presents “Research Update on Loeys-Dietz Syndrome” at the 2012 LDSF Conference in Baltimore, Maryland, USA. Dr. Dietz discusses the latest on LDS mice model research findings.

Raising the profile of a rare disorder

articleCharlottetown woman goes public with her story of living with Marfan syndrome

It took the death of her father for Kacey Lamphier to learn she was ill.

Her dad Eddie was seemingly a healthy man when he died suddenly at age 41. Tests determined he had Marfan syndrome.

With the disease being a genetic disorder of the connective tissue, his family members were all tested to see if any of them had the disorder.

Kacey, at age eight, was diagnosed with the condition that can see connective tissue in the heart, lungs, eyes and skeletal and nervous systems and other tissues stretch and weaken. So too did her uncle and her cousin receive the diagnosis of Marfan syndrome following the death of Kacey’s father.

“I was like a tall, lanky kid whose heart was growing too fast,’’ recalls Kacey, who is now 26.

Read More: The Guardian

Slamdance Film Review: ‘My Blind Heart’

my-blind-heartPeter Brunner makes a visually arresting black-and-white debut with this experimental study of a man suffering from Marfan syndrome.

Dennis Harvey
Experimental narrative “My Blind Heart” follows a man suffering from the effects of Marfan syndrome — a genetic connective tissue disorder that can affect numerous body parts and functions — as he lives a semi-feral life in Vienna after the death of his mother. Visually arresting in high-contrast black-and-white, Peter Brunner’s debut feature is hardly a hot commercial prospect, but will appeal to fest and cinematheque programmers looking for challenging, accomplished new work.

Read More: Variety

Common blood pressure drug reduces aortic enlargement in Marfan syndrome

marfansyndromeuk1.jpgA common drug that is used to treat high blood pressure in the general population has been found to significantly reduce a dangerous and frequently fatal cardiac problem in patients with Marfan syndrome.

Results of the COMPARE (COzaar in Marfan PAtients Reduces aortic Enlargement) study reveal that patients treated with losartan (Cozaar) had a significantly reduced rate of aortic enlargement after 3 years compared to patients who did not receive the treatment.

“Our study is the first large, prospective randomized study to assess the effects of losartan on aortic enlargement in adults with Marfan syndrome, and confirms previous findings in a mouse model,” said lead investigator Maarten Groenink MD, PhD from the Departments of Cardiology and Radiology at Academic Medical Centre in Amsterdam, The Netherlands.

“We’re very excited to see that such a commonly used drug that is not expensive and has a familiar side-effect profile could have a significant effect on this very serious and frightening risk factor for these patients. These findings may change standard clinical management.”

Marfan syndrome, a heritable connective tissue disorder, affects 2-3 in 10,000 people. It causes progressive enlargement of the aorta, making it prone to rupture, which can be fatal in more than 50% of cases. Currently, the only effective treatment is prophylactic surgical aortic root replacement.

Read More: Yottafire

Learning to Defuse the Aorta

losartanWhen Dr. Hal Dietz arrived at Johns Hopkins University in the 1980s, he became obsessed with helping children with Marfan syndrome, a rare and often fatal disorder that can cause the aorta, the large blood vessel that carries blood from the heart, to grow and grow until it bursts.

“Nothing we were doing seemed to make a difference in their lives,” he said.

These doomed children had a distinctive look that clearly had a genetic basis. They were typically very tall and thin, with long arms, legs and fingers. They often had unusually flexible joints, flat feet and teeth that were crowded in their mouth.

“I decided to study genetics with the sole incentive to identify the gene for Marfan syndrome and ultimately to understand the mechanism,” said Dr. Dietz, now director of the William S. Smilow Center for Marfan Syndrome Research at Johns Hopkins.

That journey has led to surprising discoveries about Marfan’s causes and a soon-to-be published clinical trial of a drug that may help its sufferers.

Dr. Dietz’s work also inspired research that may lead to a blood test that detects enlarged aortas, potentially saving thousands of lives, even among those who do not have Marfan syndrome.

Read More: The New York Times

At a Catholic Hospital, a Dispute Over What a Doctor Can Do – and Say – Marfan Syndrome

marfan-syndrome-uk-logo-square150A dispute between a Colorado cardiologist and the hospital he works for has highlighted a growing area of concern among patient advocates and civil libertarians: gag rules imposed on doctors and nurses by Catholic health-care providers.

In a complaint filed Wednesday, ACLU of Colorado accused Mercy Regional Medical Center in Durango, in the remote southwest corner of the state, of illegally telling doctors and other employees that they cannot discuss abortion with patients, even if a pregnancy threatens a woman’s life. The complaint was filed with the Colorado Department of Public Health and Environment, which oversees the state’s hospitals.

“Mercy Regional’s moral objection to abortion does not exempt the hospital from complying with [state and federal] laws,” the ACLU’s Sara Rich wrote to the health department, “and the hospital cannot invoke its religious status to jeopardize the health and lives of pregnant women seeking medical care.”

In a statement, hospital spokesman David Bruzzese said the complaint was “based on inaccurate information.” He said Mercy takes “very seriously the care we provide to our patients.”

The hospital chose not to respond to specific allegations in the complaint.

The case involves Dr. Michael Demos, a cardiologist for 36 years, and a female patient with a family history of Marfan syndrome, an inherited disorder of the connective tissues that has been called “one of the most feared cardiovascular complications associated with pregnancy.”

In women with the condition, the strains on the body brought on by pregnancy can cause the aorta to rupture, almost always killing the mother. Thus the American College of Cardiology and American Heart Association recommend that if a patient’s aorta becomes enlarged beyond a certain point, her pregnancy should be terminated.

Read More: Propulica.org