SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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Monday, February 10, 2003

RESEARCH

* UK Government Funds MMR Study

* A Vaccine - Rett Syndrome Connection Found

AWARENESS

* Autism Stamp In the Works: Brief Commentary

EDUCATION

* Soaring Costs Force Closer Look At Special Education

PUBLIC HEALTH

* As Vaccination Rates Decline in Ireland, Cases of Measles Soar

* Vaccine 'Blocked' In Bid To Boost MMR in UK

FUNDRAISING

* Cure Autism Now Foundation and Maple Leaf Bakery Partner for the Cure

* First Walk F.A.R. Event For Maryland Will Take Place April 5

RESEARCH

UK Government Funds MMR Study

The Department of Health has confirmed it is providing top-up funding for "ongoing" research into the measles, mumps, rubella (MMR) vaccine.

Scientists at the National Institute for Biological Standards and Control (NIBCC) have been investigating Dr Andrew Wakefield's controversial claims of a link between the vaccine and Crohn's disease and autism.

The new £300,000 funding from the DoH will ensure the work can continue for the next three years.

Dr Wakefield sparked concerns over the MMR vaccine when he went public with his findings in 1998, but he began his research years earlier.

The NIBCC has been following Dr Wakefield's work on Crohn's disease and autism since 1993.

Scientists at the NIBCC are collaborating with the paediatric gastroenterology department at London's Royal Free Hospital, where Dr Wakefield worked.

Part of the new research will involve an attempt to reproduce Dr Wakefield's results suggesting a link between MMR and autism.

A Department of Health statement said: "This study is part of an ongoing programme of work.

"Since 1996 NIBSC has been attempting to replicate research findings on the measles virus, bowel disorders and autism. The methods used at NIBSC are some of the most sensitive available. They have not been able to repeat these findings.

"In February, Dr Wakefield was asked to provide his samples for analysis by other experts and he has yet to respond. This project brings together a range of experts including Dr Wakefield's collaborators from the Royal Free Hospital, who have agreed to provide some samples.

"Our position remains that based on the best available scientific evidence MMR is the most effective way to protect children against measles, mumps and rubella."

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A Vaccine - Rett Syndrome Connection Found

Rett Syndrome Phenotype Following Infantile Acute Encephalopathy.

ds=12503649&dopt=Abstract <- - address ends here.

J Child Neurol 2002 Sep;17(9):700-2 Related Articles,Links Fiumara A, Polizzi A, Mazzei R, Conforti L, Magariello A, Sorge G, Pavone L. Department of Pediatrics, University of Catania, Italy.

Rett syndrome is a progressive neurodevelopmental disorder with a well-defined clinical spectrum and course. Recently, mutations in the gene encoding X-linked methyl-CpG binding protein 2 (MECP2) have been identified as the cause of Rett syndrome. Along with the classic form, variant forms of Rett syndrome and Rett syndrome phenotypes are also recognized.

We report on a girl who, at age 2 months, developed an acute encephalopathy with destructive brain damage 12 hours after acellular pertussis vaccination. Peripheral lymphocyte subset analysis revealed the existence of T lymphocytes double positive for CD4 and CD8 markers. This pattern normalized over the following 3 months. Months later, the girl manifested a Rett syndrome phenotype. DNA screening of the MECP2 gene was unrevealing in the child and her parents. This previously unreported association emphasizes the notion that Rett syndrome phenotypes can result from different (either genetic or environmental) causes.

PMID: 12503649 [PubMed - indexed for MEDLINE]

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BRIEF COMMENTARY

Autism Stamp In the Works

Announced by U.S. Rep. Richard Baker, R-Baton Rouge, according to the local newsapaper The Advocate: "Introduction of legislation authorizing a postage stamp intended to draw attention to the disease of autism." The Louisiana cadre of Unlocking Autism claims to be behind this.

It's too early for proposed stamp artwork. The Young Albert Einstein? The fictional Mr. Spock? Or maybe they'll sneak on a portrait of Eli Lilly at the last minute?

A completely unfounded rumor has it that Sen. Frist would like to add a special 2 cents surcharge to the stamp with the funds helping to retire the struggling Pharmco industry's campaign debts and thus maintain homeland security (not to be confused with the bank Homeland Security, for those of you in Rio Linda).

Actually, a better irony would be to save the Lilly image for a re-issue of the old mercury dime. This time, instead of having some unfashionably incorrect slogan with "God" in it, this coin would read "Heads I Win, Tails You Lose."

Seriously folks, the issuance of an autism stamp would not only go far to raise autism awareness, but it would do wonders to help restore the tarnished image of congress for their clumsy insensitivity towards families with children with autism. This was in the form of hastily reveresed recent legislation absolving Eli Lilly of responsibility for their questionably toxic mercury additives to vaccines. Some content that the additive, Thimerasol, may play a role in the ever-growing autism epidemic. –LS

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EDUCATION

Soaring Costs Force Closer Look At Special Education

Rose Marie Boniface of Marlborough is one of hundreds of superintendents battling to keep the lid on special education costs as more students with severe problems enter the schools.

Throughout the country, school districts are shelling out greater percentages of their budgets on special education while other programs suffer.

For example, from fiscal years 1990 to 1999, per-pupil costs for special education students in Massachusetts increased four times the amount of regular education expenditures, 20 percent vs. 4.52 percent, adjusted for inflation. On average, most schools have about 16.6 percent special education students.

Costs will continue to rise, superintendents say, even as their districts face tighter budgets.

A study by the Massachusetts Association of School Superintendents' special education task force is receiving national attention for its cost analysis and explanations of the changing population of students.

According to the study, factors contributing to higher costs include a greater number of children who, because of advances in technology, survive medical problems in birth and infancy; children who have been moved from state institutions to public schools and private residential programs, and increased poverty and stress in families.

Boniface watches more sick and special needs children enter the preschool next to her office each year.

"You certainly can see the intensity in children's needs and see the needs changing," she said.

The study was authored by Hudson Superintendent and MASS President Sheldon Berman, Dover-Sherborn Superintendent Perry Davis, MASS Director of Technology Initiatives Ann Koufman-Frederick and Dr. David K. Urion, a clinical child neurologist and director of the Learning Disabilities Program at Children's Hospital in Boston.

While local superintendents back the study's findings, some policymakers and conservative organizations say costs have increased because schools, parents and doctors are pushing too many children into the special education category.

Marlborough, a district of 4,800 students, has tried every cost-saving measure, Boniface said, from keeping special education students in regular classrooms to hiring more specialists so the schools do not have to pay up to $30,000 per student for out-of-district placement.

"But our costs don't go down, they go up," Boniface said.

One to two new students enter into the district each month with autism, she said, and property taxes alone cannot cover that cost. "You can't dump it all on the local school district; (districts) don't have anything to draw from. It has to be shared responsibility."

Last month the state defaulted on its promise to share 50 percent of the cost of residential programs for the remainder of the fiscal year because of budget shortfalls.

A federal agency will pay for the 50 percent this year.

Educators agree that special needs students benefit from being in school, but the state does not recognize how much it really costs to educate these students.

School districts receive a "lump sum," from the state, assuming that every school has the same percentage of special education students. Labeling a student as special needs has no influence on how much money schools receive from the state.

But the funding formula is lower than what schools end up paying.

"I think Massachusetts and the state is almost criminal in its failure to provide adequate resources to pay for special education," said Mark Smith, who will retire as superintendent of the Framingham Public Schools this spring. "I've worked in (New Jersey, Pennsylvania, Connecticut and Massachusetts), and I've never worked in a state that failed to provide resources in special education" the way Massachusetts does.

Carol Daring, superintendent of the Milford Public Schools, said the unpredictability of special education needs and costs make budgeting difficult.

Many special education students are moving into the Milford district, and more are being diagnosed at an earlier age because of early intervention programs, she said. Also, out-of-district schools often raise prices in December and make the increase retroactive to September.

"So much of it is out of our control," she said.

Berman, who co-authored the study, said the state is burying its head in the sand and "ignoring a problem that is only going to get worse."

"At one time, when the pie was expanding, school districts could cover their costs with state dollars. But now, there is no aid. The crunch is even more serious."

Changing terms Maureen Sabolinski, director of Pupil and Personnel Services in Franklin, says the district has kept costs lower by integrating special education students into almost every class. Because the schools have small class sizes and tutors, fewer children are identified for special education, she said.

Sabolinski also has used federal grants to pay for teacher professional development in special education.

"We've really worked hard to build a very strong regular education program with a lot of support services," such as a full-day kindergarten and integrated preschool. If class sizes increase because of the budget crunch, though, it will mean more special education costs.

In Hudson, from fiscal years 1994 to 2004, special education costs are up 150 percent, compared with 75 percent for other budget areas. Health costs are rising dramatically as well. The vast majority of children with disabilities are preschool age, showing that the trend will continue.

Jay P. Greene, a senior fellow at the Manhattan Institute for Policy Research, argues against giving more money to schools for special education students. The students need smaller group instruction, "which is something we're already moving to in education."

Greene believes there has not been an increase in the number or severity of students with disabilities.

For example, the reported growth in autism is probably because the description of the disease now includes Aspberger Syndrome, he said.

"Thirty years ago those kids were called eccentric. They were called weird. But the stigma attached to autism has reduced. ... These are not kids who cost you a ton who need one-on-one education."

Greene also believes "the report fails to consider other innovations in medical technology that have reduced other problems. In total, technology has likely prevented more disabilities than it has caused."

Looking ahead Berman and Perry's study cites an increase in medical problems in children, quoting a 1999 report by the California Department of Developmental Services.

From 1987 to 1998, enrollment in California schools increased 20 percent, and autism increased 273 percent, cerebral palsy increased 43 percent, epilepsy by 31 percent and mental retardation by 49 percent.

Premature births are another factor. The number of babies born nationwide weighing less than 3.3 pounds who survive to 5 years old has nearly tripled from the 1980-1985 period to 1995-2000, from 18,200 children to 49,500 children. Fifty percent of those children will have significant cognitive difficulties without spastic motor problems, according to the MASS study. Many are mentally retarded or have severe learning disabilities.

Schools with poorer populations, mostly cities and rural areas, are hit the hardest, the study says, because children "are more likely to be born prematurely and suffer greater difficulties from this than children of

middle- and upper-income families."

More children are living in poverty - 18 percent now. And as the economy declines the number will grow, Berman said.

Educators need more money to cover the growing cost of special education, he added, and as a society, there needs to be long-term investment in medical research and a "re-weaving of the social web, to set up the kinds of protections so we don't have so many children living in poverty."

"We need a solution that does not blame the children or those working with these children and does not pit regular education against special education," Berman said.

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PUBLIC HEALTH

As Vaccination Rates Decline in Ireland, Cases of Measles Soar

When a British scientist published research five years ago suggesting a link between autism and a common childhood measles vaccine, the news caused a wave of fear among parents and a steep decline in vaccination rates.

Subsequent studies debunked his findings, and British health authorities worked hard to make sure that more than 90 percent of children 12 to 15 months old were vaccinated each year.

Prime Minister Tony Blair even turned the vaccination of his son into a news media event.

Across the Irish Sea, however, public health officials blame latent fears about the M.M.R. vaccine — for measles, mumps and rubella — for a measles outbreak. The vaccination rate has fallen to 63 percent in parts of Dublin and 72 percent nationally; the internationally accepted level for controlling the disease is 95 percent.

Over six weeks in December and January, the National Disease Surveillance Center recorded 100 cases of measles. It typically sees about 30. Its director, Dr. Darina O'Flanagan, issued a national advisory and sought a meeting with the government health minister to revise immunization strategies. Now, two weeks later, 100 more cases have been recorded.

"I'm seriously worried," Dr. O'Flanagan said in a telephone interview. Ireland has "topped the list" of European countries with measles outbreaks in recent years, and "it's not an enviable position to be in," she said.

But some Irish doctors say low immunization levels here are a chronic problem, citing overworked health workers and an outdated system that makes it hard to track children who need vaccinations.

"It goes back generations; we've always had an appalling vaccination rate in Ireland," said Dr. Maurice Gueret, a general practitioner in Dublin. The widely publicized fear that the M.M.R. vaccine causes autism is "a convenient way for the health authorities to let themselves off for the fact that we're very, very bad about vaccinating our children," he said.

A measles epidemic last struck Ireland in 2000, when 1,603 children were infected, 350 were hospitalized and 3 died. The disease has been all but eliminated in the United States, where only a handful of cases are reported each year, and those usually are sick people coming into the country.

Dr. O'Flanagan met with Micheal Martin, the health minister, on Thursday to discuss the possible use of American and Australian strategies, like mandatory immunizations for children before they can attend elementary school, and increased welfare benefits for low-income families when their children are vaccinated.

Officials called for increased education to overcome apathy and public skepticism about official health services, said Dr. James Reilly, chairman of the Irish Medical Organization's committee for general practitioners. High-profile scandals, like one involving blood products contaminated with H.I.V. and hepatitis C, have tarnished the health service's reputation in recent years.

Another part of the problem is that Ireland's regional public health bodies are large, unwieldy organizations that are also responsible for a range of social services that deflect resources from purely medical issues like immunizations. Vaccination records are largely kept on paper, and regions with computerized systems are incompatible with one another, making it difficult to follow unvaccinated children when their families move.

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Vaccine 'Blocked' In Bid To Boost MMR in UK

The government has been accused of blocking imports of measles and mumps vaccines, sending prices soaring to force parents into using the controversial measles, mumps, rubella (MMR) triple jab.

Doctors in Edinburgh, Glasgow and London are now charging more than £100 for a single measles or mumps vaccine because it is increasingly difficult to get them in the UK.

In recent months, the government has cut supplies further, restricting them to only 25 doses per day.

Dr Richard Halvorsen, a GP in central London who provides the single vaccines for parents concerned about MMR, says the government will be responsible for a measles epidemic unless it changes its policy.

He said: "The government is blocking the amount coming in. Some believe they are putting pressure on importers and producers not to sell to people in this country. They control the amount coming in to make it more difficult for us to get the single vaccines."

Concern that the MMR vaccine could be linked to autism and bowel disease in children has sent immunisation levels plummeting.

Campaigners who want the single jabs to be made available on the NHS believe the triple vaccine is too much for a baby’s fragile immune system to cope with in one shot.

Stringent Department of Health rules state parents can only have single vaccines if they apply for a private prescription. Suppliers must go to a licensed importer on a named patient basis, resulting in further bureaucracy and cost. Doctors say they are struggling to meet demand, which has increased prices, and many parents are prepared to pay £300 or more for a course of injections.

The vaccines are imported from Switzerland, France, Germany and the United States, but the shortage has left a backlog of children waiting up to six months. The concern for parents and health officials is that children could get infected in the meantime.

"Everyone I know has had trouble getting the single mumps vaccine and it’s also difficult to get measles," added Dr Halvorsen. "I charge £100 a vaccine, which sounds astronomical but my overheads are huge. It’s so bureaucratic. Getting hold of the single vaccines is a nightmare."

Yohani De Silva, of Direct Remedies, which also sells single vaccines,

said: "We’re worried about supplies because the government has introduced a new rule where you’re only allowed 25 doses a day. Previously you could get as many as you liked. When we ask the Department of Health why we can’t get the vaccines they refuse to comment."

Paul Shattock, the director of the autism research unit at the University of Sunderland, said: "This is a political decision to force people to get MMR." But a spokesman for the Department of Health said: "We categorically reject that we’re restricting the single vaccines.

"The mumps vaccine is getting scarce because the main manufacturer in the US has halted production. All the issues surrounding manufacturers tying up the single vaccines is a matter for them."

Although MMR is the most controversial vaccine in the UK, autism campaigners in the US believe the source could be the diphtheria, tetanus and pertussis (DTwP ) jab given three times to babies by 16 weeks.

The UK still uses the low-cost DTwP brand, which deposits 25 micrograms of ethyl mercury into a child.

US health authorities have said the substance has a "biologically plausible" link to autism and DTwP has been ordered out of medicine in the US, but remains the recommended injection in the UK.

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FUNDRAISING

Cure Autism Now Foundation and Maple Leaf Bakery Partner for the Cure

PRNewswire - Cure Autism Now Foundation, the largest private funder of biomedical research into autism, and Maple Leaf Bakery announced that starting last week through April 11, a donation will be made to the Foundation when consumers redeem a coupon with their purchase of California Goldminer Sourdough Bread.

Joining Cure Autism Now and California Goldminer sourdough for the second annual promotion are 5,358 supermarkets nationwide. From February 3 - April 11, 2003, shoppers will have the opportunity to redeem a coupon for $0.25 off their purchase on a loaf of California Goldminer sourdough. With every coupon redeemed by the shopper, a $0.25 donation will be made to the Cure Autism Now Foundation. Coupons can be found at California Goldminer sourdough merchandising displays in the in-store bakery of participating supermarkets. The goal of raising $40,000 will be used to fund a scientist for one year.

Rick Anderson, Executive Vice President, Marketing and Retail Sales North America, Maple Leaf Bakery, and father of an autistic son, approached Jon Shestack, Hollywood producer, co-founder of Cure Autism Now and also father of an autistic son after searching on the Internet for autism groups. The two men had a lot in common including wanting to raise funds and spread awareness about autism. They both contribute an extraordinary part of their lives to help provide their children with the best environment possible.

"With the money raised from the California Goldminer Sourdough promotion, not only will we help accelerate the autism research process, but consumers everywhere will know that they contributed to a wonderful cause," said Anderson.

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First Walk F.A.R. Event For Maryland Will Take Place April 5

Cumberland’s first annual Walk F.A.R. for the National Alliance for Autism Research will be held April 5 from 9 a.m. to noon at Allegany College of Maryland. Participants will walk the mile-track to raise money to fund autism research. NAAR is the first national non-profit organization in the country dedicated to funding biomedical research to find causes, prevention, effective treatments and, ultimately, a cure for autism.

Marcy Hardinger is responsible for bringing Walk F.A.R. for NAAR to the Cumberland area. Hardinger’s daughter, Hannah, age five, was featured in a Times-News article, Oct. 1998. At that time, Hannah was only 15-months-old and had not been conclusively diagnosed. Her mother was quoted as saying, “They said she would never crawl, they said she would never sit up or stand. Now they’re saying, ‘Let’s not say what she’ll do, let’s just watch her.’"

Since that time, Hannah has been diagnosed with a form of autism called Pervasive Developmental Disorder. In spite of her limitations, she has made amazing strides since her birth on July 25, 1997. She can walk and run, and although she is considered “non-verbal,” she can now say “up,” and she is able to make her wants and needs well-known in other ways. The most amazing thing about Hannah is that she has the ability to give and receive love and she is now able to make brief eye contact. This is because her parents and family, especially her mother, spend so much time working with her so diligently to achieve the smallest goals. Hannah is bright, full of love, and totally amazing.

It’s because of Hannah’s life that Walk F.A.R. for NAAR is now taking place in Cumberland. The event will include music, entertainment and more. Teams are now forming and registration is being held. Individuals who wish to be team captains and form a team should register now to ensure an invitation to the Team Captain Luncheon scheduled for Feb. 15 at the Ali Ghan Shrine Club. During the luncheon, captains will receive everything needed to form their team, as well as an education on autism. Teams may consist of any number of walkers.

To register a team for Walk F.A.R. for NAAR, send your name, address and phone number, along with your team name to: Marcy Hardinger, 179 Whitetail Lane, Bedford, PA 15522, or call (301) 697-2543.

Copyright © 2003 Cumberland Times-News

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