by Louise Kuo Habakus
We received a comment from “Anonymous” in response to a recent post who 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.
Is Anonymous a real mom?
This may sound like a cold question but our savvy readers know that the CDC and other pro-vaccine stakeholders routinely pay “mommy bloggers” with our tax dollars to write (and comment) about the benefits and advantages of vaccination. Here’s an ad circulating last month from Megan Media:
Megan Calhoun of Megan Media was a “public relations executive at leading firms where she specialized in healthcare.” After making the social media rounds via outraged parents, this ad is no longer accessible to the general public but others will surface. It’s just one of countless such opportunities. You can also read a 2011 CDC presentation about their mommy blogging program.
Whether this mom is real doesn’t matter because the 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.
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 — whether socializing, learning, communicating, eating, sleeping, exercising, and/or 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 journey led me down some surprising paths
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 understood 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… no, 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 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 don’t have the budget to hire Megan Media.
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 — vaccinating their children with great trust and the heart-centered belief they were doing the right thing — witnessed their children plateau, decline, regress, or disappear with heart-stopping 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 that 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-aged 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: MMR, chickenpox, and nasal FluMist. And the latter can be replaced with injectable flu shots.
Before asking other children to receive MMR and chickenpox 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.
Who gets to decide?
The scenario I just described happens… a lot more than people realize.
(For more information, read What About the Immunocompromised?)
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. Take a peek. Beyond the obvious (protect yourself, protect loved ones, protect the immunocompromised), here are the CDC’s other top reasons 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).
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 holding the bag 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 over 544,000 incidents reported as of 3/14/16, which represents only about 1% to 10% of total estimated injuries since most doctors don’t report injuries and most people don’t know they should. 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 them.)
Doesn’t that seem strange?
Influence is spelled with a capital “I”
Do you imagine what could be possible for your daughter and others with immune dysregulation if real money could be invested to learn the causes and find a cure? I feel this way about vaccine injury. World class researchers have already started to draw links between vaccines and autoimmunity, as just one example. So much more can and should be done.
Alas, seduction has always been sexier than precaution. The CDC spends about 1/2 of 1% of its total budget on safety. Let’s take a look at the stakeholders on the promotion side. They include the Centers for Disease Control and Prevention, state health departments, the National Institutes of Health, the American Medical Association, the American Academy of Pediatrics, the World Health Organization, vaccine makers, and insurers, in addition to the mainstream media, hospitals, universities, and numerous charities, NGOs, writers, bloggers, and others who operate at their behest, in their service, and under their patronage.
Pharma spends $27+billion on drug promotion and $3+ billion on direct advertising to consumers NIH line item funding estimates* = nearly $30 billion* (vaccine related; immunization; infectious, emerging infectious, rare, vector borne diseases; pneumonia; influenza; HPV, malaria, TB, AIDS vaccines; hepatitis) State health agency funding $11.5 billion CDC budget $11+ billion Five drug companies control 70% of global vaccine sales revenue: Merck $6.25 billion Sanofi Pasteur $5.85 billion GSK $5.26 billion Pfizer $4.48 billion Novartis $1.53 billion World Health Organization budget $4.4 billion GAVI global vaccine alliance cash proceeds from donors and investors $1.4 billion (GAVI/vaccines are the biggest investment of the Bill and Melinda Gates Foundation, the largest charitable foundation in the world)AMA lobbying spend ranks #2 (read this fascinating article from the NY Review of Books) AAP protects the professional interests of its pediatrician members, with an annual budget of $75-80 million
Together, we’re talking about the kind of direct and indirect clout that can be purchased and brought to bear by organizations and individuals (including the richest man in the world) that collectively control and deploy hundreds of billions of dollars. This may seem like overkill until you remember that vaccines are a $33+ billion global business that’s projected to reach $61 billion by 2020.
* NIH spending on autism? $216 million. Urologic diseases? $548 million.
Who’s looking out for the children?
Over half of 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/or immune-compromised children.
Their top priorities include shareholder value, executive compensation, scientific glory, commercial success, philanthropic cred, professional advancement, and the amorphous, sounds-great-but-what-does-it really-mean-and-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.
Unnamed casualties in a pro-vaccine world
Beyond sick and injured children, there are numerous other unnamed casualties in a pro-vaccine world that mandates vaccination and increasingly endorses varying degrees of bullying, social stigma, and coercion:
Informed consent is the international human rights standard. It is a hallmark in the ethical practice of medicine and a non-negotiable expectation synonymous with freedom, justice, decency, and transparency.
Parental rights encompass the responsibility and privilege of parents to direct the upbringing and make decisions in the best interests of their children.
RELIGIOUS FREEDOM & CONSTITUTIONAL INTEGRITY
There are vitally important reasons we protect religious exemptions to vaccine mandates that have nothing to do with vaccination. Compulsory vaccination is coercion through the exercise of governmental power. It compels our submission to state authority. The Constitution is one of enumerated powers. Government derives its power from the people, not the other way around.
The physician’s Hippocratic Oath, to do no harm, has resonated for over 2,000 years. The trust and confidence that doctors will place our needs first is a keystone of care. The erosion of this relationship is part of the healthcare crisis. The system requires doctors to prioritize public health and insurer directives to the detriment of the individual.
MEDIA INTEGRITY AND FREEDOM OF THE PRESS
The U.S. has been plummeting in the world press freedom index (from 20th in 2009 to 49th in 2015). Our media is compromised by consolidation and corrupted by industry advertising, as evidenced by the circulation of false information that’s designed to engender confusion, fear, and panic… like this story and this one when the truth is more like this. There is no freedom and no democracy without a free and open Internet and a truly free press.
Your comment, that parents who don’t vaccinate make you sad, was respectful (thank you). But I wonder if you know that it is part of a much broader narrative that demonizes a group that holds a minority view. There is tacit societal endorsement, whether proactive circulation or passive silence, of a kind of hate speech directed at parents who question vaccines. The language is so mean-spirited and vitriolic, it’s not far-fetched to wonder if the intent is to incite violence. We hear that parents who choose not to vaccinate are stupid,irresponsible, parasitic, deceitful, idiots, jerks, assholes, freeloaders, and unworthy of consideration who should be shunned, punished, sued,incarcerated, shut up, fired by their doctors, threatened, and relieved of their children.
This kind of abusive rhetoric is uninformed and harmful. It is also cowardly bullying and should not be tolerated. We’re better than this. There’s too much at stake.
It’s time to roll up our sleeves
It takes courage to voice honest disagreement but you did it and others parents do, too. We 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.
DO THE RESEARCH
There are serious questions about vaccine safety and the answers must inform vaccine policy. Three groups are urgently in need of serious scientific inquiry:
Those vulnerable to vaccine injury — who are they and how can they be identified prior to vaccination?The completely unvaccinated — what are their short- and long-term health outcomes and how do they compare with the fully vaccinated?The vaccine-injured — what do we know about them and how can they be helped?
There’s more than enough money and this is long overdue. I strongly believe this research can help your daughter, too.
Governments have a bad habit of taking too long to say sorry and failing to do it properly. People who are injured by government-mandated vaccines are entitled to respect, remuneration, and care. This is what the National Childhood Vaccine Injury Act of 1986 was supposed to help accomplish.
NO VACCINE MANDATES
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 fifty states. Parents must decide for their children. Vaccine mandates undermine our societal fabric by eroding our personal, religious, conscientious, parental, and human rights.
JUSTICE FOR THE VACCINE-INJURED
The spirit and execution of the National Vaccine Injury Compensation Program have fallen woefully short of Congress’s original objective. The goal was to provide expedited and non-adversarial resolution of claims with a lower hurdle for proof of causation to give injured families — who vaccinated at government behest and were injured through no fault of their own — the benefit of the doubt. There’s no reason to abandon this. Proper implementation will allow many families to receive compensation where they would otherwise be boxed out by their inability to retain counsel. Here’s what’s needed:
Educate about vaccine injury and VAERS reporting, and mandate provider submission with enforced penalties.Update the injury compensation table to include newer vaccines and injuries. Implement the original intention for the program — make it expedited and non-adversarial, remove conflicts of interest and other obstacles. Restore access to legal recourse by removing industry liability protection for families who do not receive satisfaction in the administrative compensation program.
Leading vaccine injury attorney Robert J. Krakow says:
The Vaccine Program has fallen short of expectations. While it is good there are some individuals who receive compensation in the most clear-cut cases, the more difficult and troubling issues surrounding vaccine injury are not receiving the legal attention and fair process they merit. This is because the lack of discovery shielding the pharmaceutical industry prevents injured persons from learning the true facts about vaccine design and production. In addition, although the Vaccine Act contains provisions allowing injured persons to sue the vaccine manufacturers, the Supreme Court of the United States effectively eviscerated that provision by interpreting the law as providing almost complete liability protection to the manufacturers. This is unprecedented in American law — the only other example is the liability protection legislation Congress provided for firearm manufacturers. Sweeping liability protection like this undermines the historical and time-tested legal check and balance that encourages manufacturers to behave responsibly by making products such as vaccines as safe as possible.
Societal failure to address injustice is neither amorphous nor harmless. History is a grim and honest teacher. Every person who understands this issue has a responsibility to speak out. Injustice for one can so easily escalate into injustice for all.
THE FUTURE OF MEDICINE
Our attention must be towards 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 free 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 the 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 <3 Louise Kuo Habakus is the founding director of Fearless Parent™, lead host and producer of Fearless Parent Radio™, and mom of two. She is a published author and runs the non-profits Center for Personal Rights and Health Freedom Action. Louise was a Bain consultant and a C-level executive in the financial services industry. She holds two degrees from Stanford University. She is an advisory board member of GreenMedInfo and The Documenting Hope Project.
Photo credit: jannoon028 / shutterstock