Thursday, April 14, 2016

Diving in, Part 1

For more than a year, I've been holding my tongue on the subject of vaccines for a whole range of reasons. The conversation seems to wax and wane, but now that it is front-and-center once again, I feel as though I am ready to put some of my thoughts and experiences out there.

I will do this in parts because the issues are incredibly complicated and I think they deserve a thorough examination, but because of an experience I had a year ago, I will start with the following letter.  I was invited, by MomsRising to be part of a gathering with Dr. Vivek Murthy, US Surgeon General, to talk about the MMR vaccine. It was positioned as a smallish group of folks that would dig in to the questions and issues surrounding the measles outbreaks that had recently occurred and I spent over a week doing research, asking other moms what they wanted to know, and crafting intelligent questions. When I got to the event, I learned that they had invited hundreds of other people to phone in and listen and instead of a conversation, it was to be a presentation by Dr. Murthy with a few select questions asked at the end (questions vetted by the presenters with no opportunity for follow up clarification or dialogue). Needless to say, I was disappointed and I later discovered that Dr. Murthy was on a tour of cities at the low end of vaccination rates and this was more PR than conversation.

When I asked Kristin, the head of MomsRising, about the format following the event and indicated that I had several unanswered questions, she seemed surprised and offered to forward all of my questions to Dr. Murthy so that I could get answers. I emailed her this letter with the subject line she suggested and have, to date, received no response.

The letter itself is lengthy, I admit, but despite that, I feel as though it barely scratches the surface of the complex issues surrounding vaccines. In Part 2, I will explain my overall thoughts on vaccines and I implore you to either ignore these posts or read them thoroughly and thoughtfully and respond with curiosity versus vitriol.

Dear Kristin,

Thank you and the other folks at MomsRising for all you do to rally, educate, and advocate for parents and children across the country. The work you do is so important, based on what actual moms say they want and need, and has thus far been amazingly effective. I appreciate your efforts to get the Surgeon General in the room to address the concerns and questions of parents regarding measles and the measles vaccine. I am keen to build on the momentum and develop Tuesday’s event into a robust conversation that goes much deeper.

I understand that the logistics of the event prevented it from becoming an actual dialogue, but I think it’s important to recognize that much of the substance of the issue has yet to be discussed. Because there was no opportunity for folks to follow up on answers Dr. Murthy gave in real time, or to clarify any of his answers by having an actual exchange with him or the other two physicians on the call, I believe that there is much more work to do.  Indeed, as demonstrated by the poll taken during the conversation, 56% of the listeners report being either “somewhat” or “very” concerned about the safety of the MMR vaccine. To me, that speaks volumes.  I am writing to you in the hopes that you will forward these questions on to Dr. Murthy or find a way to engage him in another, more conversational meeting where these issues are discussed. 

I am writing to you as a mom of two neurotypical kids who have had most of their vaccines to date. I am also writing to you as a woman with a bachelor’s degree in biology with a minor in chemistry who worked for years in direct patient care as a medical/surgical assistant and then moved on to work in Quality Assurance for the Washington State Mental Health Division. While I agree that this letter is long, it is the result of several conversations with other mothers who have concerns beyond what was discussed the other day. I hope that you will take the time to read it and reach out to me with any questions you have.

The vast majority of our questions have to do with the safety of the MMR vaccine and, from your quick poll, I see that we are not alone among the people who attended this event on Tuesday. Our main issues around efficacy of the MMR are two:

  1.     Using global statistics to demonstrate the effectiveness of the MMR is an unfair comparison. To say that “there have been over 15 million lives saved by the MMR vaccine since 2000 alone,” as Dr. Murthy did in his closing statement ignores the reality that many of those lives would have been lost because the children are living in third world countries without proper nutrition or sanitation. It is incendiary and doesn’t adequately portray the situation here in the United States to use global numbers to talk about domestic issues.
  2.       I can locate no long-term studies that have been done to determine whether people of my generation (born in the late 1960s and early 1970s) who received their full recommended MMR vaccinations actually still have blood titer levels that show that they are immune to measles. In response to one person’s question, “Does immunity wane as people get older?” Dr. Murthy answered, “There doesn’t seem to be any evidence that suggests that.” I’m concerned that this conclusion has been reached without any actual scientific studies and it may, in fact, “seem” that immunity doesn’t wane because of the drastic drop in the incidence of measles in the US. It would seem to be a fairly simple examination to undertake a study of adults across gender, ethnic, and socioeconomic populations and determine whether or not they are still immune to measles thanks to the MMR vaccine. The term “herd immunity” or “collective immunity” gets used an awful lot with regard to vaccines, but I don’t know that it has ever been tested with regard to vaccinations. There is evidence that this phenomenon holds true in animal populations and with naturally-acquired disease, but I would like to see a study that shows that it is valid for vaccine-acquired immunity. We can’t base public policy on a theory.

The following are questions regarding the safety of the MMR vaccine.

  1.            On Tuesday, Dr. Murthy assured MomsRising supporters for the second time that they ought not to be concerned about the MMR vaccine shedding live virus. “Don’t worry about exposing others,” he said. “Carry on about your lives.” However, parents of children who are immunocompromised, either naturally or due to medications like chemotherapy drugs, are often told by their physicians NOT to get their other children vaccinated with any live virus, including the MMR. In addition, the vaccine insert produced by the manufacturer, Merck, is written as follows: “Excretion of small amounts of the live rubella virus from the nose or throat has occurred in the majority of susceptible individuals 7 to 28 days after vaccination.” (emphasis mine). Additionally, this article in a mainstream media outlet talks about the fact that experts know that recently vaccinated individuals can spread disease. And yet, parents who choose to delay or forego certain vaccines for their children are routinely vilified and blamed for disease outbreaks. I believe that this is one very compelling reason why so many parents are confused about these issues. Whom do we believe?
  2.       When vaccines are tested for safety, they are tested in isolation; that is, one at a time. But more often than not, they are administered to children in tandem with other vaccines. Why are there vaccines on the US schedule that are given in the same day but not tested together to assess their effects? Much like baking soda and vinegar are inert alone but explosive in combination, it is scientifically possible that when two different vaccines are put together, they will act differently in the body of a child than they did when tested alone. We can say that we think they are probably safe together, but without rigorous testing, it is irresponsible to give them to children with developing immune systems without being much more certain.
  3.       Also, when vaccines are tested for safety, they are not tested against truly inert placebos such as saline solution. Often they are tested against another cocktail of preservatives and adjuvants that are only lacking the vaccine itself. We are not just concerned about the vaccine components, we need to know what effect substances like aluminum adjuvants and MSG and pig gelatin have on the human body when they are injected. We also need to know what effects they have when they are injected in large amounts, as in the case of multiple vaccines given on one day. I wouldn’t eat a “safe” dinner off of a toxic plate, and I don’t want to inject my children with a “safe” attenuated virus that is held within a toxic set of preservatives. We deserve to know that each and every component of the vaccines we are being given is safe.
  4.       All three of the doctors spoke of the Institute of Medicine as an independent body that reviews all of the safety and efficacy studies on vaccines (among other things). I am curious to know whether the IOM crafts and undertakes their own studies or simply reviews the studies done by other organizations that may have a vested interest in the outcome. The design of a scientific study is as much responsible for the data set that emerges from it as anything else, and if truly independent studies are not being designed, we cannot hope to get accurate information.
  5.       Dr. Murthy encouraged parents to talk to their healthcare providers if they have questions about whether or not their children should have a particular vaccine. I agree entirely, but I have to say that we don’t live in a perfect world where all families have healthcare providers that have the time to have detailed conversations during a well-baby check, have the intimate knowledge of what a vaccine package insert says, or even get their vaccines in a doctor’s office.  Families can go into Walmart and get vaccines for flu, chickenpox, HPV, pneumococcal pneumonia, hepatitis, meningitis and MMR, in addition to others. I am concerned that many of those folks do that because it’s cheaper and easier than making a doctor appointment, and I wonder how robust the patient education is or whether there are opportunities to ask complex questions, or if most parents even know what or how to ask. His answer is predicated on the assumption that most parents have a trusting relationship with their child’s doctor and I fear that that is inaccurate. I think it is also possible to discount the intimidation factor most people have when faced by a person in a white coat.  
  6.            Dr. Cohn and Dr. Murthy both talked about the requirements for providers and vaccine manufacturers to report adverse events to the VAERS. Further, Dr. Cohn explained that patients and families can also report to this body any adverse effects they experience due to a vaccine. This prompted many questions. First, how many parents are told that this is an option and offered information on how to go about reporting to VAERS? Second, is there an estimate of how many parents don’t report side effects because they either can’t tell whether they are related or because it will cause them to have to make another doctor appointment for their child, which is both costly and time-consuming? Third, in the case of a family who receives their vaccinations from a place like Walmart, how likely are they to report any issues and to whom? If they don’t know about VAERS and they weren’t going to a doctor for their shots in the first place, they aren’t likely to seek one out to report negative side effects unless they are severe. Lastly, Dr. Cohn said that the CDC, and the Department of Health and Human Services follows up on every report made to VAERS and I am curious to know what the threshold is for deciding that action is required in the form of further study. How many of the same or similar reports have to be made in order for them to determine that this is an issue and how much time elapses between the reporting of an adverse event and the review?  Finally, I am curious about something Dr. Murthy said in regard to autism and MMR. He said that, “because autism symptoms show up around the same time that kids are getting the MMR, there are some people who think the two are related, but they are not. This is why we need to really look at the populations, we need large numbers to do rigorous independent study. We need to look at broad data sets to see and what the data says is that there is no connection.” I am interested in whether there has ever been a study done on the relative health of vaccinated children versus unvaccinated children. We know that there are entire pockets of unvaccinated children in the United States and it would seem relatively simple to compare them to children who have been vaccinated on schedule. This seems like a straightforward study that would provide some interesting information about a range of potential issues that we haven’t considered might be correlated with vaccines.

Thank you for indulging our questions. I find it fascinating that the amount of media attention given to this most recent measles outbreak has spurred legislation in several states and, yet, 65% of the people you polled on Tuesday indicated they are not concerned about the outbreak. That said, I think this offers us a great opportunity to engage in some intelligent exchanges about measles and the MMR. I appreciate your effort to get answers for your supporters.  If you decide not to forward this on to Dr. Murthy, please let me know and I will try to find another way to have the concerns addressed. 


Kari O’Driscoll


Portia said...

Thank you . You raise some good ' looking forward to hearing the answers

Carrie Link said...

Thank you for using your unique blend of strengths, to take this on.

Related Posts Plugin for WordPress, Blogger...