TACA Talk About Curing Autism - Help, Hope and Support

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Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.

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TACA E-Newsletter

January 2010 #2

Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.

We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.

We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.

1. Find a TACA Meeting

Come to a TACA Meeting!

TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books, CDs and DVDs that can be checked out by members at no charge.

Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.

Are you wondering what happens at a TACA meeting? Watch our video.

2. Join Us for Coffee Talk!

Come and receive some extra support or to chat all topics related to autism and meet other TACA families at these informal, monthly get-togethers.

› Birmingham, AL
› Huntsville, AL
› Bakersfield, CA
› Burbank, CA
› Long Beach, CA
› Orange County, CA
› Redlands, CA
› Visalia, CA
› Indianapolis, IN
› Gaithersburg, MD
› Mercer, NJ
› Las Vegas, NV
› Ardmore, PA
› Exton, PA
› Virginia Beach, VA
› Tacoma, WA

3. Ante Up for Autism - Phoenix, AZ

Matthew Kemp, centerfielder for the Los Angeles Dodgers, will co-host a celebrity casino event to benefit TACA with Dave Stewart, former pitcher for the Oakland A’s and World Series MVP.

Kemp and Stewart host the celebrity-packed evening Ante Up for Autism, at the Penske Racing Museum in Phoenix, Arizona on Saturday, March 6, 2010. Joining them will be a line-up of Major League Baseball’s current players from the Dodgers, Angels, Oakland A’s, San Francisco Giants and more. Special guests include Donovan McNabb, Manny Ramirez, David Justice, Danica Patrick, Rickey Henderson and many, many more!

“TACA has changed my view of autism as a hopeless, incurable disorder,” said Kemp. “When my brother Carlton became one of more than 1.5 million people affected by autism it was a confusing blow to me. I have always wanted a little brother that I could play ball with, but Carlton’s impaired ability to socially interact and communicate made it impossible for that to happen. TACA has given me hope that playing ball with him in the near future a possibility.”

4. Daily Autism Updates for Families

All news related to autism: AgeofAutism.comFor daily updates to all autism legislative issues:

5. The Chicago Tribune Takes Another Swipe at the Biomedical Community

Dr. Boyd Haley is the Newest Target

January 18, 2010

Prepared by Rebecca Estepp

Since May of last year, the Chicago Tribune has unfairly criticized and inaccurately generalized the treatment of underlying medical conditions of children affected by autism. Four reports were written in 2009 by Trine Tsouderos and Patricia Callahan. These reports have made me wonder why the Tribune and these two reporters are investing such a great amount of time and effort to denigrate medical treatment for children affected by autism. Their accounts are directly contradicted by thousands of families whose children have made substantial and significant improvements with medical treatment.

A Quick History of the Tribune’s reports

To read the previous stories by Trine Tsouderos and Patricia Callahan click the following links:

The Tribune’s newest report

Trine Tsouderos (without Patricia Callahan) has written another installment of the investigative series looking at autism treatments. Her report released on January 17, is a critique of Boyd Haley, Ph.D., his company CTI Science and their dietary antioxidant supplement OSR #1. Ms. Tsouderos infers several things in this story. She suggests that OSR #1 is a potent industrial chelator that has not gone through proper safety testing. She also infers that OSR #1 is being marketed specifically to children with autism.

CTI Science has an informative "Frequently Asked Questions" section on its website, which clearly defines OSR #1. I found the following statements on their site:

What Is OSR#1®?

OSR#1® is a dietary antioxidant that is a combination of two naturally occurring substances. OSR#1® was extensively tested in animals by commercial Food and Drug Administration certified laboratories and found non-toxic at levels thousands of times higher than the amount recommended for human use. OSR#1® is made, encapsulated, packaged and stored under cGMP conditions

There is an internet rumor that OSR#1® is an Industrial Chelator. Is this true?

No. OSR#1® as produced by CTI Science is not now and has never been marketed or tested as an environmental or industrial chelator. Nor has OSR#1® been tested in humans as a chelator by CTI Science, and no claims of chelation treatment use are made by CTI Science.

Has OSR#1® undergone safety testing?

Yes. OSR#1® was subjected to extensive animal testing to determine its safety. In lab animal experiments, no level of toxicity was detected even at exceptionally high levels of 1 to 5 grams/kg body weight. Also, OSR#1® was initially subjected to a food safety study on 10 patients under direct physician observation at 500mg/day for 60 days. An IRB approved evaluation of the over 200 blood/urine items as measured by commercial laboratories three times during this food safety study found no significant adverse effects for any item. Currently, other larger food safety studies for OSR#1® are underway. For more information, please refer to the safety and pharmacokinetics information.

Is OSR#1® being marketed as a treatment for Disease or Disorder?

No. OSR#1 is not a drug and no claim is made by CTI Science that OSR#1 can treat or cure any illness or disease. OSR#1 is a dietary antioxidant. OSR#1 is not FDA approved for any medical treatment or protocol.

OSR#1® is a dietary antioxidant which helps scavenge free radicals and helps maintain glutathione levels. Low glutathione levels are an indicator of oxidative stress. Ask your medical professional for more information about the harmful health effects of free radicals and oxidative stress, and whether your blood glutathione levels should be tested.

As you can read from CTI Science’s own website, OSR #1 has been safety tested. CTI Science also reports that OSR #1 has never been tested or marketed as an industrial chelator. They also make no claim that OSR #1 chelates individuals using their product. Furthermore, CTI Science does not suggest or imply to treat or cure any disease. The one claim I found on their site is that OSR #1 is an effective antioxidant.

Read more about OSR #1.

I find it interesting that Ms. Tsouderos did not include one consumer of OSR #1 in her report who had an adverse reaction. Could it be that she was unable to find someone that had a problem? And if that is the case, why is this a story?

Dr. Haley has made important contributions to the autism community over the years. He deserves our support and moreover, the Tribune should hear directly from the autism community. Please leave a comment for the Tribune under Ms. Tsouderos’ report.

6. This Emotional Life on PBS

This Emotional Life is a two-year outreach campaign anchored by a PBS series that examines the science behind our emotions, the challenges to our well-being, and the keys to happier lives. This groundbreaking, multi-platform endeavor is focused on emotional well-being and happiness, designed to help people foster stronger social relationships. Spearheaded by Allen's Vulcan Productions, the project includes a three-part, nationally broadcast series on PBS in early 2010, a dynamic and content-rich website, a national outreach campaign, and education toolkits created to support two topics within this series we felt required additional action.

One of the stories highlighted in the film is a young man named Jason, a 29-year old man with Asperger syndrome. Take a sneak peak at Jason’s story. The focus of the entire series always circles back to the most important aspect of all the topics discussed, relationships as a support system. www.pbs.org/thisemotionallife

7. New Childhood Vaccines Schedules Released

By Serena Gordon
HealthDay Reporter

MONDAY, Jan. 4 (HealthDay News) -- Boys should get the human papillomavirus (HPV) vaccine to protect them against genital warts, and all children should receive the H1N1 vaccine to guard against swine flu, according to updated guidelines on childhood and teen vaccines.

The new vaccine schedules -- issued by the American Academy of Pediatrics, the U.S. Centers for Disease Control and Prevention and the American Academy of Family Physicians -- also recommend using combination vaccines whenever possible.

"These are life-threatening illness that vaccines prevent, and if you have a combination vaccine that's safe and effective and requires one less stick for your child and one less trip to the doctor, it makes sense to me -- as a father -- to think about that," said Dr. David W. Kimberlin, a professor of pediatrics and co-director of the division of pediatric infectious diseases at the University of Alabama at Birmingham. Kimberlin is a member of the committee that created the new immunization schedules.

The new vaccine schedules are published in the January issue of Pediatrics and online on Jan. 4.

The most significant changes are:

A recommendation that children older than 6 months receive the H1N1 influenza vaccine.
A newly licensed HPV vaccine for girls, known as HPV2, to protect them from cervical cancer, which can be caused by certain strains of HPV. Girls should get their first dose of either the HPV2 or the earlier HPV4 vaccine, which is still considered effective, around age 11 or 12.
A suggestion that a three-dose series of the HPV4 vaccine can be given to boys between 9 and 18 years old to prevent genital warts.
A statement that the use of combination vaccines are generally preferred over separate injections.
The need to revaccinate some high-risk children who have already received the meningococcal conjugate vaccine (MCV4). Kids at high risk tend to be those with immune system disorders. Booster shots aren't recommended for those whose only risk factor is living in a dormitory setting, according to the new vaccine schedules.

Overall, Kimberlin said he thinks most parents are following these recommended schedules and protecting their children against what can be life-threatening illnesses. However, "parents are inundated with misinformation or incomplete information about vaccinations," he noted. "And, with all the noise out there, people start thinking there might be something to what they're hearing."

Dr. Michael Green, an infectious disease specialist at Children's Hospital of Pittsburgh, said that although most children are vaccinated, "there is a fairly large cohort of kids who don't receive optimal immunizations either for religious reasons, or their parents don't believe in immunizations because of health concerns, such as a fear of autism."

But the data has consistently shown that the measles vaccine doesn't cause autism, he said. Measles, on the other hand, can cause brain damage, or even kill children, explained Green. And, while some parents may think that they don't have to worry about these diseases because most U.S. children are vaccinated, an outbreak for unvaccinated children might be only a plane ride away. Last spring, said Green, someone visiting from another country brought measles with them. They were in close proximity to an unvaccinated American family who then contracted the measles. The outbreak ended quickly and without any serious consequences, but others might be more severe, he warned.

"People forget that when there used to be measles that kids died, or they ended up with brain damage. The risk-to-benefit ratios with today's vaccines are tremendously slanted to the benefit side. And, yet between every one to three months, I see a child with a vaccine-preventable illness," said Green.

"The vaccines we have today are the safest vaccines we've ever had, and I hope that parents recognize that it is a matter of life and death, and that they choose to do everything they can to protect their children," said Kimberlin. "Time and time again, when immunization rates fall, diseases come back, and then the immunization rates go up again."

8. Healing Our Autistic Children

The web site www.healingourautisticchildren.com and the Healing Our Autistic Children Facebook group are both up and running. The book's official release date was January 5. The publisher had tremendous pre-orders, and the book is supposed to be on the front tables at Barnes and Noble as well as Borders for the first couple of weeks, and it's supposed to be featured in the parenting section at Amazon.

I'm very grateful to all of you for your interest in helping to get the word out about this book- all I wanted was for a parent to be able to give the book to their doc and have the doc be willing to help. That happened with an amazon previewer- she took the book to her pediatrician who read the book and ordered many of the labs. He called her the next morning to tell her that her 9 year old PDD/gifted son who was diagnosed at 4 had anemia and celiac disease. They changed his diet, and, well, you know the rest.

I feel tremendous hope that we'll help some children, and that we'll succeed in communicating with some doctors (without waiting for endorsement by huge physician organizations) about the science of autism.

Thank you for the gift of your time and your help in continuing to get the word out – autism is a treatable medical illness.

Julie Buckley

9. UC Davis researchers find California autism clusters, but the cause is a bit of a surprise

Los Angeles Times

UC Davis researchers searching for autism clusters in hopes of finding an environmental cause for the disorder have identified 10 clusters around the state, but the source of the clusters is not exactly what they expected. The clusters, including five in metropolitan Los Angeles and one in San Diego, are centered on regional developmental services centers in areas with highly educated parents, primarily Caucasians, with high incomes. In short, what they found were clusters of increased diagnostic rates for autism. In one respect, the results were not surprising because it has long been known that high-income, highly educated white parents are more likely to have their children diagnosed with autism and more likely to have them diagnosed at an early age.

"Looking at clustering is often a way to uncover leads about problems in the environment," said epidemiologist Irva Hertz-Picciotto, the senior author of the study. "Mapping has a long history of being a way to get clues" about causes of disease. She was, indeed, surprised by the findings -- "not that there are clusters with parents with higher education, but that it was so consistent across the board." In virtually every cluster they identified, the rate of autism was about twice as high within the cluster as in adjacent regions.

Hertz-Picciotto and her colleagues obtained birth records for 2,453,717 children born in the state between 1996 and 2000. By 2006, the children had all reached at least age 6, the age by which diagnosis of autism is generally accomplished. State records showed that about 9,900 autism cases were in the records of the Department of Developmental Services. The team reported in the journal Autism Research that they identified 10 clusters of autism among the 21 regional offices of the department and two potential clusters. The clusters were primarily in the high-population areas of Southern California and, to a lesser extent, in the San Francisco Bay area.

The clusters were:

The Westside Regional Center in Culver City, which serves western Los Angeles County, including Culver City, Inglewood and Santa Monica.
The Harbor Regional Center, headquartered in Torrance, which serves southern Los Angeles County.
The North Los Angeles County Regional Center, in Van Nuys, which serves the San Fernando and Antelope valleys. Two clusters were in this region.
The South Central Regional Center in Los Angeles, which serves Compton and Gardena.
The Regional Center of Orange County in Santa Ana.
The Regional Center of San Diego County, which serves San Diego and Imperial counties.
The Golden Gate Regional Center in San Francisco, which serves San Francisco, Marin and San Mateo counties. There are two clusters in this area.
The San Andreas Regional Center in Campbell, which serves Santa Clara, Santa Cruz, Monterey and San Benito counties.

Increased incidence was also noted in two other regions, the Central Valley Regional Center in Stockton and the Valley Mountain Regional Center in Fresno. The incidence of autism was not as high in those regions, however.

Because the team analyzed birth locations and not the location of diagnosis, it is highly unlikely that the parents moved into the cluster regions to seek care, Hertz-Picciotto said.

"In the U.S., the children of older, white and highly educated parents are more likely to receive a diagnosis of autism or autism spectrum disorder," said lead author Karla C. Van Meter, who was a graduate student when the data were collected but is now at the Sonoma County Department of Public Health. "For this reason, the clusters we found are probably not a result of a common environmental exposure. Instead, the differences in education, age and ethnicity of parents comparing births in the cluster versus those outside the cluster were striking enough to explain the clusters."

The team is now looking elsewhere for possible causes. Some previous studies have hinted that exposure to pesticides may play a role and a study in Texas showed that exposure to mercury in the environment --but not in vaccines -- could be a causative agent. "We are casting a wide net, looking at everything we can--pesticides, medical conditions in the mother, medications, flame retardants, etc.," Hertz-Picciotto said. The problem, she conceded, is that, if the exposure is truly widespread, then linking it to autism will be very difficult.

-- Thomas H. Maugh II

10. Parents left brokenhearted over death of autistic son

Harry Horne-Roberts
Tan Parsons, Ham & High

THE heartbroken parents of a young autistic man who died of heart failure are demanding a full inquiry into their son's death.

Harry Horne-Roberts, 20, died in his sleep on December 16, 2009, just two years after leaving the home he shared with his parents Jennifer and Keith in Archway.

His mother, who is a barrister, said: "He was a very beautiful boy - very sweet. He was like an angel, just a beautiful creature. He was lovely, very clever - a brilliant mind behind his autism.

"We took him for short seaside breaks and took him swimming. We went for walks with him and his favourite occupation was going to museums and libraries. He would get anxious sometimes because of his autism and couldn't sleep."

Harry lived at home with his family in Cheverton Road until he was 18 but he sometimes tried to run away and was once stopped from trying to swim across the Thames.

His parents say that when he was anxious he would stay up late and bang on the walls. Finally they felt they were unable to look after him any more and at the age of 18 he went to live in separate supported accommodation.

Harry developed late onset autism when he was a one-year-old, which his mother believes was caused when he received the MMR vaccination.

His death certificate records that he died from natural causes but his parents are calling for an inquest and are preparing a formal complaint to the Barnet, Enfield and Haringey Mental Health Trust over the care their son received.

Following his death they discovered he had been treated with chlorpromazine. After conducting their own research into the drug they believe it should not have been used on him and that it contributed to his death.

Up to the age of 18, at which point his parents were excluded from discussions about his healthcare, he had not been given any drugs. Two days before his death he had appeared healthy and active when on a walk with his parents in Epping Forest.

Harry's funeral was held on Monday (January 4) at a packed St Michael's Church in Highgate attended by friends, family members and people who had worked with him.

He was described by staff at the Tavistock Centre, where he was treated, as highly intelligent and had been accepted for a place at the Nordoff-Robbins Music Therapy Centre in Gospel Oak where staff had found he was highly musically talented.

A gifted artist, his work had been exhibited in several centres in London, and he also excelled as a composer, musician, singer, film maker and model maker. He had perfect pitch and tuned the musical instruments at the Bridge School near Kentish Town, which he attended until he was 19.

In the course of their research Mr and Mrs Horne-Roberts found reports suggesting that anti-psychotic drugs like chlorpromazine can cause heart defects leading to sudden and unexpected death. A spokesman for the Barnet, Enfield and Haringey Mental Health Trust said: "We are sorry to hear of the death of Harry Horne-Roberts and extend our condolences to his family and friends.

"We understand that the coroner has concluded that the death was due to natural causes. However, if the family has a concern about any aspect of Harry's care or treatment, we would encourage them to contact us so that we might investigate fully."

Harry is survived by his parents, his sister Francesca and his half brother William.

11. Dealing With the Financial Burden of Autism

By WALECIA KONRAD, New York Times
Published: January 22, 2010

WHEN Jeff Sell’s twin sons were found to have autism 13 years ago, he, like so many other parents in the same situation, found himself with a million questions: Will my children be able to function? What are the best treatments and where do I find them? How will this affect the rest of my family?

And besides those monumental worries, Mr. Sell kept asking himself another fundamental question as he began the long string of doctor and therapist visits with his sons: “How in the world am I going to pay for all this?”

Autism trends, treatments and therapies routinely make headlines. Often overlooked, though, is the financial burden for many families with autistic children.

Treatment is extremely expensive. Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health.

That figure includes medical costs like doctor visits, prescriptions and occupational and speech therapy, as well as expenses for things like special education, camps and child care, said Michael Ganz, the author of the study, who is now a health care consultant.

“It can cost $3.2 million to take care of an autistic person over the course of his or her lifetime,” the study said.

More families are grappling with the disorder than ever before. One of every 110 8-year-old children in the United States has been diagnosed with autism — and one of every 70 boys, according to the latest survey from the Centers for Disease Control and Prevention, released last fall. That is up from one in 150 children in a comparable report released in 2007.

“The numbers are just amazing,” said Pat Kemp, executive vice president of the advocacy group Autism Speaks, “Unless we attack this like a national health crisis, we’re going to have a huge economic crisis on our hands.”

Certainly families feel the financial strain. Many health insurance policies do not cover autism treatments, while those that do often have severe limits. And there is very little government or private financial assistance available.

In many cases these children will need assistance all their lives, Mr. Ganz points out. Making sure there is money for the future is something else parents worry about.

When his sons received their diagnosis, Mr. Sell was practicing personal-injury law in Texas, and he began paying for many of their treatments from his own income and savings. In 2005, as he became more involved in autism issues, he joined the staff of the Autism Society of America in Bethesda, Md., where he is now a vice president.

His sons are now 15. One, Joe, is talkative and considered “high functioning.” The other, Ben, is nonverbal with profound autism.

“What works for one child doesn’t necessarily work for the other,” Mr. Sell said. “So we’re talking about finding and paying for twice as many treatments.”

In the early years, the Sell family had some autism coverage under Mr. Sell’s health insurance. But claims for certain therapies, tests and treatments were often denied. “I was very aggressive about appealing those denials, and I often won,” Mr. Sell said.

But even with coverage, Mr. Sell found he needed to pay enormous amounts out of pocket to come close to giving his sons the 20 to 40 hours of behavioral therapies each week that were often recommended. (Eventually, as discussed below, Mr. Sell was also able to obtain financial assistance through a special part of the Medicaid program.)

Although direct financial support may be scarce and hard to obtain, there are several autism information and advocacy groups that routinely help parents navigate financial hurdles. Here is a road map parents can use to get started.

CHECK YOUR INSURANCE Coverage for autism treatments is still far from common, but it is improving. Some large employers offer policies that cover treatment, and 15 states have passed laws mandating at least some autism-related coverage. The Autism Society’s Web site lists the relevant states. (That section of the site is still under construction, but you can scroll down to see the states.)

In addition, Maine and New Hampshire both have legislation pending that could pass soon, Mr. Kemp said.

If you do have coverage, watch for limitations. Because treatment for autism is so individualized, there are few uniform standards or protocols for insurance companies to follow. That means parents often have to argue that a certain therapy or treatment is necessary. Also, be sure to check any caps on treatment, Mr. Sell warns. What may look generous — say $36,000 a year — can be spent quickly. Or there may be limits on how many sessions of a particular type of therapy will be paid for each year.

And you will want to coordinate your insurance coverage with the services you may be receiving from your child’s school. If an occupational therapist sees your child regularly in school, for example, you may want to save your insurance dollars for social interaction therapies.

In addition, you may need to be especially aggressive about coverage for some medical conditions. Gastrointestinal problems, for instance, are extremely common in autistic children.

Mr. Sell found himself fighting for such coverage for Ben, his nonverbal son. The insurance company had denied the claim for gastrointestinal testing, saying that because Ben’s behavior problems were related to autism, the testing was not covered.

Mr. Sell, convinced Ben was in pain and could not tell anyone what was wrong, appealed and won. The tests showed that Ben had ulcers and lower-intestine problems that still occasionally flare up and require treatment.

MEDICAID WAIVERS Some states offer Medicaid coverage for children with autism without taking the family’s income into account — only the child’s diagnosis. This is usually reserved for fairly serious cases but is worth exploring, Mr. Sell said.

“This was a godsend for us,” he said. The waiver, he said, allows families access to services that private insurance won’t cover and that they wouldn’t be able to afford otherwise.

With the waiver, Mr. Sell was able to get more home-based speech and occupational therapies for his sons to supplement the sessions they receive at the public school they both attend. Medicaid also covers recreational therapy during which a specialist takes Ben and Joe on hikes and other outings, giving the parents some downtime.

To see if your child is eligible for a Medicaid waiver, go to the Centers for Medicare and Medicaid Services Web site and click on your state.

Because Medicaid is one of the few government lifelines available, waiting lists for waivers can be extremely long. Mr. Sell, for example, waited nine years to get waivers for his sons.

“Just go ahead and get on the list and try not to be too discouraged,” advised Mr. Sell. “Many states are moving faster now.”

GO LOCAL Many autism advocacy organizations, including Autism Speaks and the Autism Society of America, are affiliated with local chapters throughout the country. In addition, most states, counties, towns and cities provide lists of local autism resources and support groups.

It is people in the local groups who will know all the resources available. They can also help you keep up with the latest research, so you don’t spend time and money chasing the many unsubstantiated “cures” out there. They will also have lots of practical advice, like which dentists, optometrists and even barbers are good with autistic children.

“You think going to the barber is no big deal?” Mr. Sell asked. “Just try it with an autistic child.”

OTHER RESOURCES A handful of organizations like Easter Seals and the National Autism Association offer financial help to struggling families. Autism Family Resources and United Healthcare Children’s Foundation also offer grants to pay for autism treatments.

12. GMC Fitness to Practice Hearing on Dr. Wakefield, Professors Murch and Walker-Smith

Conclusion to finding of facts: GMC, London 28 January, 2 pm

CryShame is again organising a demonstration of support for the doctors outside the GMC building on the day, and we urge you to join us. This will be a landmark day in the long and exhausting fight to get justice for our children. Anyone attending the hearing over the last few years will be in little doubt of what the outcome should be. Each of the doctors presented a robust defence backed by solid documented fact to indicate that none of the allegations constitutes anything approaching professional misconduct. On the contrary, the GMC hearing has served to emphasise the dedication, care and courage of these three men in the face of a political trial that was triggered by a journalist and manipulated by a desperate system.

Please be there to support the doctors. Current expectations are that the decision will be announced at 2 pm on the 28th Jan, but do refer to the CryShame website where news will be posted of any possible changes.

(The GMC can change hearing dates with 24 hours notice)

You can also show your support by joining our facebook group

Hope to see you there.

The GMC is at Regent's Place, 350 Euston Road, London NW1 3JN, between Euston and Great Portland St. tube stations – about 5 mins walk from Euston and 3 mins from Gt Portland St

Enquires rally@cryshame.com

Background to the fitness to practice hearing
After a protracted hearing which ran the course of over two years ‘The ‘Finding on Facts’ on the case against Dr Wakefield and Professors Murch and Walker-Smith is expected to be announced by the GMC in London on Thursday 28th January, 2010, at the beginning of the afternoon session. At this stage, the announcement will relate to which, if any, of the allegations against the doctors are considered to be upheld by factual evidence presented to the adjudicating panel.

Possible outcomes range from exoneration on all counts, to all allegations being upheld, with the possibility of a decision in which some are upheld and some are dismissed.

Following the ‘Finding on Facts’, there will be additional days set aside, should they be needed, in which consideration is given to (a) the seriousness or otherwise of any particular findings and (b) any sanctions deemed appropriate given the decisions taken in (a).

13. Judgement day for MMR rebel

An investigation that has blighted doctor's life for 12 years finally approaches conclusion

By Sally Beck
Last updated at 11:57 PM on 23rd January 2010

The longest and most complex disciplinary hearing ever held by the General Medical Council will reach a conclusion on Friday.

Dr Andrew Wakefield, the gastroenterologist who in 1998 raised the possibility of a link between autism, bowel disease and the MMR jab, will learn whether he has been found guilty of ethical breaches in research methods.

Since June 2007, Dr Wakefield and two colleagues have faced an unprecedented inquisition that has cost in excess of £1million. The verdict has been postponed four times.

But even if Dr Wakefield is found guilty of serious professional misconduct, he will have to wait another six months for the bureaucratic wheels to turn at the GMC to discover whether he will be struck off.

Yet Dr Wakefield is no Harold Shipman. His supporters suggest that his only ‘crime’ was to voice concerns about MMR which embarrassed the Department of Health.

His detractors, meanwhile, say he needlessly sparked a public panic which led to a prolonged slump in the number of children being vaccinated and a consequent rise in measles and mumps.

While Dr Wakefield, 52, believes the GMC should vindicate his professional reputation, in an exclusive interview with The Mail on Sunday he said he fears a ‘political’ verdict.

‘My lawyers feel confident that we have answered all the charges against us,’ he said from his home in Austin, Texas. ‘If there’s any justice, we should be cleared. However, there’s the political backlash to consider. I fear the GMC will want to make an example of us.

‘The issue was not about me, but about how to crush dissent. I scare the establishment because I care and I am diligent. I think they’re terrified because they’ve not done adequate safety studies. I’ve been treated in the standard way in which people who raise these kinds of questions are treated.

‘It’s extremely challenging, but if I fail to stand up to the bullies, the price to be paid is enormous.’

The controversy began when his paper outlining a link between autism and bowel disease – but which didn’t directly blame the MMR vaccine – was published in The Lancet in February 1998.

In 2001, he was forced out of his job at London’s Royal Free Hospital over allegations that his research was flawed, and went to work in America.

And in 2004, he was accused of secretly being paid by solicitors acting for parents who believed their children had been harmed by the MMR jab.

Worse still, the editor of The Lancet said his journal would never have accepted Dr Wakefield’s ‘fatally flawed’ paper if it had known of the alleged conflict of interest.

The editor asked the 13 co-authors of the paper to sign a retraction of any ‘interpretation’ of a causal link between MMR and autism, and ten agreed.

‘But we were being asked to retract an interpretation that we hadn’t made,’ explained Dr Wakefield. ‘The interpretation was that the MMR vaccine caused autism. We had never said that, so we couldn’t retract it.’

Only two of Dr Wakefield’s colleagues, Professor John Walker-Smith and Professor Simon Murch, still stand by The Lancet paper. They, too, are being ‘tried’ by the GMC.

Dr Wakefield uprooted his wife Carmel and four children from their home in London in 2004 to join him in the US, where he carries on his research today.

Meanwhile, a growing body of research from around the world appears to show no evidence of a link between MMR and autism, while the slump in vaccinations in this country has resulted in outbreaks of both measles and mumps, from which at least one child has died.

But Dr Wakefield is unrepentant. ‘I’ve never said don’t vaccinate,’ he insisted. ‘I made it clear that children should continue to be protected using single vaccines. It was the Government’s withdrawal of the option of the single-measles vaccine which has led to this problem.

Parents who were concerned about MMR safety were given no alternative and that’s the reason these diseases have come back.’

Dr Wakefield’s 1998 paper was not in fact about whether the MMR jab caused autism, but whether a group of healthy children who had been diagnosed with autism were suffering from bowel disease.

He said he was asked to investigate the MMR link by some concerned parents.

‘I was always taught at medical school to listen to the patient. It would have been negligent of me to ignore the parents’ concerns,’ he insisted.

‘The MMR was introduced in 1988. Between 1996 and 2000 we had about 1,000 letters from doctors and parents all with the same kind of story – they’d taken their children for the jabs and the children had suffered some kind of event that left them with autism and gut problems.

‘We examined the children and discovered they had a new kind of bowel disease. When we treated the bowel disease, their behaviour improved.’

On the basis of his concerns, Dr Wakefield and his team were given ethical clearance for a small study of a dozen children. The research team discussed at length whether to exclude the fact that the parents of eight of the children felt that MMR was to blame, and decided not to.

They added the following line to The Lancet paper: ‘We did not prove an association between the MMR vaccine and the syndrome described.’

At a Press conference to launch the paper in 1998, Dr Wakefield was asked about MMR and recommended that single vaccines be used until further investigations were carried out. The public scare about autism and vaccination took root within days.

But wouldn’t it have been simpler to omit any reference to MMR?

‘You can’t censor parts of a story you find uncomfortable,’ he said. ‘You can’t corrupt the science. And my opinion has been reinforced since then. It may be uncomfortable for David Salisbury [the Government’s Director of Immunisation], the Department of Health and the pharmaceutical industry, but that’s not my issue. My issue was to establish whether these parental suspicions reflected a real problem.

‘Between 1998 and 2001, we investigated about 160 autistic children for bowel disease, and MMR was mentioned frequently.’

Dr Wakefield’s career was threatened in 2001 when a new Professor of Medicine, Mark Pepys, took over at the Royal Free.

‘One of the first things he did was call me in and tell me, “You no longer form any part of my plans for the future of this department,”’ said Dr Wakefield.

His subsequent resignation put paid to his dreams of a professorship in charge of a new centre for research into autism and bowel disease.

His funding applications were ignored and one pharmaceutical company excluded him from speaking at a conference it sponsored.

‘They cut me off at the knees and hoped that I would bleed to death,’ he said. ‘I couldn’t work in my field in the UK any longer, but doors were opening in the States.

'I was invited to deliver a series of lectures in Florida and met more doctors and scientists who were as concerned as I was about the MMR vaccine.

‘The worst of all this was having to spend three years apart from my family. It was a very lonely life.

'I missed the family dreadfully and the hostile media intrusion has been very tough on my children [Corin, now 12, Imogen, 15, Sam, 19, and James, 21] and that makes me angry. We eventually decided the family would move to Austin.’

His wife Carmel, also a doctor, recalled: ‘We had begun to live separate lives. By 2004, I was raising the kids on my own and it would have been very easy for us just to drift apart. Andy missed birthdays and anniversaries, school concerts and special events. We knew his work was important so we got used to it.’

He has gone on to open Thoughtful House in Austin, a research and treatment centre for children with developmental disorders.

Dr Wakefield and a few like-minded scientists are lonely voices against the vast majority view of the scientific world, which sees no proof of any link between MMR and autism.

He insists, however, that further research will vindicate his beliefs. Three American studies are underway and there is also growing recognition of a link between autism and bowel disease.

‘I have learned what it’s like to be sidelined and ridiculed and I don’t think anyone should have to go through that,’ he said.

‘What has happened to me has taught other scientists that it’s safer never to rock the boat. Doctors are scared to speak for fear that what happened to me may happen to them. And that can’t be good for science.’

14. Birth Weights Fell From 1990 to 2005

Researchers Can't Explain the Two-Ounce Decline in U.S., Worry the Trend Could Lead to Increase in Health Wall Street Journal

By SHIRLEY S. WANG

Mothers are giving birth to lighter babies in the U.S., and no one is quite sure why.

The finding, published Thursday in the Journal of Obstetrics and Gynecology, has potentially troubling public-health implications, if the trend continues. Low-birth-weight babies are at higher risk for a host of health problems.

Between 1990 and 2005, the birth weight of full-term babies in the U.S. declined nearly two ounces to an average of 7 pounds, 7.54 ounces, a reversal of a trend that had seen birth weights climb steadily since the 1950s, according to the study. Babies were also born 2.5 days earlier on average in 2005 than in 1990, the study said.

The small decrease in weight—based on an analysis of nearly 37 million nonmultiple births from a national database—isn't likely to affect the health of the average baby in the study, according to researchers. But the data showed a 1% increase in the number of the lowest-weight babies and suggested the birth-weight decline didn't stop in 2005.

The results are "surprising and unexpected," said Emily Oken, an author of the paper and an assistant professor of population medicine at Harvard Medical School. "We do need to keep a close eye on the babies that are the smallest babies to see if the proportion of those is increasing over time, because they may require extra resources and have extra health concerns," she said.

These data suggest that it may be important for medical professionals to pay attention to the weight of babies born around 37 weeks and 38 weeks, as well as those considered pre-term, or born at less than 37 weeks, according to Joann Petrini, senior adviser to the March of Dimes and assistant research director at Danbury Hospital in Connecticut, who wasn't involved in the study.

Researchers also found a 2% decrease in the number of babies considered large—those over the 90th percentile of weight for gestational age—which is a positive, according to Dr. Oken. Large babies can experience more birth trauma and cause more birth injury to the mother.

The lower-birth-weight trend couldn't be explained by common factors such as how much weight mothers gained during pregnancy, whether the delivery was induced or by cesarean section, the amount of prenatal care, or maternal-health issues such as smoking and hypertension, researchers said. Only babies born at between 37 weeks and 41 weeks of gestation, which doctors consider full term, were studied.

Researchers repeated their analysis in a sample of low-risk women—healthy, educated Caucasians in their mid-to-late 20s—and found that the decrease in birth weight was even more pronounced, suggesting that the trend wasn't the result of changes in the population of mothers.

Other investigators also have begun to note the same trend. "There's no question" about the change in birth-weight pattern, said Michael Kramer, scientific director of the Institute for Human Development, Child and Youth Health at the Canadian Institutes of Health Research, who wasn't involved in the study.

"It is a new trend," he said. "We really don't know why the birth weight has decreased." A similar pattern has been observed in Canada, he said.

Some potential factors that weren't examined in the study include better control of gestational diabetes—when a mother develops diabetes during pregnancy—and more physical activity during pregnancy, said Dr. Kramer.

Babies considered too large, as well as too small, tend to have more health problems in the long run. The optimal size for a newborn is around 4,000 grams, or roughly 8.8 pounds, according to Dr. Kramer. The average baby in the study was found to be smaller than optimal. In 1990, the average birth weight was 3,441 grams, and in 2005 it fell to 3,389 grams, according to the study.

Babies born too small have a greater risk of high blood pressure and diabetes in the long run, said Dr. Oken.

From the 1950s until the 1980s, birth weights climbed as a result of increases in mothers' weight and in the number of pounds they gained during pregnancy, as well as reduced smoking and older maternal age, according to Dr. Kramer.

15.Was the Threat of H1N1 Flu Exaggerated?

Time Magazine
By EBEN HARRELL Tuesday, Jan. 26, 2010

By the summer of 2009, shortly after the H1N1 flu pandemic had first emerged, there was a waiting list for the first several million doses of the forthcoming new flu vaccine. At the head of the line, naturally, were the world's richest nations. "Again we see the advantage of affluence," said Margaret Chan, the head of the World Health Organization (WHO), at a news conference on July 14. "Again we see access denied by an inability to pay." Describing H1N1 as "entirely new and highly contagious," Chan scolded rich countries at the time for hoarding the "lion's share" of the global H1N1-vaccine supply.

Six months later, Chan's admonitions seem prescient. Rich countries' hoards have become massive surpluses, and many nations are now trying frantically to cancel pending orders of vaccines or transfer them to poorer nations. France, which had ordered enough of the vaccine to inoculate its entire population of 60 million, has so far used only 5 million doses and now wants to cancel 50 million doses and sell millions more. Similarly, the Netherlands has a 19 million–dose order for sale to other countries, while Germany is in talks with drug manufacturers to halve its order of 50 million doses and sell off millions of others. Switzerland, Spain and Britain are also considering giving away or selling the millions of doses of the vaccine they have received or have on order. The U.S., which has so far distributed 160 million of the 251 million doses it purchased to doctors, hospitals and other health care providers across the country, has yet to make a decision on whether it will have an overflow and what it will do with any surplus.

(Watch TIME's video "Chicken Eggs and Antigens: How the H1N1 Vaccine Is Made.")

The excess in many countries occurred partly because health officials initially thought the vaccine would require two doses instead of one, and many countries signed contracts with manufacturers under that assumption; it turned out that a single dose was enough to build immunity. But the main reason for the surplus is simply that demand for the vaccine fell far short of what was originally expected. Now, after governments have spent billions of dollars on vaccines that were not needed — France alone spent $1.25 billion — some politicians and health professionals are looking to hold someone accountable.

"WHO advised us falsely. They raised a false alarm," says Dr. Wolfgang Wodarg, who served in Germany's parliament until September, faulting the U.N.'s global health agency for relying on an inadequate definition of a pandemic.

Wodarg notes that the agency declared the H1N1 pandemic based only on the new virus' transmissibility and did not take into consideration the severity of the strain. Wodarg blames the WHO for raising the alarm over a virus with little destructive potential, leading countries to embark on expensive mass-vaccination programs. He has organized a public parliamentary hearing on behalf of the Strasbourg-based human-rights group Council of Europe, titled "The Handling of the H1N1 Pandemic: More Transparency Needed?" The hearing, scheduled for Jan. 26, will explore the question of whether the WHO and governments overreacted to the threat of H1N1.

Keiji Fukuda, the WHO's special adviser on pandemic influenza, who will head a delegation to the Strasbourg hearing, counters that the WHO's definition of influenza pandemics has always been based on transmissibility and has never had anything to do with the lethality of a virus; it was no different with H1N1. In response to accusations of overreaction to what has amounted to a mild disease, Fukuda says that once the 2009 H1N1 pandemic had been declared, "WHO consistently made it clear that it could not predict the future course of the pandemic but consistently provided sober, balanced and scientifically supported information and guidance."

Fukuda says also that claims that H1N1 is a mild pandemic are wrongheaded. "There have been over 14,000 deaths that have been laboratory-confirmed, many in young, previously healthy people. Who is going to tell their families that the virus is mild?" Fukuda wrote to TIME in an e-mail.

Indeed, it is not difficult to imagine an alternate scenario in which critics would now be accusing the agency of failing to warn countries properly of the H1N1 threat. Hugh Pennington, a microbiologist at the University of Aberdeen who has advised the British government on past public-health crises, says the WHO was obligated to raise the alarm as soon as H1N1's spread matched the medically accepted definition for a pandemic. He points out also that early news reports from Mexico and the U.S., where the virus first emerged, suggested a highly lethal disease.

Still, Pennington says there are lessons to be learned. He says the vaccine surplus in many cases can be ascribed in part to countries' own pre-existing pandemic-preparedness plans. Many such plans, which were put in place in the mid-2000s, were based on the worst-case-scenario assumption that the next pandemic virus would be some variation of the highly lethal H5N1 bird-flu virus, which has so far killed 263 people. The U.K.'s plan, for example, which was automatically enacted when the WHO declared the H1N1 pandemic, predicted between 50,000 and 750,000 deaths from a flu pandemic. So far, there have been 400 British deaths from H1N1.

As part of their plans, many governments lined up multibillion-dollar advance-purchase agreements with pharmaceutical companies to buy vaccines during a pandemic. When the WHO declared H1N1 as such, governments were locked into these contracts, if not legally then politically — amid news reports of a new and potentially lethal virus spreading around the globe, governments could not responsibly pass on the option for vaccine. In this context, governments may have felt the only prudent course was to err on the side of caution.

Pennington says that to avoid similar situations of oversupply in the future, governments may want to plan a range of responses for the next flu pandemic, based on a virus' severity. But such evaluations of deadliness of an emerging disease are much harder to carry out than one would hope — if not impossible. And delaying action in response to an unpredictable new virus could potentially mean an increase in preventable deaths. "I think all countries recognize the desirability of flexibility in implementing pandemic plans. But exercising flexibility is really hard especially when large and complicated events like pandemics are often very confusing, and the expectations of populations can swing dramatically over short periods of time," says Fukuda.

The current glut of vaccines in rich nations may at least prove useful to the 95 countries in the developing world that have no access to vaccines, 86 of which have written to the WHO requesting help obtaining supplies. The WHO already has 200 million doses for such countries, and the first doses of that stockpile arrived in Mongolia and Azerbaijan this month. These doses will be supplemented by bilateral deals: France, for example, plans to sell 2 million vaccine doses at cost to Egypt and 300,000 to Qatar, according to a report in the Parisien newspaper.

It appears that even in developing nations, however, the need for vaccines is not overwhelming. Despite fears that H1N1 would hit developing nations hardest, the pandemic is unfolding in those countries "in a similar pattern" to that in the developed world, says Fukuda — which is to say with relatively few deaths. In fact, some developing countries, particularly in West Africa, are reporting lower rates of infection than in the developed world. "Based on the current H1N1 strain, there are higher health priorities in the developing world," says Sandra Mounier-Jack of the Communicable Diseases Policy Group at the London School of Hygiene and Tropical Medicine, citing illnesses such as HIV, tuberculosis and malaria.

Mounier-Jack's comment echoes the basic question that Wodarg and other critics of the WHO are aiming to pose at Tuesday's hearing: Given that other health problems were more deserving of the billions of dollars spent tackling H1N1, how do the WHO and governments explain their decisions?

The U.S. government, for its part, still wants to vaccinate as many people as possible against H1N1. Although it has indeed been a mild flu season so far, says Jeff Dimond, a spokesperson at the Centers for Disease Control and Prevention, "our message right now is that people should get vaccinated. We are aware that a third wave of infections is possible, so we aren't making any decision yet on whether we will use our full capacity of 251 million doses."

16. At UC Davis MIND Institute, learning can be child's play for autistic

By April Dembosky
Special to The Sacramento Bee
Published: Sunday, Jan. 24, 2010

Most parents never think they'll have to learn how to play with their own children.

But if a toddler is diagnosed with autism, moms and dads can spend years with the child and a therapist, drawing with crayons and playing hide and seek. Research is proving that as parents color and stack building blocks with their kids, they are subtly teaching them to overcome cognitive, language and social delays.

"When we first came in, he wasn't talking, he didn't respond to his name, he wasn't making eye contact," said Cindy Jensen of her son Cooper, who's now almost 3.

After more than a year of specialized play therapy through the UC Davis MIND Institute in Sacramento, Cooper is speaking in seven-word sentences, learning to take turns and initiating pretend play. "It's a lot of training, but it's worth it," Jensen said.

Treatments for autism are geared to children between 3 and 5 years old. Researchers said there is growing urgency – even a sense of obligation – to develop effective intervention for much younger children.

New diagnostic tools can identify autism in kids as young as 12 months, and prevalence of the disorder is reaching record numbers. The federal Centers for Disease Control and Prevention reports one in every 110 children has an autism spectrum disorder.

Researchers at the MIND Institute are conducting a study adapting a specialized program, the Early Start Denver Model, for children to begin as young as 1 year old. The model focuses on building relationships with children and teaching skills through play: 20 hours every week with a therapist, and at least five hours a week with parents.

"What the child learns is that it's more fun to do things with others, rather than alone," said Sally Rogers, professor of psychiatry and behavioral sciences at the MIND Institute. "Kids with autism enjoy playing with others, they enjoy being tickled. They just don't know how to initiate."

Rogers co-authored a previous study, recently published in the journal Pediatrics, which found that autistic children who received this therapy showed significant improvement in IQ, language, motor skills and adaptive behavior compared to a control group of autistic children who did not receive the same therapy.

Some kids improved so much that they no longer met the diagnostic criteria for autism, classified instead as having a less-severe developmental disorder.

"We're trying to identify these kiddos early so they can learn in a typical way," Rogers said.

The coaching channels an autistic child's learning pattern toward eye contact and verbal communication, before autistic developmental characteristics become entrenched.

"This is unique in that parents learn the model," said Vanessa Avila-Pons, a therapist and team leader for the early intervention study at the MIND Institute. Avila-Pons demonstrates play techniques and offers guidance while parents play with their children.

During a recent session, Carrie King played with her 2-year old son Elijah. King held a plastic toy gun for a game of helicopter.

"Go!" Elijah said. King pushed a button, sending a small plastic disc spinning through the air and onto the table. Elijah was delighted. After a few more times, she handed him the toy. He fiddled with it but couldn't get the same result. He looked up; King reached out her hands, palms up.

"That's good she responded," Rogers said, watching from the other side of a two-way mirror. "For these little ones, eye contact is hard. A lot of parents wait for a word."

Kids don't know that eye contact and gestures are communication tools, Rogers said. By giving Elijah the toy without showing him how to work it, King forced him to ask for help. By holding out her hands, she reinforced Elijah's request for help through eye contact. King had introduced to him a new gesture that means "help" or "give me."

"Push," King said, "push!" The disc flew. King opened her eyes wide and let out a "Wow!"

Rogers nodded.

"She's using simple one-word phrases, because that's where he's at," she said. "The use of the word 'wow,' shows kids that words are not just for labels or requests. It's an emotional word. 'Wow' is social. We want kids to know that words are used in a lot of different ways."

Elijah and King will finish their initial 12-week coaching this week, then move to the 25 hours of weekly therapy over the next two years. King said she was relieved when she enrolled Elijah in the study, soon after he was diagnosed at 18 months.

"It's so great to get a diagnosis, because your life can start," she said.

Four years ago, when her older son Josiah was 2 years old and diagnosed with autism, her reaction was more emotional.

"I remember feeling, 'I don't know my child,' " she said, taking a deep breath.

"When you have a baby, and it has all its toes, and it's apparent to everyone that it's normal, you start to dream for the child," she said, raising a tissue to the corner of her eye. "But when you get a diagnosis with autism, you have to let go of all those dreams. … You don't know if the child will talk, get a job, have a friend. You have to let go of everything."

Now, every time her sons learn a new skill, she said she's filled with pride. "But you still cry."

Josiah and Elijah are part of another autism study at the MIND Institute looking at siblings of children with autism, their risk factors for developing the disorder, and early symptoms among infants.

King said she supports this research so families with autistic children get better care than is available now.

"Nothing will change unless they have documented information over time," she said. "This program is so important. Play is a powerful learning tool."

King looked at Elijah, crayons in hand and beaming. "You see the child become a child."

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