Saturday, June 18, 2016

One Small Nudge, One Giant Push Back Into Vaccine Advocacy

Informed consent.  This all started with the concept of informed consent as it relates to vaccinations.  This is very very important to keep in mind as this whole story unfolds.

As I mentioned in another blog post, HB3016 (the "informed consent" bill) had been vetoed by Governor Fallin after she reviewed solicited comments from the Oklahoma State Medical Association (OSMA) and from the Oklahoma Chapter of the American Academy of Pediatrics (OKAAP).   Governor Fallin's veto statement contained the wording we used in our comments to her office.  The OKAAP applauded the Governor for vetoing a bill that would require providers to supply a copy of the Appendix B from the Pink Book.  A ridiculous requirement that would do nothing to increase vaccination rates nor contribute to the health of Oklahoma children.  The real reason this bill was pushed was in an attempt to scare parents from vaccinating all in the guise of "informed consent".  Another vote to override the veto failed.

It was soon after the Governor's veto that I happened upon a press release from the group, Oklahomans for Vaccine and Health Choice (OVHC).  Boy was I surprised to see my name mentioned in their press release.  I guess in their terribly butthurt state over HB3016, someone was searching for something, anything to use against the OKAAP and discredit us.  So someone happened upon a newsletter article I wrote as Chapter President in November of 2015 about flu vaccine in my office.

My article was circulated around and being held up as "evidence" that I was not obtaining informed consent in my office, but neither the article nor the press release really seemed to have any traction.  I didn't really give it a second thought at this point other than to think, "Wow.  I never would have dreamed in a million years that someone would actually misread my article like that."

Then things ramped up a bit this past week.  With the movie Vaxxed being shown in our state, the American Academy of Pediatrics (AAP) suggested that we post and tweet some positive vaccine safety messages.  So we did.  It didn't take long for the anti-vaccine trolls to come back to our Facebook page and start posting anti-vax information again (as they had done after HB3016 was successfully defeated).  We addressed each comment backing them up with facts and data.  It was tedious posting the same things over and over again, removing insulting and inappropriate posts, and banning people for making threats and unfounded accusations. 

Then out of nowhere, a screen shot was shared with me by a pro-vaxer I know.  

In this closed group, Stop Mandatory Vaccination, on late Wednesday night, June 15th, someone posted a call to action to this group of anti-vaccine zealots and they all but fell over each other running over to my link.  But wait, what link was this?  I didn't recognize it and when I went to it I found out for the first time that I apparently have a Facebook business page I knew nothing about.  There were no ratings nor comments on this "unofficial" business page until anti-vaxers started posting to it.  

The comments were just plain depraved.  It was a no-holds-barred gang-style harassment crusade.  It was so unbelievable, it was almost comical.  I read through the comments and kept wondering to myself if any of these people had even read the article I wrote.   There were many threats of contacting the Oklahoma State Board of Medical Licensure and Supervision (OSBMLS), "shutting down" my clinic, and law suit threats.

Fortunately, Thursday was my day off.  I had some typical appointments scheduled - dropping the dog off for grooming, dentist appointment and an appointment to get my hair cut.  In between my errands, I called my office staff and described what had happened and cautioned them to be aware of anyone - anti-vaxers - contacting the office in any way.  I also called the OSBMLS and spoke to an investigator to describe what was happening to me - online harassment by an anti-vaccine group all based on an article written in a newsletter 8 months ago.  

Interestingly, I also received unsolicited messages on Facebook from 3 different people who thought I should see some screenshots of comments posted to the Stop Mandatory Vaccination call to action. Even after seeing the vile comments on my business page, the comments that were posted to this private Facebook group were, believe it or not, even worse with a few even threatening physical harm to me.

I had also tried for a good part of the day to "claim" the business page with my name on it.  The automated call with a code to enter didn't work despite multiple tries.  I wasn't in the office so I had called and spoken with our receptionist again and she confirmed to me that someone had actually called the office asking about what our office policy was on vaccinations and if we were obtaining informed consent.  Our receptionist asked to put her on hold but the woman quickly added that if we weren't obtaining informed consent it was illegal and that she didn't want the office to get shut down.  When the receptionist put her on hold, she hung up.  

That evening, I updated my husband on what had been happening.  He already knew from the night before that I had been responding to anti-vaxers on our OKAAP Facebook page.  When he saw the business page and the screen shots of comments, he immediately thought I should go to the police.  I won't really go into the other choice things he had to say.

Unfortunately, I was scheduled to work all day on Friday.  I had taken screen shots of everything on the business page and had printed out all the screenshots from the business page and the private group  to take with me to work.  I was planning on running over to the police department during lunch.  As I was getting ready to leave the office, I checked an office phone message.  It was Ginger Taylor from  She behaved as though she were a reporter asking to speak to me to discuss an article she was writing about informed consent and what I was doing in my practice.  It turns out that Ginger is an anti-vaccine activist who blogs and I was advised to just ignore her as her reputation was one of twisting the truth and blogging about it.

I went straight to the police department and spoke with a young officer who scanned through about 15 pages of screenshots that I had brought with me.  He asked me a lot of questions and I basically had to start my story from the beginning.  As he read through the screenshots, he kept shaking his head and commenting on how he couldn't believe that people wasted their time on things like this and that he had no idea that there were such aggressive anti-vaccine people.  He assured me that a report would be filed which is all I was really expecting.

I tried again to "claim" the business page and sent a scanned copy of our phone bill with my business name on it to Facebook and am currently waiting for my identity to be "verified" so I can take ownership of the business page.  I'm actually considering taking ownership of it and keeping it because it's such a beautiful example of how vicious anti-vaccine zealots can be when nothing warrants such reaction.

On Saturday morning, I got word that the OVHC had followed through and had sent out another press release.  So I guess at this point, it's time to directly address what all the frantic excitement is about for these rabid anti-vaxers and my newsletter article.  

Last fall, I remember sitting in my office working on charts and I could hear my nurse bringing patients back to my exam rooms.  She greeted them, asked them to get their baby down to a dry diaper and asked "Did you want to get the flu shot today?".  I started thinking about why she asked this question when she didn't also ask "Did you want to get the pertussis shot today?" or "Did you want to get the polio shot today?" or "Did you want to get the tetanus shot today?", etc, etc, etc.  So I asked her to stop asking this one question and in my newsletter article, I described this and explained why I asked my nurse to stop asking.  Namely, I was tired of treating the flu vaccine differently than we treated all of the other vaccines in my office.

Now according to the anti-vaxers, you would have thought the world came to an end at this point.  I had just unleashed vaccine armageddon and there would be massive casualties - namely innocent children and unsuspecting parents who wouldn't notice that I was flying towards them at a high rate of speed with my black villain cape, windblown hair, and syringe/needles - injecting their child so quickly and stealthily before they even have a chance to ask a question or object.  Seriously, this is what I was picturing in my head after seeing what had been posted about me.  I mean how else would I be able to accomplish this feat of not obtaining informed consent?

Now, about informed consent.  What is that really?  Thankfully, someone a long time ago decided that when it comes to vaccinating, informed consent is satisfied by providing the Center for Disease Control's (CDC) Vaccine Information Statements (VIS).  Is that it?  Yes, it's that simple and it's not just the opinion of the CDC, the AAP, or the AAP's Advisory Committee on Immunization Practices (ACIP).  This is federal law.   Now is that what anti-vaxers want as informed consent?  Not by a long shot.  If the anti-vaxers had had their way in Oklahoma this last legislative session, informed consent would have been the VIS and the Appendix B of the Pink Book (34 pages long).  But as it were, cooler heads prevailed and the VIS is still the legal definition of vaccine informed consent.  As it should be.

Let's take a virtual tour of what an office visit for a typical 6 month old looks like.  The parents have checked in at the front desk and have already interacted with my receptionist.  The nurse calls the patient back and takes them to an exam room and asks the parents to get their child undressed.  She returns to the exam room and takes the child to our procedure room where the child is weighed and measured.  The parents return to the exam room with their child.  My nurse returns to the exam room in about 10 minutes, hands them a copy of an updated shot record (it clearly lists each vaccine individually, the dates, and the forecast for the next recommended shots), a check-out ticket, the vaccine information statements, and she lays the tray of labelled syringes on the counter.  As she's doing this, she explains what all the papers are and then reassures them that I will be in to see them shortly.  I see the child, do "my thing" (read:  update medical and med history, take a developmental history, review the growth charts, field any issues and questions, do a physical exam, you get the idea), and then as I go to prepare the shots (gather band-aids, get an alcohol wipe, grab a tissue, and open the Rotateq package) I'm asking the parents if they have any questions about their baby's shots today.  The baby gets their shots and we do a wrap up session to go over what we had discussed, any concerns we addressed/recommendations, and what to expect at the next visit.  At this point, I move on to the next patient.  

Now what part of this visit involved the failure to obtain informed consent?  Just because I asked my nurse to quit asking about the flu shot did what, exactly?

So regarding this issue about the parent that called back to talk to us about her child receiving a flu shot when she didn't want one.  As I described in my article, a mother called us back after getting home and looking at her baby's shot record, and realizing that she had gotten the flu vaccine.  She had brought her baby in with the intention of getting her shots - all of them - except the flu shot.  She was upset because she had told us 2 months ago that she wasn't going to do the flu shot.

During our virtual tour above, how many contact points were there?  I count 5 ranging from when they speak to the receptionist to when I actually give the shots.  (If you're not following what I'm saying, those contact points are (1) receptionist (2) nurse calls them back (3) nurse comes back to weigh/measure (4) nurse comes back with paperwork/shots and (5) when I'm in the room with them).  Now I'm not laying blame on this mother because she honestly thought we would remember that she had mentioned to us (we aren't sure who she mentioned it to) at the 4 months check-up 2 months earlier that she did not want to have the flu vaccine.  Why she didn't use any of those contact points to alert us to her wishes, I have no idea.  Maybe she didn't know that the flu shot would be given at this visit but then she said she had mentioned it at the last check-up.  So maybe she forgot?  But then she got a copy of the shot record from the nurse before I saw them and the labelled syringes were sitting on the counter.  Maybe she thought we had written her wishes down somewhere.  None of us even remember being alerted 2 months ago.  I regret that this mother was upset and that we didn't communicate effectively.  I don't regret, however, that her child received the flu shot because my job is to see to the health of her child.  Given what a typical 6 month old check up looks like as described above, there was nothing about this encounter that involves a lack of informed consent.  This was not an issue of us giving the vaccine to this baby knowingly against her wishes.  It was an unfortunate communication error.

So the press release from the OVHC is a beautiful example of how cherry picking quotes and taking them out of context can make it seem to say whatever they wanted you to believe.

OVHC claimed:  "Oklahomans for Vaccine and Health Choice- PAC shared the newsletter on Facebook where it began to get national attention. The post was censored and ultimately removed, blocking the admins from Facebook for a short time.  When parents posted questions and comments on the OKAAP Facebook page, those comments were deleted and commenters were quickly banned."

To be clear, I had nothing to do with their Facebook post being censored and removed.  I didn't even know that it had been until I read their press release.  As for the parents who posted questions and comments on our OKAAP Facebook page - the only comments deleted and commenters banned were the ones who were rude or insulting and those that were being repetitive.  The question about my article was posed and answered - once - the very first time it was asked, not 50 times as the anti-vaxers wanted to make us do.

Lastly, I'm confident that rational human beings not of the anti-vax ilk will be able to immediately pick up on how ridiculous my business page looks and be skeptical of what is being proffered there.  That's why I'm actually considering leaving the page alone and keeping it as a momento of this whole silly exercise.  As I posted previously, if what I was doing was so [insert vile terminology here], why would I publicly admit it?  Why is the article I wrote still on our OKAAP website?  I have nothing to hide.  My pediatric colleagues "got it".  After that newsletter was published, there was no outcry that what I had written was illegal or immoral or unethical.  But then anti-vaxers usually just accuse us of getting paid "extra" for each flu shot we give or that we get brownie points with insurance companies.  A long-standing myth among anti-vaxers are that we get paid well to vaccinate.  The reality is that pediatricians tend to lose money giving vaccines in a clinic, we don't get paid extra just for a flu shot, and we sure don't get any favors from insurance companies for giving vaccines.

For the few people that I have spoken to about this at this point, I've been commenting on what a fascinating social psychology experience this has been.  Putting out information making an unfounded accusation to a group of like-minded (narrowly focused) people has the ability to incite a vicious over-the-top mob or herd mentality.  There were a couple of people in the Stop Mandatory Vaccination group who commented that they disagreed but otherwise there appeared to be very little evidence of independent thinking.  

As a good friend stated:  "...these are anti-vaccine, anti-science people, a very few, totally deluded, vile, sometimes criminal, and medically negligent, ruthless, and organised bullies."

To the OVHC and folks at Stop Mandatory Vaccination, shame on you.

Admittedly, this activity has had some consequences.   Those consequences have been on my time - having to waste my time going to the police, explaining what's going on to worried friends and colleagues, dispelling all the anti-vaccine myths that showed up on our chapter Facebook page, and having to write a blog post I never thought I would have to write.  Has this affected my practice?  The anti-vaxers will be disappointed to know that there has been no affect whatsoever on my practice.  Not a single patient concern nor any backlash from the OBMLS.  Although the OVHC and the Stop Mandatory Vaccination people are vocal, they comprise a very very very small minority who, for the most part, live together in an echo chamber.

On the flip side, though, it's been almost 20 years since I've been this active in vaccine advocacy.  Back in the day when the internet was pretty new, dial up was the norm, and the term "social media" hadn't even been coined yet, I was an active and vocal vaccine advocate posting to several message boards.  It seems that now I've been pushed back into the vaccine advocacy arena but I'm happy to do it.  I plan to be a much better vaccine advocate and plan on using AAP and OKAAP resources to make sure that someone speaks up about all the horrible things that anti-vaxers are doing with seemingly nobody to keep them in check.  It just took a nudge and a push and I'm back at it again.

ADDENDUM:  21 June 2016

I received a message today from a reporter at the Enid News and Eagle regarding the OVHC press release.  I have done interviews in the past with this reporter so I knew who she was.  I called her back and got her voice mail so I left a message suggesting that she read this blog post.  I called her back later when I had time to chat and asked if she had gotten my message.  She had and had also looked at this blog post.  Her reply?  "There's no story here".  Go figure.

Friday, June 03, 2016

Followup Oklahoma Legislative Session 2016

In March of 2016, we really started hearing about the dire circumstances of the Oklahoma Health Care Authority's (OHCA) budget being determined by the Legislature this session.  An unprecedented $1.3 Billion budget shortfall in the state was staring the legislature square in the face.  This translated to a potential 25% drop in Medicaid payments which would clearly result in catastrophic access to care issues for Medicaid patients.

During our Annual meeting of the OKAAP board and following on the heels of the OSMA statement interpreted by the media as a "call to doctors" to no longer take Medicaid patients, we decided to put our own position statement together as well as a list of talking points to assist our members in speaking to their legislators about the impending budget crisis. We had met the day before with OHCA's CEO, Nico Gomez, regarding what the chapter could do to help. Nico informed us about the Medicaid Rebalancing Act of 2020 (HB2803) and the $1.50 cigarette tax (HB3210), which would provide revenue to aid implementation of and sustain the Medicaid Rebalancing Act of 2020.  

Unfortunately, despite help from the Oklahoma State Medical Association (OSMA) and many calls to action to our members, the Medicaid Rebalancing Act of 2020 and the cigarette tax did not pass. 

In the end, after a series of legislative gymnastics moves that included removing some earned income tax credits, taking out some transportation bonds, and dipping into the state's "rainy day" fund, the budget sent to the Governor ended up increasing the OHCA's budget by 2% from the original plan which seems to have plugged the hole in the dam.....for now.   It looks like a 25% provider cut has been averted this year but we can certainly expect the exact same issues to rear its ugly head again next year.  I'd call that a narrow win. 

A big win that the OKAAP didn't have any influence on (and didn't know anything about) was SB1148 being called the "Right to care" Act.  On April 12th, Governor Fallin signed this bill into law which bans forced Maintenance of Certification (MOC).  

“Nothing in the Oklahoma Allopathic Medical and Surgical Licensure and Supervision Act shall be construed as to require a physician to secure a Maintenance of Certification (MOC) as a condition of licensure, reimbursement, employment or admitting privileges at a hospital in this state."  

Big. Win. Oklahoma is now the first state to have legislation of this kind. 

Finally, I received a call a week ago from Dr Tom Kuhls asking me to serve on a board of directors for a new grassroots organization: the Oklahoma Vaccine political action committee in Norman. As we work to move Dr Ervin Yen's SB830 through - removing non-medical vaccine exemptions in Oklahoma - this new organization is a much needed addition and I look forward to continuing to be involved with this.