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.

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Tal Golesworthy: How I repaired my own heart

http://www.ted.com Tal Golesworthy is a boiler engineer — he knows piping and plumbing. When he needed surgery to repair a life-threatening problem with his aorta, he mixed his engineering skills with his doctors’ medical knowledge to design a better repair job.

TEDTalks is a daily video podcast of the best talks and performances from the TED Conference, where the world’s leading thinkers and doers give the talk of their lives in 18 minutes. Featured speakers have included Al Gore on climate change, Philippe Starck on design, Jill Bolte Taylor on observing her own stroke, Nicholas Negroponte on One Laptop per Child, Jane Goodall on chimpanzees, Bill Gates on malaria and mosquitoes, Pattie Maes on the “Sixth Sense” wearable tech, and “Lost” producer JJ Abrams on the allure of mystery. TED stands for Technology, Entertainment, Design, and TEDTalks cover these topics as well as science, business, development and the arts. Closed captions and translated subtitles in a variety of languages are now available on TED.com, at http://www.ted.com/translate

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Common blood pressure drug reduces aortic enlargement in Marfan syndrome – Update

There were no differences in the rate of aortic dissections (0 in the losartan group and 2 controls) or elective aortic surgery (10 in the losartan group and 9 in controls) and no cardiovascular deaths occurred.

marfan syndrome uk logo squareBy European Society of Cardiology, [RxPG] AMSTERDAM, The Netherlands – A 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.

In addition to lowering blood pressure, the main benefit of losartan is believed to be its interference with the biochemical process that causes aortic enlargement.

To assess this, the COMPARE study included 233 participants (47% female) with Marfan syndrome from all four academic Marfan screening centers in the Netherlands.

Subjects were a mean age of 41 years, 27% had previously undergone prophylactic aortic root replacement, and the majority (73%) were being treated with beta blockers.

A total of 117 subjects were randomized to receive no further treatment, while 116 were randomized to receive losartan 50 mg daily, doubling after 14 days if there were no side effects.

Aortic enlargement was monitored with magnetic resonance imaging (MRI) for three years of follow-up.

During the study period, if patients in either arm required prophylactic aortic root replacement the decision was left to the discretion of the attending cardiologists based on existing guidelines and anticoagulation therapy was initiated when appropriate.

The study showed that after 3 years aortic root enlargement was significantly less in the losartan group than in controls (0.77 mm vs. 1.35 mm, p=0.014), and 50% of losartan patients showed no growth of the aortic root compared to 31% of controls (p=0.022).

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