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December 13, 2002

PUBLIC HEALTH

* The Man Behind The Vaccine Mystery

* Mercury in Vaccines: An Interview With Michael E. Pichichero, MD

AWARENESS

* This Marino Miracle Is A Victory Over Autism

TREATMENT

* Galantamine May Be Effective In Treating Autistic Disorder

* Supplement Echinacea Stirs Up The Immune System

EDUCATION

* Parents Express Concern Needs Not Met For Special Students in Illinois

LETTER

* Don't Overlook Fragile X

PUBLIC HEALTH

The Man Behind The Vaccine Mystery

It's been a mystery in Washington for weeks. Just before President Bush signed the homeland security bill into law an unknown member of Congress inserted a provision into the legislation that blocks lawsuits against the maker of a controversial vaccine preservative called "thimerosal," used in vaccines that are given to children.

Drug giant Eli Lilly and Company makes thimerosal. It's the mercury in the preservative that many parents say causes autism in thousands of children – like Mary Kate Kilpatrick.

Asked if she thinks her daughter is a victim of thimerosal, Mary Kate's mother, Kathy Kilpatrick, says, "I think autism is mercury poisoning."

But nobody in Congress would admit to adding the provision, reports CBS News Correspondent Jim Acosta – until now.

House Majority Leader Dick Armey tells CBS News he did it to keep vaccine-makers from going out of business under the weight of mounting lawsuits.

"I did it and I'm proud of it," says Armey, R-Texas.

"It's a matter of national security," Armey says. "We need their vaccines if the country is attacked with germ weapons."

Rep. Dan Burton, R-Ind., isn't buying it. The grandfather of an autistic child, Burton says Armey slipped the provision in at the last minute, too late for debate.

"And I said, 'Who told you to put it in?'" He said, 'No, they asked me to do it at the White House.'"

Critics say the Bush family and the administration have too many ties to Eli Lilly. There's President Bush's father, who sat on the company's board in the 1970's; White House budget director Mitch Daniels, once an Eli Lilly executive; and Eli Lilly CEO Sidney Taurel, who serves on the president's homeland security advisory council.

Officials at the drug giant insist they did nothing wrong. "No one, not our CEO, not myself, not anyone who works with me asked the White House to insert this legislation," said Eli Lilly spokeswoman Debra Steelman.

But Kathy Kilpatrick and her husband Michael argue that the thimerosal provision is not designed to protect the nation, but rather to protect Eli Lilly.

Asked what he'd say to a congressman who came forward and admitted he was responsible for inserting the provision, Michael Kilpatrick says, "I would ask him if he knew he was protecting mercury being shot into our kids."

Kathy Kilpatrick asks, "Why would anyone want to save Eli Lilly on our children's backs?"

Because Armey is retiring at the end of the year, some say the outgoing majority leader is the perfect fall guy to take the heat and shield the White House from embarrassment.

It's a claim both the White house and Armey deny.

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Mercury in Vaccines: An Interview With Michael E. Pichichero, MD

Dec. 3, 2002 _ Editor's Note (Medscape): There has been much debate about the safety of thimerosal, which is used as a preservative in childhood vaccines and also in adult influenza vaccines. Although studies generally have shown that mercury levels after vaccination are not a problem, the American Academy of Pediatrics (AAP) successfully lobbied to have thimerosal removed from all childhood vaccines.

The first detailed analysis of blood, stool, and urine mercury levels in 61 infants who received vaccines containing thimerosal, published in the Nov. 30 issue of The Lancet, indicates that blood levels of mercury in children are well below current safety limits established by the Environmental Protection Agency (EPA). Surprisingly, the elimination of mercury in these children was much faster than predicted from studies of mercury toxicity from seafood.

Based in part on these findings, the World Health Organization (WHO) put forth guidelines saying that thimerosal is safe and should continue to be used.

To clarify these findings and their implications, Medscape's Laurie Barclay interviews lead author and lead investigator of The Lancet article, Michael E. Pichichero, MD, a professor of microbiology, immunology, pediatrics, and medicine at the University of Rochester Medical Center in New York.

Medscape: Please summarize your Lancet study results and their implications for the safety of vaccines containing thimerosal. Dr.

Pichichero: We looked at the [blood] level of mercury in children who received thimerosal-containing vaccines. Not a single child had a blood mercury level approaching the lower safety limit established by the EPA. Former predictions of possible pediatric problems with mercury in vaccines, which led to removal of thimerosal from U.S. vaccines, were based on the notion that metabolism of ethyl mercury in the vaccine was the same as that of methyl mercury in fish.

But our study showed that elimination of ethyl mercury from the vaccine was about six times as fast as that of methyl mercury. The rapid metabolism probably accounts for the very low blood levels in the children we studied.

Medscape: Could blood levels of mercury be misleading in that blood levels could be low even while mercury is accumulating in bone or in organs? Dr. Pichichero: We accounted for virtually all the mercury contained in the vaccine in the stool of these children, with not much excretion in the urine. So there really is no evidence that there is any mercury unaccounted for which could be accumulating in bone or elsewhere, although this study was not a toxicity study and did not examine this issue directly.

Medscape: Although these results appear to be reassuring, are there any study limitations to consider in interpreting the findings? Dr.

Pichichero: This was a small study of 61 children: 20 two-month-olds who got thimerosal, 20 six-month-olds who got thimerosal, and 21 controls.

Because we didn't anticipate the rapid clearance of ethyl mercury with half-life of only six to seven days, we predicted the sampling times on the basis of an assumed 45-day half-life.

Medscape: On what basis did the EPA set public safety limits for mercury levels? Dr. Pichichero: The EPA levels were largely based on studies from the Faroe Islands which looked at the toxicity of methyl mercury ingestion from whale blubber. Mild neurodevelopmental problems occurred at blood levels of 200 to 300 ng/mL, and the mildest detectable neurodevelopmental toxicity occurred at blood levels of 58 ng/mL. So the EPA decided they'd add in a safety factor of 10, and they reasoned that levels should not exceed 5.8 ng/mL to be totally safe. In our study, most children had levels of 1 to 2 ng/mL; two had levels of 2-3 ng/mL, and one had a level of 4 ng/mL. No child approached the EPA safety limit.

Medscape: Do you think that the Faroe Islands studies form an adequate basis on which the EPA can determine safe blood levels as they pertain to infants who receive vaccines containing thimerosal? Dr. Pichichero: Actually, it's not an adequate basis because the situations are not strictly comparable. First of all, the Faroe Islands study looked at levels of mercury in fetal cord blood when mothers ingested mercury from whale blubber. If anything, the fetus has been shown in human studies to be more susceptible to the toxic effects of mercury than are infants, because mercury easily penetrates into the fetal brain and kidneys and causes damage.

The other issue is that the Faroe Islands study looked at methyl mercury exposure, but thimerosal contains ethyl mercury. The FDA [Food and Drug Administration] assumed that metabolism of these two organic forms of mercury was closely correlated, but this was not validated by our study. We now know that the two forms are metabolized and eliminated differently. But our data are very reassuring in that the metabolism of ethyl mercury appears to be six times faster than that of methyl mercury.

An editorial accompanying the Lancet paper suggests that another study will soon be published comparing the effects of ethyl and methyl mercury. But from a toxicity point of view, once mercury is freed from its organic bonds, mercury is mercury, and it's the free form that enters the brain and kidneys and can cause damage. Our study did not examine toxicity, but we measured blood levels of free mercury, not of ethyl mercury.

Medscape: Why did the AAP urge vaccine manufacturers to remove thimerosal from U.S. vaccines? Do you think that this recommendation should be changed or updated? Dr. Pichichero: It's very reassuring for America's children that the hypothetical concerns which led to thimerosal removal were not validated by our study. The AAP and the FDA are not likely to reverse their decision based on our findings, now that thimerosal has been replaced with other preservatives.

Although this drove up the cost of vaccines, we as a wealthy nation have absorbed this cost. But the FDA and the AAP should be very pleased with our findings, which speak to the millions of children who have already received vaccines containing thimerosal. Our findings were also pivotal in the WHO's recommendation that thimerosal will remain in all vaccines provided by them to other countries.

Medscape: What are the advantages of using thimerosal in vaccines? Dr.

Pichichero: Cost is a major issue. If you don't use preservatives at all, you have to dispense vaccine in single-dose vials, which is not only more expensive but which may lead to more errors in administration. In underdeveloped countries where millions of children die of whooping cough, tetanus and measles, switching to a thimerosal-free vaccine would raise the price so high that millions of children would not be vaccinated.

The potential toxicity of using newer preservatives, as we now do in the U.S., is unknown, so we're trading the very small, known risk of thimerosal for an unknown one. The new preservatives in U.S. vaccines are presumed to be safe, but I'm not an expert on vaccine preservatives, and I don't know the extent of background research supporting this presumption.

Medscape: Is any additional research planned to clarify safety issues for thimerosal? Dr. Pichichero: We are collaborating with a laboratory in Seattle to look at nonhuman primate models to study possible mercury accumulation and other potential toxicity of thimerosal in vaccines. We're also doing a large follow-up in Buenos Aires, Argentina, in which we'll more carefully examine and quantitate these findings in larger numbers of children.

Medscape: Please comment on the provision in the Homeland Security Bill that protects pharmaceutical manufacturers from lawsuits related to adverse effects of childhood vaccines. Dr. Pichichero: The three major manufacturers of thimerosal-containing vaccines are GlaxoSmithKline, Aventis-Pasteur, and Wyeth. The Childhood Vaccine Protection Act is a long-standing piece of legislation which protects the pharmaceutical manufacturers against lawsuits involving vaccines recommended by the government. This legislation came into effect about a decade ago because all the lawsuits led to vaccine shortages. I'm not aware of any specific provisions in the Homeland Security Act dealing with this issue, but I haven't studied it specifically.

Lancet. 2002;360:1711-1712, 1737-1741

Reviewed by Gary D. Vogin, MD

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AWARENESS

This Marino Miracle Is A Victory Over Autism

New York -- Dan Marino sat a turkey platter, mashed potatoes and steak plate away at the Thanksgiving dinner table Thursday night. Who better to spend a football Turkey Day with than the man with the golden arm? But Dan wasn't the star of this table. In fact, his passing records, the touchdowns, the wins... they meant very little on this night. Because sitting at his right elbow was a living, breathing miracle.

Dan's son Mike doesn't seem any different from any other adolescent youth. He plays on the school football and basketball teams, regularly pulls in A's and B's and has made an art out of teaming up with his brother Joey to needle their theatrically talented older brother Danny.

Mikey is about as normal a 14-year-old boy as there is. But it's his normalcy that's the miracle.

Mike Marino had autism as a young child. Mike Marino appears to have beaten it -- completely! Not a sign remains. Yes, that would qualify as a miracle.

I’ll usually don't bring it up much because I get this really cold feeling when I think about how I had autism," said Mikey, one of six Marino kids. "I think about how I am now and how I was then, and it's just too weird for me.

"I won't say I have been cured because you can't really be cured of autism. But I have overcome it. That's what you can do, you can overcome it. I don't notice it at all anymore."

Autism interferes with the normal development of the brain in the areas of reasoning, social interaction and communication skills. Children and adults with autism typically have deficiencies in verbal and non-verbal communication, social interaction and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world.

It is conservatively estimated that nearly 400,000 people in the United States have some form of autism -- the third most common developmental disability. But the majority of the public, including many professionals in the medical, educational and vocational fields, remain unaware of how autism affects people.

My mouth drops as young Mikey Marino explains what it's like to be one those mysterious people stuck in a world that seems so unexplainable.

"The only thing I really remember about having autism was wanting to say something and not being able to do it," he said. "It's pretty weird to explain. It's like you are a perfectly normal person on the inside, you know what you want to do, but you just can't do it. You know you want to say something, pick up something or do something, but you are just not able to do it."

It's well known the Marinos had a child with autism because of the prolific charity work they contribute to the fight against it. But the fact Dan and wife Claire have seen their child beat the unbeatable is hardly known. The issue is rarely broached within the confines of their home because, well, it's really no longer an issue.

"Some of my friends have come up to me and said, 'We hear you have a brother who has autism,'" Mike says with a proud chuckle. "When I tell them it's not my brother it's me, they are like, 'No way.' They know that autistic people have problems saying things, but I guess I'm not one of those people anymore."

Mike's father might have been blessed with the golden arm, but Mike's story is inscribed in platinum ink. The improbable comeback story of their lives began when Michael was an infant.

"At first, we just thought he was such a well-behaved baby because he slept great, he didn't really cry, but then we began to realize something wasn't normal about it all," said Mikey's dad. "He wouldn't talk, he didn't really have any social dealings with other kids or his brother. He would just sit up in his crib. So we had him tested, and we learned that he was autistic.

"It was so difficult on me and Claire, because the first thing you do is think about what you did wrong for something to affect your family like this. But then after you come to terms with it, you have to learn as much about it as possible and then go attack it."

In order to attack it, Dan and Claire began a foundation to assist children with learning disabilities. That foundation then led to the Dan Marino Center in South Florida, where they actually bring in an average of 3,500 children per month for testing and treatment for a variety of disabilities.

"We were fortunate we could afford to bring in specialists in the house and we brought people in to help him every day," said Dan. "We had him work with occupational therapists, physical therapists, one-on-one teaching. We had the resources. That's where the idea for the center came about. It's a place where people who may not have the same resources can bring their children to get diagnosed and treated."

Marino sought a reason for Michael's plight, and maybe this is it. Had Mike not suffered from the disability, the Dan Marino Center might never have come to fruition.

"My mom told me that she and my dad made that whole Dan Marino Center because of me," said Mike. "That's really cool to hear."

When Mikey was 4, the Marinos began to see glimmers of advancement. Soon after, his progress began to accelerate, and the hope that their boy just might be able to break began to illuminate through the darkness.

"By about third grade we were able to get him into some mainstream classes in school," said Dan. "Eventually, he just progressed to the point where he was completely mainstreamed. Now, we really don't bring it up anymore because it's not even an issue in his life. He's as normal a kid as you'll meet.

"Forget anything I ever did on the field, this is the most incredible thing I have ever been around in my life. My kids are all really incredible."

Michael says he was unaware of his situation for years until his parents informed him of his mysterious past. He now remembers the feeling but has blocked most of it from his memory bank.

"I had an assessment testing when I was really young, and it was noticeable that I had autism," he said. "Then I had another test about eight years later, and the doctor said it was the highest improvement he had ever seen in those tests. I didn't really remember it until I was about 9 years old, I think it was, and my parents talked to me about it. It was kind of weird to hear and to think about. We don't even talk about it anymore."

As dinner winds down, Claire gives a personal one-on-one talk to each of her six children (two were adopted from orphanages in China) to let them know how thankful she is for them. Perhaps the biggest thanks is that when she talks to Mikey, she talks to a young man no different than the rest of the Marino clan.

"I know it's Thanksgiving, so I guess it's the appropriate time to be thankful but I'm always thankful," Mike said. "I really was blessed. To hear that I was one of the most remarkable cases of overcoming autism is really cool to know. I'd love the chance to help out other people like me. I really appreciate how blessed I am."

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TREATMENT

Galantamine May Be Effective In Treating Autistic Disorder

Editor (BMJ): Wilcock et al report galantamine to be an effective and well tolerated drug in Alzheimer's disease.1 The mechanisms of autistic disorders are not completely understood. At least one kind of autism (Heller's dementia) is clinically quite similar to Alzheimer's disease.

No specific drugs seem to improve autism significantly. Desipramine, dextroamphetamine, clonidine, neuroleptics, and methylphenidate are reported to be only slightly effective but also to have possible severe adverse effects.2-4 We conducted a placebo controlled, double blind crossover randomised controlled trial investigating the efficacy of galantamine in autistic disorders.

The participants were 20 boys attending an outpatient clinic (mean age 7.4 (SD 3.2) years; mean intelligence quotient (IQ) 68 (11) on the Leiter international performance scale of the revised Wechsler intelligence scale for children). They were without medical or neurological illnesses, had autistic disorder diagnosed by ICD-10 criteria, had been unsuccessfully treated with methylphenidate, clonidine, desipramine, and neuroleptics for more than six weeks, and had not received drug treatment for at least two weeks. Written informed consent was obtained. Participants were included in the study if their irritability, motor activity, eye contact, and expressive language (maximum 10 word vocabulary) were inadequate for their developmental level.

When parent and teacher scores were combined, mean scores were slightly lower during treatment with galantamine than during treatment with placebo for irritability classified by ratings of the aberrant behaviour checklist5 (galantamine 11.5 (7.6) v placebo 15.1 (5.4), P=0.039), hyperactivity (17.2 (12.8) v 21.7 (15.4), P=0.038), inadequate eye contact (placebo 7.6 (3.2) v 8.4 (5.2), P=0.049), and inappropriate speech (4.7

(3.1) v 6.2 (2.4), P=0.045).

Clinicians' scores of videotaped sessions using the modified children's psychiatric rating scale for autism were not significantly different between galantamine and placebo.

None of the subjects seemed to have headaches or stomach aches, although the reporting of such side effects was limited by participants' expressive language and social skills.

Galantamine seems to be not only effective in treating Alzheimer's disease but may also be also moderately effective in the short term treatment of irritability in children with autistic disorder.

Helmut Niederhofer, child and adolescent psychiatrist.

Regional Hospital of Bolzano, Department of Paediatrics, Via L Boehler, 5, I-39100 Bolzano, Italy helmut.niederhofer@uibk.ac.at W Staffen, neurologist. A Mair, neurologist. Christian Doppler Klinik, Department of Neurology, Ignaz-Harrer Strasse 79, A-5020 Salzburg, Austria

1. Wilcock G, Lilienfeld S, Gaens E. Efficacy and safety of galantamine in

patients with mild to moderate Alzheimer`s disease: multicentre randomised controlled trial. BMJ 2000; 321: 1445[Abstract/Free Full Text].

2. Campbell M, Fish B, David R, Shapiro T, Collins P, Koh C. Response to

trijodothyronine and dextroamphetamine: a study of preschool schizophrenic children. J Autism Child Schizophr 1972; 2: 943-955.

3. Campbell M, Adams P, Perry R, Speneer RK, Overall JE. Tardive and

withdrawal dyskinesia in autistic children: a prospective study. Psychopharmacol Bull 1985; 24: 251-255.

4. Birmaher B, Quintana H, Greenhill LL. Methylphenidate treatment of

hyperactive autistic children. J Am Acad Child Adolesc Psychiatry 1988; 27: 248-251[ISI][Medline].

5. Amman MG, Singh NN, Stewart AW, Field CJ. Psychometric characteristics

of the aberrant behavior checklist. Am J Ment Def 1985; 99: 492-502.

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Supplement Echinacea Stirs Up The Immune System

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Sometime in the late 19th century, both Europeans and North Americans realized that the herb echinacea was a medicinal gift from nature. In 1919, noted anthropologist Melvin Gilmore remarked in a study of the Plains Indians that "echinacea seems to have been used as a remedy for more ailments than any other plant." A member of the sunflower family, echinacea remains a popular herb. Nine species are found in North America, but only three (E. pallida, E. angustifolia and E. purpurea) have been found to have healing properties.

Uses: Echinacea's roots, leaves and flowers were used by Indians for bee stings and snake bites. Contemporary use of the herb has focused on its ability to stimulate the immune system.

Dose: In tablet form, typically 1,000 milligrams a day.

Precautions: Echinacea could interfere with drugs used to suppress the immune system, such as those used by people who have had organ transplants. People with HIV also should avoid the herb because stimulating the immune system may stimulate the virus. People with lupus, in which the immune system doesn't function properly, shouldn't take echinacea because stimulating the immune system could aggravate the condition. Allergic reactions to echinacea are possible, especially among people with ragweed allergies.

Research: Studies of echinacea's effects on the common cold have been mixed. That could be because preparations vary widely, and researchers don't know which species, and which parts of the plant, are superior. A government study is addressing that question. Another study is examining whether echinacea given to children ages 2 to 11 shortens the duration of upper respiratory infections and prevents bacterial infections.

Dietary supplement makers are not required by the U.S. government to demonstrate that their products are safe or effective. Ask your health-care provider for advice on selecting a brand.

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EDUCATION

Parents Express Concern Needs Not Met For Special Students in Illinois

St. Charles — Some parents of children with special needs in area school districts are concerned those needs are not being met.

Sherry Colgrove and Deborah Buelow, principal special education consultants for the state board of education, heard those concerns in a Wednesday forum.

The state board of education is conducting a comprehensive compliance review of the districts that comprise the Mid-Valley Co-op, including Batavia, Geneva, St. Charles, Kaneland and Burlington school districts.

In a group that filled the Mades-Johnstone school auditorium, parents expressed concerns about their children being bounced between schools, not receiving the same services as general education students and being isolated from other children.

"My son has been in five different schools in five years," one mother said. "Every year he's been moved farther away. He's never been in the same school two years in a row."

Some parents were concerned that schools are placing priority on accommodating growth, while special education concerns take a backseat.

"We are the leftovers, and the schools are like, 'where can we throw them?'" said Faith Whitwell, a Burlington resident whose son has autism. "The schools aren't prepared. They're not even preparing the schools they're sending the kids to."

Other parents said their children were punished when educators should have been more understanding of the children's behavior.

"The principals and teachers need more support," said one mother. "My son was suspended for acting like a kid with autism. I call it 'suspension without intervention.' I'm at a loss."

Parents also said their children were not offered the same opportunities that were available to general education students.

"My son was put in the most restrictive environment," said one mother. "He never got to be with other kids, or have art, music or lunch with the other kids. We fought it all year long, and the board of education said 'case closed.' "You know what the best thing is?" she asked. "We moved. I know so many parents who have moved because we can't fight the system."

Another mother echoed that statement, saying her daughter, who has down syndrome, was suspended twice for behavioral problems, and that once districts send students to the co-op, the districts relinquish responsibility.

"The districts that house Mid-Valley take no ownership of the program," she said.

Some parents praised districts for their services.

"Geneva has been phenomenal with us," said one mother, whose child was included with general education students. "It was an administration that said, 'inclusion works.'"

Another parent agreed.

"Each child has different needs," the father said. "Our experience with Dist. 304 has been phenomenal, and that's not an overstatement."

A few parents said they did not feel totally included in making decisions about their children's education.

"Often, it was indicated to me that my input wasn't the authoritative input," said Judy Althoff, a Geneva resident whose son went to school there for 16 years. "As a parent, I thought I was the authority because I'm with him all the time and I know him best."

Colgrove responded that schools have a responsibility to provide services in the way they see fit, and though not everyone handles issues the same way, parental input weighs the same as education professionals.

Many of the parents' complaints centered on the Mid-Valley Co-op. Now that the co-op is under the leadership of new director Rita Stevenson, parents can expect positive changes, Colgrove said.

The compliance review, which is conducted every six years, includes student file reviews, staff interviews, peer monitors, a review of compliance data, parent surveys and data analysis.

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LETTER

Don't Overlook Fragile X

We may not yet know all of the causes of autism, but we do know about fragile X and can do something about it.

- Steve McKee Vice President, National Fragile X Foundation and Chair,

Awareness Committee, Parent of a child with autism and fragile X syndrome

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