‘Left out in the cold’ says MDs’ attitudes pose barrier to health care access

From the Boston Globe:

A new study by the Arc of Massachusetts finds that many disabled adults face long waits finding medical care and thus aren’t treated properly for common adult conditions.

Among other reasons, the report said that many internists avoid disabled patients because of uneasiness with them. Also, many doctors feel they are not reimbursed adequately by insurance companies for the time it takes to work with these patients. “Doctors avoid them,” said Leo Sarkissian, executive director of the Arc.

The study, “Left Out in the Cold: Health Care Experiences of Adults with Intellectual and Developmental Disabilities in Massachusetts,” recommended that the state call for added training for doctors.

(Above: Dr. Dan Palant, a pediatrician in Lexington, still treats longtime patient Shalom Lowell, who is 26 and has Down syndrome.  Boston Globe photo)

UPDATE:

See editorial The disabled need doctors — Boston Globe

From the Los Angeles Times, New York Times:

A California jury on Thursday acquitted transplant surgeon Hootan Roozrokh (left) of intentionally harming a disabled man in an effort to harvest his organs. The case had drawn widespread attention to the medical and ethical complexities of organ transplantation.

Roozrokh was accused of prescribing excessive drugs to hasten the death of Ruben Navarro, a comatose man who had a neurological disorder known as adrenoleukodystrophy as well as cerebral palsy.

Roozrokh’s lawyer said the surgeon had been trying to ease the patient’s suffering when other doctors failed to perform their duties.

University of Pennsylvania ethicist Arthur Caplan said the case had underscored flaws in the system.

“At the end of the day, we’ve got increased pressure for more organs,” he said. “There’s a growing waiting list; there are more centers competing for donors; and it’s a very lucrative procedure for hospitals. It’s against that backdrop that the story of a doctor being sent out to come back with organs unfolds.”

Roozrokh still faces a hearing before the Medical Board of California.

Earlier posts here and here.

(Photo from New York Times)

From ABC News, AP, San Luis Obispo [CA] News:

The trial began Monday for a San Francisco transplant surgeon who has been accused of ordering excessive drugs to hasten the death of a man with multiple disabilities in an effort to harvest his organs. Dr. Hootan Roozrokh, 34, faces one count of felony dependent adult abuse.

Ruben Navarro, 25, died in February 2006 at Sierra Vista Regional Medical Center in San Luis Obispo. He had a debilitating neurological disease and was in a coma after a heart attack.

… Navarro, who weighed about 80 pounds, was born with a neurological disorder known as adrenoleukodystrophy and also had cerebral palsy. He lived in a home for mentally and physically challenged adults in the year before his death.

The trial is expected to last three months.

(AP photo.)

Writing in the National Review, Gary Bauer (no relation) and Daniel Allott say abortions of pregnancies in which Down syndrome is diagnosed have become an “epidemic.”

They say action is needed to counter a “decidedly pro-abortion prejudice against babies with disabilities” within the medical establishment. The recently approved Kennedy-Brownback bill is a good start, they say, but training for medical professionals is also needed.

Gary Bauer is president of American Values, an organization dedicated to protecting “life, marriage, family, faith and freedom,” and ran unsuccessfully for the Republican presidential nomination in 1999. Daniel Allott is senior writer at American Values.

See also:

• The Trig Palin effect, by Daniel Allott in the Washington Times
• There is help and hope for people with Down syndrome, by Anne Downey in the Buffalo [NY] News

From CNN:

Nineteen-year-old Zach Wincent of St. Charles, Illinois, has a satisfying life. He was prom king in high school, now attends community college and works at Target. Zach’s life demonstrates the improved circumstances of people with Down syndrome in the United States, thanks to advances in education and medical care.

An excerpt:

Life with Down syndrome has changed dramatically in the past century. In 1929, the average life expectancy for a person with the condition was 9 years, but today, it is 58 to 60, said Nicole Schupf, associate professor of clinical epidemiology at Columbia University Medical Center.

(more…)

From Helen Henderson in the [Toronto] Star, a column about Barbara Farlow, whose three-month old daughter Annie died in a Canadian hospital three years ago. Annie had a chromosomal disorder called Trisomy 13, and died of what her parents believe might have been a treatable respiratory condition. They say a “do not resuscitate” order was issued for Annie without their informed consent.

Now Barbara Farlow is crusading for changes, calling on hospitals across North America and Europe to listen to the wishes of patients and their families. She asks whether some doctors are playing God with disabled kids, misleading parents about their children’s medical conditions and failing to provide treatments that would otherwise be given routinely if their children did not have disabilities.

… Farlow says she wants to bring more accountability and respect for life to the system. This is not about advocating for prolonging life at any cost, she emphasizes. It’s about patient-centered care in which the family is included in an informed decision-making process.

Some families may feel comfortable knowing they will be giving birth to a child with disabilities; others may not, she says. Either way, their wishes should be respected through a process that is transparent and accountable.

More information about Barbara Farlow and her family is here.

From Chicago Tribune, New York Times editorial, and New York Times

Federal officials report measles cases in the U.S. have reached their highest levels in more than a decade, and public health officials are blaming parents who choose not to vaccinate their children because of autism fears. Measles outbreaks have also soared in Britain, Switzerland, Israel, Austria, and Italy, sickening thousands and causing at least two deaths.

From January through July, 131 measles cases were reported to the U.S. Centers for Disease Control and Prevention from 15 states and the District of Columbia, and 15 people were hospitalized. Of those old enough to be eligible for vaccines, two-thirds had not been vaccinated. Autism and anti-vaccines advocates are unapologetic about the return of measles.

Physicians say they must increasingly spend time counseling parents who believe vaccines cause autism. Multiple studies have refuted the connection between vaccines and autism.

Measles is the first disease to reappear when vaccination rates decline because it is highly contagious. In the decade before the measles vaccination program began, each year nearly 4 million people in the United States were infected, 48,000 were hospitalized, 1,000 were chronically disabled and nearly 500 died.