Monday, July 15, 2013

Shillin' Ain't Easy (or Profitable)

By Karen Ernst

World's Worst Couch
I usually find the “Pharma Shill” gambit funny.  It makes me chuckle because I am usually accused of being a so-called pharma shill while sitting on my couch.

Let me introduce you to my couch.  It is nearly twelve years old and has served us well.  It used to have two reclining parts, but those parts stopped working a few years ago.  Because it has been used as a trampoline, some of the springs are broken and there’s a deep indent where one would sit.  I fill in the indent with a Patrick Star pillow, pictured at right.  I won’t give you all the gory details about my couch, but suffice it to say, three boys and one dog have lived with this couch, and they have sometimes been ill.

As you can see, my accomodations and interior design are both very glamorous and clearly part of the "Pharma Shill" lifestyle. 

It is seated in this couch that I have read accusations from anti-vaccine activists and parents that I am being paid by pharmaceutical companies to write comments on Facebook.  I’ve also read that the first-person pro-vax parent stories that appear on both the Moms Who Vax blog and Voices for Vaccine’s Parents Who Vax blog are written on the sly by Ashley Shelby and myself, both of whom have, apparently, “deep ties to pharma lobbyists in Minnesota.”  This would be news, of course, to the very real people who have contributed to our blog over the years. And it's news to Ashley and me, who have yet to even meet a pharma lobbyist in Minnesota.

For the record, neither Ashley nor I have ever received a penny from pharmaceutical companies. Not through Voices for Vaccines (which does not accept contributions from pharmaceutical companies or from the government), not through Moms Who Vax (which, unlike NVIC, accepts no advertising and which has an annual yearly budget of $0), and not for commenting on Facebook. The latter accusation strikes me as particularly bizarre. After all, vaccines account for less than 2% of pharmaceutical companies’ profits. Why would they waste any of that money paying people to write comments on social media, especially when more than 90% of us vaccinate our children already?  It defies logic. But then again, logic has never been the anti-vaxxer's strong suit.

And so they persist, even in the face of the facts.  For the past few weeks, the Vermont Coalition for Vaccine Choice has grown obsessed with Voices for Vaccines, reposting nearly every link we post on
their own Facebook page.  Their Facebook page has also been home to suppositions about our fundraising--false assumptions, which I corrected back in May.  I replied and was able to get them to issue a semi-apology and (later, not pictured) a partial retraction.

However, they were so attached to tantalizing idea of Voices for Vaccines employing me as a "Pharma Shill" that they promote the idea, even after apologizing for having made a false statement.

It was all just annoying and eyeroll-inducing, even funny at times, until Ashley and I decided to take on Jenny McCarthy. Apparently, former playmates are sacred cows in anti-vax land.  As of this writing, our Facebook post has 1,980 comments, many of which from anti-vaxxers who are sure that the petition to keep Jenny McCarthy off TV’s The View is some sort of Big Pharma plot.  

And again, people were certain that we were Big Pharma Shills.  Ginger Taylor, whose writings include disparaging Seth Mnookin for being a long-recovered heroin addict, dubbed us “Voices of Vaccines,” I’m assuming because she thinks we are in the thrall of pharmaceutical companies (though her little syntactical sleight of hand is actually hilarious: I'd love to hear the sound of a vaccine's voice).  Then, my favorite mansplainer, Robert Schecter, also made an appearance to ask on as many threads as possible: "Who funds voices for vaccines?"

When I told him Voices for Vaccines is funded by individual small donations, he persisted, not believing my answers and making up his own.

Marsha McClelland sent out an Action Alert asking for more anti-vaccine comments on the thread.  She herself came to the thread many times to tell us her case was closed and to declare victory, but before doing so, she let us know how Pharma hires people to “pose as having sick children due to non vaccination.”  

(The “there are usually underlying reasons” portion of her comment is particularly troubling because I don’t believe that any child deserves to die from a VPD, whether or not that child has an underlying condition.)  She also tagged Erwin Alber.

Erwin Alber is an interesting case.  He as a New Zealander who runs the “Vaccination Information Network” where he promotes the idea that vaccines cause homosexuality and where he falls prey to his own confirmation bias and purposely fabricated graphs.  One of his favorite ploys is comparing vaccination to Nazi experimentation.  Reasonable Hank has dubbed him “The World’s Worst Person” for visiting a whooping cough memorial page to “educate” grieving parents about the horrors of vaccination. There’s no way to overstate how deeply disturbing Erwin Alber's tactics are.

And so I was dismayed when Erwin took Ginger’s bait and appeared on the Voices for Vaccines page, telling us all that we were Nazis, pharma shills, delusional, and insane.  Fortunately for me,
he stole one of VFV’s photos
, so I was able to ban him with clear conscience.

At that point, the strangest anti-vax infestation ensued.  It began on Erwin’s page, where several people “knew” all about the Big Pharma money connection to VFV.

They came to the VFV thread, per Erwin’s instructions, and they didn’t realize that they shouldn’t also spread their crazy there.  

Anti-vaccinationists are quite convinced that people only advocate for immunizations because they are being paid by Big Pharma (which apparently is too stingy to buy me a new couch.)

The irony, of course, is that people to profit directly from others being afraid of immunizations, and so have a substantial interest in keeping that fear alive. Homeopaths, such as the
“Meat Sweats” homeopath Ashley and I heard at the Minnesota Immunization Rule hearing, sell “cures” to “vaccine injuries” that are too vague to even be given a diagnosis.  In other words, they make money selling plain water to people who are frightened by the internet into believing that an illness was caused by vaccines.  Dr. Mercola lives in a multi-million dollar mansion, a showy display of the wealth he’s accumulated by selling completely unregulated supplements, tanning beds, juicers (even though he tells people not to drink fruit juice), and countless other items to people afraid of immunizations.  Dr. Sherri Tenpenny makes money from selling t-shirts and access to articles she did not write to people who are scared by the falsehoods about vaccines she promotes on her DVDs, which she also sells. 

Worst of all are people like Andrew Wakefield and Keri Rivera who sell unproven and sometimes dangerous “cures” for autism to parents who are frightened into believing that vaccines “damaged” their children and made them autistic.  Lastly, Jenny McCarthy.  Let’s face it:  Jenny McCarthy’s career was in the tank before she began protests to “Green Our Vaccines.”

People who profit from fear of immunization (not necessarily those listed above) come together through organizations like the
Natural Health Freedom Coalition and the Council for Responsible Nutrition who hire lawyers and lobbyists to ensure that the laws regulating their products and practices are as lax as possible and to fight against any attempt in states to tighten vaccine exemption laws (or in the case of Minnesota, simply modernizing its rule).

The casual anti-vaccine parent has been convinced by these forces that they are collectively the Davids fighting the Goliath of Big Pharma, and that anyone who wants to dispute anti-vaccine misinformation or make their communities safe from preventable disease outbreaks is paid by Goliath.  But that’s not really true at all--none of it is.  Sure, Big Pharma is Big.  However, Big Alterna is big business, too, and they are well-organized.  They take advantage of people’s fears, their inability or unwillingness to properly perform a risk analysis, and their fears of having their freedom limited.  Anti-vaccine parents like to believe they are enlightened and informed because they’ve done their “research,” but really, they’ve just bought into the lies of a well-oiled machine.

Fortunately, for pro-vaccine parents, we don’t need Big Pharma to organize us.  We can organize ourselves and follow the science independent of Big Pharma.
But we do need pharmaceutical companies to make our vaccines.  They are not evil for making a profit (albeit small) from the work they do, and the work they do is important.  Without them, millions of children would die each year.  Big Alterna can’t touch that.

Monday, July 1, 2013

But It Gets Nuttier: A Dispatch from the MDH Immunization Rule Hearing

By Karen Ernst

Most of the time, being a pro-vaccine advocate means writing letters or making calls to lawmakers.  For a group of Moms Who Vax, they got a a close, personal view of advocacy when they attended a hearing at the Minnesota Department of Health’s offices in St. Paul.

The hearing was the culmination of over a year’s worth of work by
MDH to modernize Minnesota’s immunization rule so that the vaccines required for school matched the vaccines recommended by the CDC schedule. The department is looking to add Hepatitis A and B vaccines to the requirements for childcare and school-based early childhood programs, as well meningococcal and Tdap (tetanus, diphtheria, and acellular pertussis) vaccines to those required for seventh grade entry.  

The science and evidence that officials from the Department of Health presented was stunning and overwhelming.  Speaking for the department,
Kris Ehresmann reported that a new polio outbreak had recently occurred in Kenya and that 32 people who were exposed to that outbreak then came to Minnesota.  Fortunately, and probably due to high immunization rates, no Minnesotans came down with polio.* Ehresmann also pointed out the commonsense fact that laws requiring vaccines result in higher vaccination rates.  In order to stress the safety of immunizations, Ms. Ehresmann took everyone on the long journey a vaccine goes on to be placed on the schedule, from the moment the FDA decides whether or not to license it all the way through the collection of data through VAERS and the Vaccines Safety Datalink.

Following Ms. Ehresmann was Dr. Bob Jacobson, a pediatrician at Mayo Clinic in Rochester and head of the Minnesota chapter of the American Academy of Pediatrics (AAP).  Dr. Jacobson began by explaining that advocating for immunizations is personal for him (remember this) because he has four fully vaccinated children and a
wife with asthma who needs the cocooning protection offered by flu vaccines and other immunizations.  Bolstering the idea that we do need to require vaccines, Dr. Jacobson pointed out that in his county, the number one risk factor for being underimmunized is being the third of fourth child in a family, since often these families are very busy and vaccines can get lost in the shuffle. He mentioned that often when parents receive notices that the children are missing immunizations, the parents feel embarrassed and angry with themselves for having let them slip.

The last MDH witness was Dr. William Pomputius from Children’s Hospitals of Minnesota.  Dr. Pomputius argued that the state does need a clearly worded and consistently applied policy.  He told the story of
Julieanna Metcalf (whom he did not name) and her battle with Hib meningitis, which she contracted because her body is unable to create immunity from immunizations.  Stories like Julieanna’s remind us all how necessary community immunity is.

It gets personal--and a little nutty.

After this official testimony ended, the general public was invited to testify.  The judge asked everyone to keep their comments to five minutes and submit the remainder in writing for the court record.  (We invite everyone to submit their comments to the judge via email or fax: see below).

Several pro-vaccine parents and stakeholders testified.  I testified and shared the stories I have shared
other places and noted that most parents already immunize their children and that the new rules do not pose any burden on them whatsoever.  Moms Who Vax founder Ashley Shelby also testified, noting that she never imagined she’d have to be sitting in a hearing like this, testifying for commonsense immunization statutes.  Liz Clapero, a Minnesota mother expecting her second son in September, testified that she fully vaccinates her children, especially since her sister-in-law suffered through the pain and financial hardship posed by meningitis.

Ginny Marso and her husband Harry shared the story of their son Andrew, who was a senior at the University of Kansas when he came down with meningococcal disease.  He lost fingers and suffered multiple amputations, spending 4.5 months in the hospital and costing their insurance $2 million.  She noted that the University of Kansas recommended, but did not require, the meningococcal vaccine.  She also noted that when she traveled to Kenya, a young man recognized her meningitis bracelet and shared with her that his friend died of meningitis. (Note:  Andy is publishing a book soon.)

Other important pro-vaccine voices heard at the hearing were Diane Peterson of the Immunization Action Coalition and Dr. Laurel Ries, a local family physician.

As always, the anti-vaccine brigade was out in full force.  Jody Murrens announced to the room at the beginning of the general comment period that she needed to testify immediately because she had to get home to take care of her
vaccine-injured child.  She then proceeded to read directly from the blog of an out-of-state parent who believes her child died from the Hepatitis B vaccine.

Kathryn Loeb spoke for over ten minutes, her testimony consisting mostly of reading the
ingredients of vaccines, such as bovine serum extract and polysorbate-80 (also found in ice cream). She also included aborted fetal tissue (note: this is patently false) and thimerosal (not found in any routine childhood immunizations). She noted that many people are afraid to feed their children gluten, so parents would be frightened if they were presented with such a list.  She also advocated for a sign-off form where parents would have to consent to having those ingredients injected directly into their children’s bloodstream--when, of course, the truth is that vaccines are never “injected into the bloodstream.” They are either injected subcutaneously, intramuscularly, given by mouth, or, like FluMist, squirted up the nose.

Patti Carroll, from the Vaccine Safety Council of Minnesota, testified that she was upset that the natural health and vaccine safety groups had not been included in the original committee to form the rule changes.  (Both Ashley Shelby and I were the parent representatives on this committee, and I believe that having pro-vaccine parents was the correct decision, since the immunization rule only affects those parents who are already vaccinating their children.)  Patti’s testimony then veered away from the rule under discussion and instead turned to the Pharma Shill Gambit, where she read off various research positions Dr. Jacobson (from above) had participated in and connected them to pharmaceutical company funding.  Her lowest blow was the comment, “He said it was personal--you can say that again.”  I confess that at this point, I stopped taking notes. I was, and remain, appalled that someone would impugn the reputation of a profoundly kind man who has dedicated his life to making sure children don’t die.

But it gets nuttier.

At some point, I learned the lesson that sometimes things sound good in your head, but you should never say them out loud.  I think I was fourteen when I learned that. Kate Birch, the next witness, apparently never learned that lesson.  Kate Birch is a Minneapolis-based homeopath and CEASE certified therapist.  (Googling has taught me that one can become a CEASE therapist in 5 days, and then you are set to cure autism.)  

Ms. Birch’s first assertion was that a
baby’s body does not make antibodies until he/she is one year old, so when antigens are injected directly “into the bloodstream” (reminder: vaccines are not injected into the bloodstream), they float around until they settle in the brain or the liver, where they cause some manner of harm.  

And then she shared a story about “curing” a vaccine injury. An eleven-year-old girl came to her after receiving the Tdap.  Ms. Birch said the girl complained of tingling and heart/lung pain. She also developed acne.  At one point, Ms. Birch testified, the girl’s brain became “inflamed” and she was unable to study.  She developed an aversion to all food, “including water.”  Fortunately, Ms. Birch treated her with a homeopathic Tdap preparation.  Afterwards, the girl developed a fever that lasted for two days and she sweated out a “foul, meaty-smelling discharge.” And then she was cured.  Like magic (which makes sense since you’d have to believe in magic to think that homeopathy--
which is only water--could cure anything.)

In her lengthy testimony, which ran more than twice as long as the judge asked commenters to speak, Ms. Birch claimed that such “allergic system disruptions” are caused by
adjuvants.  She also called for every single response for the 2-3 months following an immunization to be recorded.  Somewhere.

The story that received the most local press was the very sad story told by a mother from Thousand Oaks, California, Karen Kain, about her daughter Lorrin, who had a reaction (possibly
Dravet syndrome) to the DTP vaccine (a vaccine now discontinued because of its higher reaction rate) in 1994, and subsequently died in 2009.  It is notable that the two vaccine injury stories that were presented were both from out-of-state and that this one occurred almost 20 years ago.  That’s how rare vaccine reactions are.

I did not stay for the portion after lunch because it promised to be more anti-vaccine testimony, and I had had my fill.  Fortunately,
Tim Bolen’s blog gave this report: “Judge Lipman asked whether we still would oppose the proposed rule based on liberty interests even if Minnesota has a philosophical exemption and Anne responded with a yes and gave the reasonings.” So, anti-vaccine activists are not satisfied with being able to opt out of all vaccines because they want to; they also want to choose which vaccines happily vaccinating parents are offered at well-child visits, and they want to decide whether or not they have safe and healthy communities.

Afterward, Liz and I discussed how surreal it was hearing people say the things we had seen all these years all over the internet
in all caps.

If you would like to make a comment about the sensibility of requiring vaccines already on the schedule for those children attending childcare and school, please email and reference docket # 8-0900-30570 by Wednesday, July 17, 2013. 

You should be aware of, and perhaps motivated by, the fact that you do not have to be a Minnesota resident to make a comment. Anti-vaccine activists from across the country have been writing in to the judge to protest these immunization rule changes. It's time pro-vaccine voices did the same.

*Editor’s note: Even more recently, polio has once again become endemic in Somalia. Minnesota has the highest population of Somalis outside of Somalia, and there is a great deal of travel between the Twin Cities and Mogadishu.