Just in Case

Issue 115
By Peggy O'Mara 

Mothering has covered vaccinations as a freedom-of-conscience issue since 1979. Early on, our coverage raised questions about vaccines because we wanted parents to have true informed consent. In the last ten years, however, the stakes have changed. Parallel to the rise in the number and combinations of required infant vaccines has also been a rise not only in prescriptions for Ritalin but also in the number of cases of regressive autism. Between new and combination vaccines, an infant could receive nine vaccines at one visit.

Autism is part of a spectrum of disorders, of which it is the most severe. Other disorders of this spectrum include ADD, ADHD, dyslexia, Asperger's syndrome, hyperlaxia, and PDD. Speech and learning delays can be part of this spectrum and are often its first signal. Autism has exploded during the last ten years. Previously found in 1 out of every 10,000 children, it's now found in 1 in 250 children in the US and 1 in 86 in the UK. In California the autism rate has increased 273 percent since 1987. Many consider these rates to be epidemic. On June 19 of this year, Amy Morrison of our staff and I attended a congressional hearing on "The Status of Research into Vaccine Safety and Autism." Since 1999, the Government Reform Committee has held ten hearings on vaccine safety and vaccine policy. The June hearing took testimony from five scientists and five representatives of the Health and Human Services Centers for Disease Control and Prevention. The scientists have done research related to the toxicity of metals as well as the possible association between vaccines and autism. One theory holds that there is a relationship between the MMR vaccine, which does not contain thimerosal, and autistic enterocolitis. Another suggests a possible link between the use of mercury-containing thimerosal in multiple vaccines and late- onset autism.

Vera Stejskal, PhD, associate professor of immunology at the University of Stockholm, has worked with mercury toxicity for 20 years. Her research shows that thimerosal is a strong allergen. Worldwide, it is more allergenic than nickel. In fact, it is the number-one childhood allergen. About 10 to 30 percent of children are allergic to it.

Andrew Wakefield, MD, and three other physicians at the hearing presented evidence for a correlation between the MMR vaccine and autism. Wakefield's research has been confirmed by nearly a dozen controlled trials worldwide. In 1997 he and several other researchers published a paper, in the British medical journal The Lancet, on a possible link between Crohn's disease and the measles vaccine. After its publication, parents began asking Wakefield to examine their autistic children. To their surprise, he and his colleagues found measles in the guts of these autistic children, who had never had the disease and whose only known exposure to measles was through the MMR vaccine. Wakefield developed a hypothesis that certain susceptible children suffered from a new form of bowel disease, possibly triggered by the MMR vaccine and linked to autism. He recommended that parents should have the choice of single measles, mumps, and rubella vaccines. In Japan, after an outbreak of vaccine-related meningitis, MMR was completely withdrawn in favor of single shots. In Canada it is administered in a different form because of related concerns. In October 2001, the Institute of Medicine Immunization Safety Review Committee, commissioned by the CDC, concluded "that although the hypothesis that exposure to thimerosal-containing vaccines could be associated with neurodevelopmental disorders is not established...the hypothesis is biologically plausible." This conclusion was based on data from the Vaccine Safety Datalink (VSD) project, developed in 1990 by the CDC. At the June hearing, CDC officials admitted the existence of a previous, undisclosed CDC study that does, in fact, establish a connection between thimerosal and autism. The existence of this secret study was first revealed through a Freedom of Information request made to the CDC by the parent advocacy group SAFEMINDs.

The previously undisclosed CDC study was discussed at a two-day meeting, Scientific Review of the Vaccine Safety Datalink Information, that was held on June 7 and 8, 2000, at the Simsonwood Retreat Center in Georgia. At the meeting, the results of a study entitled "Risk of Neurologic and Renal Impairment Associated with Thimerosal-containing Vaccines," authored by Thomas Verstraeten, Robert Davis, Frank DeStefano, and the VSD team of the CDC, were presented and discussed. In this study, the automated data from two health maintenance organizations was prospectively collected for vaccine safety studies. The study concluded, "This analysis suggests that in our study population, the risks of tics, ADD, language and speech delays, and developmental delays in general may be increased by exposures to mercury from thimerosal containing vaccines during the first six months of life." The study showed 3,114 cases of neurological developmental disabilities out of 109,993 cases. The most prevalent disability was developmental speech and language delay, a precursor of autism. There were 127 cases of autism and 374 cases of ADD. The tragedy is that this study was kept secret, and vaccines with thimerosal continued to be administered to infants for at least a year after the study was published. Roger Bernier, PhD, MPH, associate director for science of the CDC's National Immunization Program, testified at the hearing that "In mid-1999, the United States Public Health Service agencies, including NIH, FDA, HRSA and CDC, took action, working collaboratively with the American Academy of Pediatrics, the American Academy of Family Physicians and the vaccine manufacturers, to begin removing thimerosal preservative from the vaccine supply.... As a result of this action, all manufacturers are now producing only vaccines that are free of thimerosal or contain only trace amounts, as a preservative for routine infant immunization." Congressman Dan Burton (R-IN), chair of the Committee on Government Reform, berated the CDC representatives for not moving more quickly to remove thimerosal from vaccines and asked if "the scientific community and health agencies delayed in taking it off the market because of undue influence being exerted on our agencies by pharmaceutical companies." He noted CDC internal memos from as far back as 1992 expressing concerns about thimerosal. Based on European studies, thimerosal was removed from childhood vaccines in Sweden as early as 1998. Burton further criticized the CDC for not making the VSD data available to independent researchers. Henry Waxman (D-CA), ranking Democrat on the House Reform Committee, claimed that there were issues of privacy in releasing the data, but researchers use only raw data without identifiable markers. CDC spokespeople testified at the hearing that the VSD data was now available for independent research and could be obtained by contacting the CDC.

I was perhaps most affected that day by something that happened after the hearing, on the way to the Metro, when the mother of an autistic son, Hayden Louis Goetz, approached Amy and me. He was born perfectly normal nine years ago, with an Apgar score of 9/9, and was vaccinated with hep B (thimerosal-containing) 12 hours after birth. Four weeks later, he was vaccinated a second time with hep B (also thimerosal-containing). At two months, he was vaccinated with whole-cell DTPH and had his first vaccine reaction. He now has the mental capacity of an 18 month old and is nonverbal and not toilet- trained. It took 39 months and 72 doctors before Hayden's injury was diagnosed as vaccine related. Tough luck, however. The Federal Circuit Court of Appeals ruled in 2001 that the "36-month statute of limitations was absolute," referring to the statute of limitations of the Vaccine Injury Compensation Program (VICP). The Goetz family will get no compensation from their government.

Hayden's family faces $30,000 a year in expenses for physical, occupational, speech, and behavior therapy, as well as medical expenses for MRIs, EEGs, allergy testing, IV infusions, supplements, dietary interventions, and other treatments. Because of limitations and restrictions that were not the original intent of the National Vaccine Injury Act that created the VICP, Mr. and Mrs. Goetz must bear a lifetime cost of caring for their beloved son of well over 1 million dollars.

Barely a month after the June 19 Government Reform Committee hearing revealed the previously undisclosed CDC study establishing a causal relationship between thimerosal and neurologic developmental disorders, legislation was introduced to reduce vaccine liability. Senate Bill 2053, cosponsored by Hilary Clinton (D-NY) and William Frist (R-TN), makes it illegal to bring a civil action against a vaccine administrator or manufacturer unless a person proves physical injury and has filed a petition in accordance with the statute of limitations of the VICP. The law further prohibits civil action by a parent or third party unless "the action is joined with a civil action brought by the person whose vaccine-related injury is the basis for the action."

Critics of the bill say that the legislation is an attempt to deflect the class-action suit filed in April by the Texas firm Waters and Kraus. The suit is the first known civil case to allege that the mercury-based preservative thimerosal, used until recently in over 30 childhood vaccines, has caused mercury poisoning in children. Many of the families involved in the class-action suit did not make a claim with the VICP because their child's vaccine injury was not diagnosed until after the statute of limitations had run out.

According to the National Vaccine Information Center, SB 2053 "would amend the Vaccine Injury Compensation Program (VICP) in a way that would benefit drug companies and shield them from liability. There are many provisions in the bill but the most problematic one will stop the ability of a vaccine injury victim to bring a lawsuit in civil court."

Senate Bill 2053 further attempts to appropriate surplus funds in the Vaccine Trust Fund. This money is earmarked for compensation to parents. The bill reads, "Not later than one year after the date of enactment of this Act, the Secretary of Health and Human Services shall submit recommendations regarding how to address the growing surplus in the Vaccine Trust Fund." It's the taxpayers' money that funds the VICP, a total of $800 million since the bill was enacted in 1986.

In contrast to SB 2053, the National Vaccine Injury Compensation Program Improvement Act of 2002, HR 3741, introduced in the House by Dan Burton and Henry Waxman, extends the statute of limitations for vaccine injury claims and ensures payment to lawyers who defend vaccine-injured children.

Manufacturers and physicians are already protected from liability by the National Vaccine Injury Act. However, doctors can be found liable if a patient gets a "vaccine-preventable" disease. In some places, physicians are actually compensated for vaccine compliance. In the UK, for example, physicians are compensated £2,865 a year for 90 percent vaccine compliance and nearly £955 for 70 percent compliance. In New Zealand, general practitioners are compensated per vaccine. Only the most independent and courageous doctors can afford to question vaccine safety. Most who do lose hospital privileges, professional standing, and, in some cases, their jobs. Economics may be what this all boils down to. While the profits of the Fortune 500 companies declined this year by 53 percent, the second deepest dive in profits the Fortune 500 has taken in 47 years, the top-ten US drugmakers increased profits by 33 percent. Their profits were eight times higher than all other Fortune 500 industries combined. Public Citizen's Congress Watch reported that drug companies attained these profits by hiking prescription prices, advertising medicine to consumers in unprecedented amounts, and spending less than the industry has suggested on research and development.

Vaccine revenues in the US are estimated at more than $1 billion a year, twice what they were in 1990. The cost to fully vaccinate a child has risen from $107 in 1986 to $367 in 1996, a 243 percent increase in just ten years. Merck is the second most profitable pharmaceutical company, netting $7.3 billion last year, which is more than the profits of all the Fortune 500 companies in the semiconductor, pipeline, food production, crude oil production, and hotel, casino, and resort industries combined. Merck is one of only four companies that manufacture childhood vaccines and is the only one that produces MMR and Varivax. The other three are Wyeth-Ayerst, GlaxoSmithKline, and Aventis Pasteur, the sole manufacturer of IPV. On the day of the hearing, the following headline appeared on the front page of the Washington Post, "Drug Firms among Big Donors at GOP Event." The chief corporate fund-raiser for the gala event was Robert Ingram of GlaxoSmithKline. The company gave at least $250,000. Pharmaceutical Research and Manufacturers of America, a trade group funded by the drug companies, also gave $250,000. Merck paid up to $50,000 to "sponsor" a table. The event was expected to net over $30 million. Every company that donated money to the GOP had business currently before Congress.

I can't help but contrast the $30 million paid in one day to influence public policy with the $30,000 the parents of Hayden Louis Goetz must pay every year out of their own pocket for damage caused to their son by a public policy that had risks the US medical establishment did not warn them about and does not take responsibility for.

Since 1940, the number of required childhood vaccines has risen from three doses of DPT to 40 doses of 12 different vaccines. No vaccine on the market has ever been evaluated by a prolonged double-blind study. It is considered unethical in the scientific community to deprive the citizens of a lifesaving vaccine, but ethical to experiment on them through its use. The CDC and FDA rely on a post-marketing evaluation system of physician reporting to monitor adverse vaccine reactions. Physicians are encouraged to report any adverse reactions to the Vaccine Adverse Events Reporting System (VAERS), but only a small percentage of them do so. In addition, many reactions are not recognized as vaccine-related until years after the initial insult.

One of the few tools available to the scientific community to evaluate vaccines is the Vaccine Safety Datalink project that Congressman Burton and the Committee on Government Reform are so upset about. The Government Reform Committee has been trying to obtain this data for independent analyses for over two years. They want the database open to the public immediately so that independent researchers can evaluate the data regarding vaccines and adverse effects. Many in the vaccine safety community have for years called for independent research to compare the acute and chronic health outcomes of children who have been vaccinated with those of children who have not. Dr. Bernier of the CDC admitted that there were trace amounts of thimerosal still in vaccines. I have downloaded a list of available vaccines and their thimerosal content (www.vaccine safety.edu/ thi-table.htm), and it shows that there is a thimerosal-free version available for every childhood vaccine, but tragically, parents are reporting difficulty getting them. While one doctor told me that she used only thimerosal-free vaccines in her practice and assumed that all other doctors did the same, another physician called to tell me that he had been unable to obtain thimerosal-free hep B vaccines for his own school-age children. In addition, parents are finding it nearly impossible to find monovalent vaccines-single doses of vaccines that are usually given in combination, such as the MMR.

The majority of parents of children with regressive autism believe that vaccines are responsible. They often do not question the importance of vaccines, but they do feel betrayed by their government. Five to eight times more boys than girls are autistic. In fact, 1 percent of boys are autistic-420,000 in the US. Their lifetime care will cost 3 to 4 trillion dollars. There are well over half a million autistic children in the US, yet the CDC budget for autism research is a little over $10,000,000. About twice as many Americans have AIDS, but the CDC budget for this research cash cow is $932,000,000, nearly ten times as much as the autism research budget. In 1997, the National Institutes of Health (NIH) spent $2.9 billion in AIDS research and less than a million on autism.

As Congressman Burton said, "The actions taken by HHS officials in the past-aggressively denying any possible connection between vaccines and autism, and waging an information campaign endorsing one conclusion on an issue where the science is still out-have significantly undermined public confidence in the career public service professionals who are charged with balancing the dual roles of assuring the safety of vaccines and increasing immunization rates." It is not anti-vaccine to be pro-vaccine safety. I encourage you to write to your representatives to ask them to support the Committee on Government Reform's efforts to secure access by independent researchers to the VSD and to ask their assurance that, as a parent, you will have access to thimerosal-free and monovalent vaccines. Demand that double-blind studies, the gold standard of drug testing, be required prior to vaccine licensure. The issues at stake here are infant safety, public trust, and freedom of conscience. In a democracy, we want our public agencies to protect us. Most often they do, but sometimes they are wrong. Sometimes overzealousness, greed, avarice, or fear of reprisal can affect human judgment. Sometimes people just make mistakes. I want to live in a society that admits its mistakes, makes reparation, and moves on. I object to a society in which I must be wary of public agencies I finance as a taxpayer. Join me in taking responsibility for our own health and that of our children, in requiring public officials and public institutions to be accountable for public policy, and in remembering that people in authority are not always right. For more information on the hearing, see www.house.gov/reform. For more information on the thimerosal class-action suit, call the Texas law firm Waters and Kraus at 800-226-9880.

Issue 155
By Peggy O'Mara 

Community is a popular buzzword. We hear about online communities and food communities. President Obama made community organizing a household word. We know that community is important, but what is it? How do we know when we have community?

Community literally means to be together with unity, to be one with unity. The form that community has taken, however, has evolved over time as we’ve moved from homogenous to more diverse societies.

Early definitions of community in Western Europe from the 1500s have to do with holding goods in common, and the first definition in the Oxford dictionary today includes “common ownership.”

Definitions from the 1700s were more secular; not only were communities organized around a religious faith, but also certain neighborhoods, districts, and countries qualified as communities.

We all have a sense of the communities we are part of—in the world, in our country, our local region, within our extended family, among our friends, in our immediate family, and finally with ourselves. In this age of high tech, community is more important than ever. While we connect with others online, being alone with our computer can be isolating and ultimately makes us crave the company of real people. In fact, high touch is the counterpoint to high tech.

I was listening to the radio game show Wait Wait
. . . Don’t Tell Me! some time ago, and the question was asked, “What number came first, one or two?” The answer was surprising: two. The number two came before the number one. This must mean that as humans we perceived ourselves as part of a dyad before we perceived of ourselves as individuals.

Community then is an intrinsic need of human beings. We need other people. In community we have uninhibited communication, mutual understanding, and common valuing. In community we experience intimacy.

In the days of our hunter-gatherer ancestors, all communication took place within one community. Now we are part of many. To get a perspective on how things have changed: We are preceded in time by 10 generations of industrialists, 100 generations of farmers, and 100,000 generations of hunter-gatherers. And in recent times, the pace of communication is accelerating.

According to Luc de Brabandere, author of The Forgotten Half of Change: Achieving Greater Creativity Through Changes in Perception (Dearborn Trade, 2005),

The first acceleration occurred when the agrarian world segued into the industrial world. The second and far more dramatic jump occurred when the industrial world transmuted into the digital world. While electricity and the telephone took some 50 years to reach 50 percent of American homes, e-mail and DVDs were adopted by most Americans within a mere ten years.

Another example of accelerated communication is the plight of the daily newspaper. In the last few years, the front page of the New York Times has become old news before it’s printed. We’ve already heard the news on the Internet before we see the morning paper. Some of us are afraid of this new technology, afraid that things are moving too fast—but the word technology simply means tool. Like any tool, technology can be used or abused. The good news is that because this digital technology facilitates more rapid communication it also creates more community.

We see this on our website, Mothering.com, 
where we have 135,000 members of our discussion boards, 1 million total threads and 13 million total posts. In fact, our online discussion boards are the second largest parenting forums on the entire Web. There has been an explosion of moms’ groups in the last ten years. When I was a new mom there were only two groups: La Leche League (LLL) and International Childbirth Education Association. Now there are Holistic Moms Network, National Association of Mothers’ Centers, International Moms Club, Mocha Moms, Moms-
Rising, Mothers Acting Up, the Mothers Movement Online, to name a few.

But before we consider reaching out to these or other organizations, we want to strengthen the root of community with others: that is, our relationship with ourselves. Looking for community is part of a circle that begins with and returns to us. It helps if we can cultivate some self-awareness.

It can be hard to remain self-aware when we are in the company of others. If that first community after ourselves is our immediate family, then I’m sure we all know how easy it can be to lose track of our own center when we are caring for others.

I often felt as a mother of young children that any communities outside of my family were almost more than I could handle, that I required all of my reserves for the unexpected things that kept happening in the life of my family. As a new mother, though, I needed outside communities. I longed to see my friends. Even when I was overwhelmed with babies, I wanted to talk to my friends on the phone.

I also cherished organizations like LLL, where I could see other parents doing what I was learning to do. I craved good models, so although it was hard to round everyone up to attend a conference, it was worth it, as it gave me sustenance for an entire year. Interestingly, many of my friends when I was a new mother were people I might not have met other-
wise. Our shared values made our other differences insignificant.

From the security of a new community, we can experiment with new ideas. When we are in a process of change—as when you first discovered Waldorf schools and were still contrasting them to other educational methods or perhaps when you first considered a homebirth—it can feel like we are entering an entirely new world, and we are. At these times we especially need community. Even those of us who have lots of friends or who feel just fine about our social lives may feel isolated when facing an unexpected problem or change in our lives and may seek an entirely new community to help support that life change.

Another way we support new life changes is to create a nourishing environment at home, to make our home a sanctuary, a place where we feel safe and can fall apart when necessary.

We also need house rules that allow for everyone to have private as well as community space. One of the things that people learned from the communes of the sixties was that even good community could be too much sometimes.

Many new centers, coffeehouses, and restaurants are popping up to serve the community with children. Natural Resources in San Francisco is one example of a retail, library, and meeting space for parents. In Manhattan, the Upper Breast Side is a boutique that offers breastfeeding resources and supplies. Mom’s Breastaurant is a portable tent that goes to outdoor conferences and events and provides a shaded and quiet place for moms and babies. In El Paso, Texas there’s a new café, the El Paso Baby Café, where moms can drop in for mother-to-mother support as well as professional breastfeeding advice.

Over the years, we’ve published articles on the international cohousing movement where families live in close proximity to one another, share meals, and other resources. We recently received an article about a couple that bought land and built a house along with his parents and her mom. They all have private wings of the house as well as shared common spaces. A friend told me that her house had recently been sold to two families, who would be sharing the house together.

One of our most popular articles ever in Mothering is “Finding Your Tribe” by Teresa Pitman, the story of a young mom who spends days with her friend. They cook together, clean together, and help each other with their children. On Mothering.com we have very popular Finding Your Tribe threads with “tribes” of online forum members who regularly meet for picnics, meetings, and get-togethers in their local areas.

So how do we find community? We don’t. We attract it. We find it where we are. We go deeper with people we are already with: neighbors, coworkers, other parents. How do we find time for community? We start where we are!  Here are four universal principles for communication recommended by anthropologist Angeles Arien: 

Show up.

Pay attention to what has heart and meaning.

Tell your truth without blame or judgment.

Do not be attached to outcome.

We hone our skills of communication because we need each other so much. We need community. If you’re feeling blue it’s for a good reason. Don’t turn against yourself in tough times. Visualize what it would look like if you felt part of a tribe, part of a community. Describe it to yourself. What is one community you want to know more about? What is one step you could take toward that one community? Break it down into small steps and take just one step.

How do I meet new people? First I imagine what it is that I would like to share. Next I have to make a plan to achieve this connection. Then I need to take the first step, whatever it is. And, finally I have to practice my new learning again and again, by getting together with my new community regularly—and pretty soon I will belong. I also have to be patient with myself when leaving a less supportive community, just allowing myself to start over again without making a big production about it.

We’ve been living in an age in which the individual has appeared to be more important than the collective. Current economic challenges underline just the opposite. But these times are just a reminder of what has always been: We need community regardless of the times. There is nothing wrong with us if we can’t go it alone. We’re not supposed to.

Though we can’t go it alone, we also do not want to give ourselves away. We want to look for communities that offer us respect and optimism. I love this quote from African-American poet Nikki Giovanni about good boundaries in community.

There is always something to do. There are hungry people to feed, naked people to clothe, sick people to comfort and make well. And while I don’t expect you to save the world, I do think it’s not asking too much for you to love those with whom you sleep, share the happiness of those whom you call friend, engage those among you who are visionary and remove from your life those who offer you depression, despair and disrespect.

 

 

 

 

 

 

Peggy O’Mara is the mother of four grown children. She has gained international celebrity as publisher, editor and owner of Mothering Magazine. She is also the author of four books: Having a Baby Naturally: The Mothering Magazine Guide to Pregnancy and Childbirth, Natural Family Living: The Mothering Magazine Guide to Parenting, The Way Back Home: Essays on Life and Family, and A Quiet Place: Essays on Life and Family, all of which can be purchased in the Mothering Shop. A dynamic speaker, she has lectured and conducted workshops in conjunction with organizations such as the Omega Institute, Esalen, La Leche International, and Bioneers. She has appeared on numerous television and radio programs and has been featured in national publications including The Wall Street Journal, USA Today, The Washington Post, Chicago Tribune, Mother Earth News, and Utne Reader.

Read Peggy O’Mara’s editorials for philosophical information and practical advice about Natural Family Living

Quiet Place Archives