Tuesday, September 4, 2012

Spina Bifida NZ Disappointed by Folate Decision

Spina Bifida NZ Disappointed by Folate Decision

Spina Bifida New ZealandFriday 31 August 2012, 11:08AM Media release from Spina Bifida New Zealand

The Minister of Food Safety, Kate Wilkinson today announced her decision not to introduce mandatory folate fortification into New Zealand, despite this being international best practice in 75 other developed and developing countries.

Submissions to the Ministry of Primary Industries that favoured mandatory fortification were received from professional medical associations, doctors and families affected by a neural tube defect (NTD) pregnancy. Submissions favouring voluntary fortification were received from individual consumers, industry associations and individual bakery firms.

In the Ministers briefing paper to Cabinet1 New Zealand had an average rate for Neural Tube Defect (NTD) affected pregnancies of 12.9 per 10,000 births from 2005-2009. This equates to 80 NTD affected pregnancies per year based on 19 live births, 14 stillbirths and an estimated 47 pregnancy terminations.


The decision taken today must mean that the Minister and the New Zealand Association of Bakers place no value on the lives of 61 babies lost and the impact that this has on their immediate and extended families. If two buses crashed and 61 children's lives were tragically cut short, as a country we would honour their lives with a national day of mourning. The real tragedy is that these little lives are being lost quietly, out of public (but not private) view, and are seen as disposable.

As a society, we are unable to demean disabled people by parading physically deformed babies before the public or film the pain the parents feel as they watch their baby being terminated to demonstrate the trauma and conflict that a NTD diagnosis causes. It is the unborn babies and those yet to be conceived who will pay the price for this decision when their lives are cut short and terminated because they are diagnosed with having a Neural Tube Defect (including Spina Bifida).

The New Zealand Government needs to acknowledge that the termination of an NTD affected pregnancy following prenatal diagnosis is not part of their preventative strategy. Folate plays a key role in preventing NTDs for women planning a pregnancy, but in New Zealand 50% of pregnancies are unplanned. Folate also plays a key role in other key areas of health, improving cognitive function in the elderly, development of speech language and prevention of cleft lip and palate and is required for cell division and repair. Folate fortification has health benefits for all of society. These benefits not only have an impact on the health budget but on the lives of everyday New Zealanders.

An eminent Canadian doctor, Dr AGW Hunter said that "we need to feel a sense of responsibility and failure every time a baby is aborted because of an NTD, or a child is born with this preventable disability". The decision announced today contravenes the United Nations Convention on the Rights of the Child (UNCRC Discussion 6 October 1997). The NZ Government has a legal responsibility to protect children from disability before birth and all circumstances which might result in disability at the time of birth.

SBNZ only hopes that the Minister and the New Zealand Association of Bakers will now bear that responsibility on their shoulders and that parents of babies diagnosed with Spina Bifida are given access to the MOH High Cost Treatment Pool to access prenatal surgery internationally.

Why pre-natal surgery makes sense, for some, for spina bifida

Why pre-natal surgery makes sense, for some, for spina bifida

Posted: Aug 24, 2012, 9:17 am
By Jeff Hansel
The Post-Bulletin, Rochester MN

Mayo Clinic surgeons in May performed surgery on a fetus before birth to decrease almost certain complications of spina bifida.

The baby was born by cesarean section in early August and is doing well, though she might face struggles.

In "myelomeningocele,"(the most severe form of spina bifida, the spinal cord is open to the amniotic fluid during pregnancy, and complications build as the pregnancy progresses. Almost all infants with this form of spina bifida have complications, such as the brain essentially sagging toward the spinal column.

Standard treatment has been surgery after birth, and babies often need a permanent shunt to drain fluid the brain isn't able to dispose of on its own.

Many believed surgery before birth would help because it would allow babies' neural systems more time to develop naturally. But no one knew for sure if this would keep more babies alive or, because of a higher risk of premature birth and other factors, would be harmful.

So researchers convinced every prenatal surgical center in the U.S. to cease early-intervention surgeries unless they were part of a national research study, says a March article in the New England Journal of Medicine.

From February 2003 to December 2010, women were offered the surgery at one of only three locations — Children's Hospital of Philadelphia, Vanderbilt University and the University of California at San Francisco. The data was analyzed at an independent center.

"Children in the prenatal-surgery group were more likely than those in the postnatal-surgery group to be able to walk without orthotic devices," the New England Journal article reported. Also, prenatal surgery before 26 weeks of gestation "decreased the risk of death or need for shunting by the age of 12 months and also improved scores on a composite measure of mental and motor function."

Results were so good that the trial, randomly assigning women to prenatal surgery or post-natal surgery, was stopped early after 183 of a planned 200 women pregnant with babies diagnosed with spina bifida were recruited for the study.

That doesn't mean spina bifida was cured, nor were all associated problems fixed. Two babies in each group died. The percentage of deaths overall was dramatically decreased in the prenatal group, but it remained high.

Because of the potential for fetal death, severe physical impairments, lifelong complications and mental deficits, parents of babies with severe spina bifida typically are asked whether they want to terminate the pregnancy.

Most of those who survive surgery after birth can't get a job without the presence of a vocational assistant, said Mayo Clinic pediatric neurosurgeon Dr. Nick Wetjen.

The hope with the surgery is to improve quality of life and decrease complications. Parents need to be fully informed of the possible risks and benefits of the procedures.

"There are some people that will be helped by this, and there are some people that we will end up harming, too, because of the nature of the procedure," said Mayo maternal fetal medicine specialist Dr. Norman Davies.

Health reporter Jeff Hansel writes the Pulse on Health column every Monday. Follow him on Twitter @JeffHansel.

United Spinal Presents Free Webinars on Healthy Living for People with Disabilities & their Caregivers

NEW YORK, Aug. 29, 2012 /PRNewswire-USNewswire/ — United Spinal Association’s membership division, National Spinal Cord Injury Association (NSCIA), will host two free webinars this September for people living with disabilities and their caregivers that will focus on ways to discover a healthy & active lifestyle and how to overcome the challenges of chronic health issues such as spinal cord injury (SCI), MS, polio, ALS or spina bifida.
(Logo: http://photos.prnewswire.com/prnh/20110413/MM82757LOGO )

“For people living with disabilities and their caregivers, the challenges of maintaining a healthy and active lifestyle can be overwhelming at times. But with the right strategy and outlook, it’s within everyone’s reach. These webinars will build a foundation for many to discover better health, as well as happiness and success,” said Marlene Perkins, VP of Corporate and Community Relations at United Spinal.

The first webinar Discovering a Healthy &Active LifestyleSept. 5th at 3 p.m. to 4 p.m. EDT, will offer helpful strategies to bring peace and balance to daily living. The webinar will explore ways to:
  • Extend empathy to yourself as easily as you extend it to others.
  • Cultivate a deep, loving and reverent relationship with oneself.
  • Quiet self-doubt and tap into one’s intrinsic wisdom.
  • Explore fears, blocks and behaviors that sabotage success.
Speaker: Erena DiGonis, LMSW, CHC; Licensed Psychotherapist and Certified Health Coach
The second webinar Staying Healthy Together! Tips for Caregivers & Care RecipientsSept. 19th at 3 p.m. to 4 p.m. EDT, will prepare people living with disabilities and their loved ones to overcome the challenges of chronic health issues such as spinal cord injury (SCI), MS, polio, ALS or spina bifida. It will also offer strategies to better communicate with healthcare professionals, become a strong advocate in healthcare situations and prevent medication/medical mishaps from taking place.

Speaker: Mark Gibbons, National Family Caregivers Association
This year, United Spinal has hosted webinars on a variety of disability-related topics–including healthcare, mobility, research, public policy, and veterans issues. You can access all of United Spinal’s previous webinars by visiting its online webinar archive.
About United Spinal Association

United Spinal is a national 501(c) (3) nonprofit membership organization formed in 1946 by paralyzed veterans and is dedicated to improving the quality of life for all Americans with spinal cord injuries and disorders (SCI/D), including multiple sclerosis, spina bifida, ALS and post-polio. It played a significant role in writing the Americans with Disabilities Act, and made important contributions to the Fair Housing Amendments Act and the Air Carrier Access Act. Membership is free and is open to all individuals with SCI/D. United Spinal was instrumental in getting New York City to create sidewalk curb ramps and accessible public transportation that has been used as a model for many United States cities.

Available Topic Expert(s): For information on the listed expert(s), click appropriate link.
Marlene Harmon-Perkins — http://www.profnetconnect.com/marlene_harmon-perkins
SOURCE United Spinal Association

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Water contamination victim speaks out

Water contamination victim speaks out

McMurray expects VA case to reach full resolution in near future

Spina bifida. Asperger’s syndrome. Tourette’s. Bipolar disorder. Organic brain dysfunction. These are just a few of the diseases William McMurray Jr. suffers from, ailments he says his doctors couldn’t explain for the first 20 years of his life — until they learned of water contamination aboard Camp Lejeune.

His is but one story in what many call the greatest case of contamination in U.S. history. A million Marines, sailors and their families drank, bathed, brushed their teeth, cooked, swam and washed their cars, clothes, dishes and pets in bad water at Lejeune for decades.

“I spent so long not knowing why I am the way I am,” McMurray, 29, said in telephone interviews last week from his Tyler, Texas, home. “When they finally found the conditions and why I was like this I was so ticked.”

The horrors of the contamination weren’t understood immediately. One base housing resident reported the unexplainable death of his dog. Another said goldfish always ended up floating at the top of the aquarium. More than 1,000 babies were stillborn or died in infancy aboard the base from 1947 to 1987, according to an exhaustive survey of death certificates filed at the Onslow County Register of Deeds.

The Department of the Navy recommended 50 years ago the regulation of many of the worst chemicals that found their way into Lejeune’s water supply, according to 1963’s Manual of Naval Preventive Medicine, which was just recently made public.

But throughout the 1960s and 70s, military and civilian employees poured oil into storm drains, improperly disposed of car batteries and tossed out used tires and countless other items around the base, according to the Environmental Protection Agency, which recorded an incident involving the burial of dog carcasses used in radiological testing.

By then, the wells that supplied the base’s potable water swirled with more than 70 toxic chemicals including trichloroethylene, tetrachloroethylene, benzene and vinyl chloride, according to EPA reports.

By 1980, military and civilian scientists were sounding alarms that Lejeune’s water was poisonous, but wells were not closed for another four years and only after state officials became involved, according to transcripts of Congressional hearings on the matter.

McMurray was born at the Naval Hospital on Oct. 24, 1982. His father, a hospital corpsman and Vietnam veteran, had moved his family into base housing in the year prior. By the time McMurray was born, his mother had already had one miscarriage and months spent drinking and using the polluted water in their Tarawa Terrace home.

McMurray was born in a specialized laboratory because of his multiple dysfunctions and doctors didn’t expect him to live long. Even if he did survive, they told his parents, he would never walk. McMurray proved them wrong, but not without consequence. As he grew his development stalled, and he was barely able to speak. It took years before he uttered his first words, and he spent most of his childhood in and out of hospitals undergoing tests for the myriad of conditions with which he has been diagnosed, he said.
Beginning in 1984, military officials began to point publicly to a small, off-base dry cleaner as the source of contamination without disclosing to environmental regulators that depot storage tanks at Hadnot Point aboard base had leaked around 1,500 gallons of fuel into the ground every month for years. When the contamination made headlines, the base’s commanding general assured his Marines and their families that their water was safe when chemical levels were among the highest ever seen in a public water system, according to a series of investigative reports published by newspapers in Florida, which is home to more than 12,000 veterans affected by water contamination — the most of any state except North Carolina.
Trichloroethylene was found at 1,400 parts per billion at Naval Hospital; 1,148 ppb at an elementary school; and 18,900 ppb in a water well — up to 280 times higher than what the EPA considers safe today, according to a review of hundreds of previously safe-guarded military documents made public by the Senate in July.

Lejeune was declared a Superfund site in 1989, giving the EPA authority to clean it up. For the next two decades, veterans fought for answers and help from the government with thousands dying of cancer. Military officials made it difficult for anyone, even federally-funded researchers, to obtain any pertinent information or documentation on the contamination, according to court records and archived reports.

The federal government in 2005 cleared the Marine Corps of any criminal conduct in handling the contamination. An EPA investigator later testified before Congress that he wanted to charge several Lejeune officers with obstruction of justice but had been overruled by a Justice Department counterpart.

When McMurray finally came to terms with his conditions in 2010, he took his case to Veteran’s Affairs, with whom he’s been fighting ever since. By 2011, good news for veterans and dependents like McMurray began to trickle out as the EPA officially ruled Lejeune water contaminant TCE to be a human carcinogen. The issue reached its tipping point in 2012 when lawmakers from North Carolina and Florida crossed the aisle to push through bipartisan legislation. The resulting Aug. 6 law requires Veteran’s Affairs to provide medical treatment to military members and — for the first time — dependents who spent at least a month aboard Lejeune from 1957 to 1987.

Total costs are estimated at $3.9 billion over 10 years. Civilian workers could be entitled to medical benefits under a different law, according to the U.S. Labor Department.

McMurray said his Veteran’s Affairs case is expected to reach full resolution within the next few weeks. Several lawsuits filed by other former Lejeune residents are still pending in federal court. A federal report on the number of diseases linked to the contamination is expected to be completed in 2014.