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Dec
01

Honest Disagreement in a Pro-Vaccine World

Author // Louise Kuo Habakus

A while back, I received a comment from “Anonymous” in response to one of my blog posts. She expressed dismay that she had to rely on other parents to vaccinate their children in order to keep her immunocompromised daughter with selective IgA deficiency safe.

I was moved to respond. And then I hesitated… Was “Anonymous” a real mom? That may sound like a cold question, but the CDC and other pro-vaccine stakeholders routinely pay “mommy bloggers” to write, and comment, about the benefits and advantages of vaccination.

You can also read a 2011 presentation about the CDC’s mommy blogging program, titled “Harnessing the Power of Social Networks, Mommy Bloggers, and Google,” on the CDC website.

And yet, it really doesn’t matter whether “Anonymous” is a real mom or not, because her message that all children must be vaccinated to protect the immunocompromised has been so avidly promoted by pro-vaccine interests that scores of parents believe it to be true.

So let’s assume that she’s real.


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Dear Anonymous. You’re not alone.

My heart is with you and I’m saddened to read about your daughter’s pain.

Our readers include countless parents whose children have a wide range of pediatric, chronic, autoimmune, neurological, and developmental conditions. In fact, most parents can relate to your family’s situation with empathy, not just sympathy, because sick kids have become the new normal. And many of these children, like your daughter, have some form of immune dysregulation. They navigate their worlds— socializing, learning, communicating, eating, sleeping, exercising, and even simply breathing—with difficulty and oftentimes at significant personal risk. When we say that we feel your pain, we truly do. It’s terrifying.

There’s a temptation to think in terms of right and wrong, to take sides and dig in. Rather than framing the issue in terms of “you versus me,” it’s really just us. If we speak to each other, mom to mom, I know we’ll find that we care about the same things: healthy children, a healthy society, a hopeful and bright future.

We may have an honest disagreement about vaccination but we can still engage respectfully. And at the end of the day, we’re on the same side.

My views about vaccination probably weren’t so different from yours. As a child, I received all recommended vaccines. As an adult, I happily extended my arm, not just willingly but proactively, and exhorted everyone I love to do the same. As a parent, I vaccinated my children with required, recommended, and optional vaccines. Nothing would’ve stopped me because my belief in vaccines was unexamined, reflexive, and integral to a broader belief system.

Nothing except one thing: My children. They suffered serious reactions to their vaccines. Here’s where people like to ask, “How do you know it was the vaccines?” and I reply, “I know.” I saw what happened. I researched. I read the studies. I spoke with doctors, scientists, and other parents. I drew from my own experience as a senior corporate executive for a couple of multibillion-dollar companies. But none of that really matters. I’m their mom. I place their interests above all else and that is all. When I came to grips with what happened I was able to help them.

On my journey, I learned things that I did not want to learn. I experienced loss, mostly in the form of relationships with loved ones, friends, neighbors, and colleagues who could not meet me in the space of open and compassionate inquiry. It was too threatening.

But I discovered new people—smart parents asking hard questions. I opened the PubMed vault with a few clicks of my mouse. I spoke with researchers at conferences. I unearthed mountains of scientific literature, marketing materials, package inserts, corporate correspondence, FOIA requests, government documents, and more. I stopped sleeping and started reading with the desperation of a mom who needs to help her children.

Maybe you can relate because you burned the midnight oil, too, studying about your daughter’s diagnosis.


What I Wish

I hear the despair in your comment… a prayer, really, that more people understand your daughter’s plight. I feel the same. Almost no one understands why they vaccinate. They just do because they think it’s what good, responsible parents do. I wish more parents would blindly trust less and study first before vaccinating their children, but I know it’s not realistic. Who wants to do that? Who has the time? At first, I felt like Cassandra from Greek mythology—not because of her gift of prophecy, but because no one believed her. I learned that vaccination was more taboo than sex or money…and that eyes would glaze over in 10 seconds flat. People could not run away from the topic fast enough. It was almost funny. No, it was horrible.

There are deeply embedded assumptions about vaccination that simply aren’t correct. These views are not well understood because they are not aligned with commercial interests.

I’m going to tell you what I wish people understood about this complicated, messy issue that can’t be distilled into pat soundbites.


The Universality of Parental Anguish

You and I share the pain that parents feel when their children aren’t well. Whether it’s children with life-threatening allergies, severe asthma, or autism; children on a feeding tube or with a tracheotomy; children with cancer, thrombocytopenia, a rare inflammatory condition, or immunodeficiency disease—it doesn’t matter. There is no contest, no competition, no rivalry. No one wins. When I meet the parent of a sick child, my heart splits wide open. What is very different, however, is that vaccine injury is not acknowledged. Parents want their vaccine-injured children to be recognized. Vaccine injury is real, as is the deep pain, grief, anger, and resentment of the families who—upon vaccinating their children with great trust in the belief they are doing the right thing—witness their children plateau, decline, regress, or disappear with heartstopping injuries. Some paid the ultimate price.

Our children matter, too. What an odd thing to say, you might think. Why do you doubt this, you might ask. It is because we live in a society that privileges the lives of some children over others. Any parent who would demand that all children submit to a medical intervention that carries with it the known reality that some will sustain catastrophic brain damage or death in order to protect her child does not grasp the monstrous enormity of the request.

A parent who understood would never ask.


Immunocompromised Kids Can Be Vaccinated

The CDC says that your daughter can be vaccinated. Who knew? Most people don’t. You have a choice whether to follow the CDC’s guidance. Before calling on others to take risks to protect your child, this is something you should know.

The most common genetic condition causing primary immunodeficiency disease is selective IgA deficiency, which your daughter has. There aren’t any vaccines on the childhood schedule that school-age children with selective IgA deficiency can’t get.

Further, the CDC advises that there aren’t any vaccines that children with kidney or spleen failure or asymptomatic HIV can’t receive. In fact, there are only three shots which children with organ transplants, or those currently undergoing chemotherapy, can’t have: the live virus MMR, chicken pox, and nasal FluMist vaccines. And the latter can be replaced with injectable flu shots.

Before asking other children to receive MMR and chicken pox vaccines to protect your child, you might also want to read the package inserts. There you will see warnings that transmission [of disease] through close personal contact with the recently vaccinated is possible. Immunocompromised people of all ages, including children, are encouraged to avoid people who have recently received certain live virus vaccines. Some hospitals explicitly offer this guidance. Schools and daycare centers do not.

Ironically, it might be vaccinated children you encounter who pose the greatest risk to your daughter.

Ironically, you might find that parents like me are advocating for your daughter because we firmly believe in vaccination choice. Consider this scenario: Let’s assume that, despite crystal-clear CDC guidance that your immunocompromised daughter can be vaccinated, you prefer to avoid or delay some or all shots for your daughter because of her medical condition. Let’s also assume that you are denied a medical exemption because the government says your daughter can and must be vaccinated now and your state health department overrules your daughter’s physician. Then what? Who gets to decide? The scenario I just described happens—a lot more than people realize.


Everyone Must Be Vaccinated

When you ask people to vaccinate, you are reinforcing a prevalent, well-funded message. What’s surprising is that the exhortation is not accompanied by research about safety and effectiveness, or by disclosure of the tradeoff with vaccine injury. Beyond the obvious— protect yourself, protect loved ones, protect the immunocompromised—here are the other top reasons the CDC lists why people should be vaccinated:

  • You’re too busy to get sick.

  • You don’t want to miss what’s important to you.

  • You’ll have to pay for medical care if you get sick.

  • You like to travel.

  • You want peace of mind.

  • You don’t want to feel “crummy” (their word).

The National Foundation for Infectious Diseases adds:

  • Your loved ones and co-workers need you.

These are not good enough reasons to abridge fundamental rights and mandate one-size-fits-all vaccination in the absence of a legitimate public health emergency.

This alarmist CDC brochure warns parents about the risks and responsibilities for those who fail to vaccinate; again, with not one word about the dangers or precautionary measures that can be taken, and no mention about who’s accountable when vaccine injury happens.

Public health interests assert that vaccination is “safe and effective” but…

  • There’s no mention of the federal government’s National Vaccine Injury Compensation Program. Do you ever wonder about the thousands of families who were awarded billions of dollars for death and catastrophic vaccine injury? Who are they? Why don’t we ever read about them? What can they tell us about why and how vaccine injury happens?

  • There’s no mention of the federal government’s Vaccine Adverse Events Reporting System. Do you ever wonder about the hundreds of thousands of cases reported? There are more than 551,189 incidents reported as of May 14, 2016. This represents only about 1 to 10 percent of total estimated injuries since most doctors don’t report injuries and most people don’t know they can.

  • There’s no mention of the vaccine makers’ package inserts, with their surprising, eye-opening, and disturbing disclosures.

Everyone who intends to vaccinate should read the informational inserts included with vaccines. Doesn’t that seem strange?


Who’s looking out for the children?

More than half of all U.S. kids have chronic, autoimmune, immune, neurological, or developmental disorders. This includes your daughter and my boys. Why is there no sense of urgency to help our children?

Not one of these organizations prioritizes answers for our children above all else.

Not one of these organizations is paying more than lip service by devoting serious resources and intention to uncovering why there are so many sick, allergic, ADHD, asthmatic, autistic, OCD, and otherwise behaviorally, socially, learning, metabolically, and immunocompromised children.

Not one.

Their top priorities include shareholder value, executive compensation, scientific renown, commercial success, philanthropic cred, professional advancement, and the amorphous, sounds-great-but-what-does-it really-meanand- how-do-you-calculate-it “greater good.”

Motivations may be varied, but they have coalesced around the singular objective to promote vaccination, taking it upon themselves to make the risk/benefit tradeoff for us all.


Time to Roll Up Our Sleeves

It takes courage to voice honest disagreement but you did it and others parents do, too. Many more are quietly supportive and fervently hope that others with—you name it—more money, brains, beauty, celebrity, or credibility will follow suit. And they are speaking out, with more to come. As the conversation expands, we must resist the temptation to respond with sarcasm or self-righteousness. Our kids remind us what needs to be done. This is the kind of work that will make the world a better place for our children.

We can make vaccines safer but we cannot make them safe. This is why there must be choice—there should be personal belief and religious exemptions in all 50 states. Parents must decide for their children. Vaccine mandates undermine our societal fabric by eroding our personal, religious, conscientious, parental, and human rights.

Our attention must be toward the future. More parents are seeking providers who are likeminded and value a different kind of doctor-patient relationship. Growing numbers of physicians are answering the call, and others will follow suit. A freed market will sort it out, and some waiting rooms are going to be very empty. The transition won’t be easy or pretty. Our job as parents is to remain steadfast and demand practitioners who respect our beliefs. Some will give excuses but the doctors we want will rise to a higher standard. It’s time that medicine stood up for itself.

Thank you, Anonymous, for posting your comment. It challenged me to respond in a way that honors our shared humanity. I welcome an ongoing conversation.

And I send peace, light, and love to the growing numbers of people who work in myriad ways to bring positive change to the more beautiful world our hearts know is possible. Consciousness is already shifting. Keep holding space and finding strength in community.


Pathways Issue 52 CoverThis article appeared in Pathways to Family Wellness magazine, Issue #52.

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