Monday, May 30, 2016

When "Owning It" Is Harder Than it Sounds

Because how do you write about the things that aren't yours to tell? How do you begin to separate what is yours and what isn't?

It is a tricky proposition, this. And not only because of the risk of hurting someone I love, but because of what it means to me. Sorting through the seminal memories and moments in my life means really looking hard at where my head was, where my heart was, and what I knew and wanted at the time. It would be easy to look back with the accumulation of experience and wisdom riding shotgun and nod knowingly in the direction of what should have been, but that doesn't make for a true story. It smacks of justification or pity-partying and paints a picture of Right and Wrong that doesn't exist in life, to be sure.

The hardest bit is in the owning of my entire, smelly backpack of crap and roses.

Own it, someone says, urging us to stand up for ourselves and not be ashamed of who we are. It sounds empowering - a battle cry for my generation. Owning it is frightening.

Owning it means I acknowledge an attachment to the story and once I'm attached to something, the idea that it could be taken away is frightening. Something owned can also be un-owned. Writing about other people's shit is the epitome of non-attachment. It says, "That isn't mine, but I'll tell you all about it and together we can exchange looks expressing how happy we are that it isn't ours." There is a complicity inherent in telling someone else's story. Telling my story - owning it - feels very lonely and vulnerable.

Owning it also opens me up to the risk of becoming defined by the story I tell; having it morph into a shorthand by which other people describe me or think they 'know' me. The complicity has shifted to include everyone else but me as soon as I own my story and tell it honestly.

I've discovered that it is so much easier to solve someone else's problems than it is to deal with my own. I once told a friend. She agreed. And now, when I sense the urge to find the cracks in someone else's armor, I am prompted to wonder whether it is because I am ignoring my own.

Ultimately, the only lens through which I can see life is my own, and that means that the only story I have the right to tell is mine. Anything else is just make-believe. And, it turns out, I'm not much of a fiction writer, so I guess I'll just keep sifting through to find the stories that are mine.

Thursday, May 26, 2016

Stream of Consciousness Morning

Saturday, Sunday, Monday I had hours for writing. The luxury of time meant that I woke early, poured coffee, sat at a rented desk and pounded the keyboard until I had 60 pages. Walks along the beach, more coffee, shuffling pages of memories and piecing things together.

Tuesday and Wednesday I was back in my normal life - driving, cooking, shopping, working at my 'other' job which doesn't entail writing so much as networking and trying to hawk what I've already written. But this morning, I could see a way clear to more writing.

First, the tasks that launch the day - packing lunch, toasting bagels, walking the dog.

My mind drifts and swells. I marvel at how much of my writing happens while I smear cream cheese on the bagel, tug the dog along our familiar route, stand in the shower.

I pass dogwood tree after dogwood tree, loaded down with so many blossoms that I can't see the leaves beneath them. I am struck by the sheer weight of beauty, how it weighs down the branches, the stems of peonies curving to rest the flowers on the sidewalk, their scent rising up to me. These plants with their short-lived bursts of shocking glory are my favorite. The ones with the less showy, compact blossoms that live on sturdy stems and branches barely merit a glance. What does that say about me?

There is a Frito-Lay truck parked along our route to school and I think about how, sometimes, I have an uncontrollable craving for potato chips. Not often, but when it comes it is intense. I imagine being the driver of that truck, pulling over to a quiet alley, climbing over the seat to get to the boxes and boxes, ripping open a bag and plucking one paper-thin chip out and then another and another. Wiping the grease on my pants.

We pass an apartment whose living room window frames a birdcage and I think, "Do people still keep birds as pets?" I remember my sister's parakeets - one blue and one green. The biting, ammonia smell of their cage, the wooden swing, the way she had to put a blanket over it at night to keep them quiet. What would have happened if we had simply turned out all of the lamps and let the actual night take over? Would they have slept?

Everyone else is gone for the day but there are imprints everywhere. Stray shoes, crumbs on the counter, a favorite pencil on the kitchen table. I am alone to write but the end of the day calls. What's for dinner? Are there towels clean? What time is my guitar lesson?

Monday, May 16, 2016

Does Anyone Else Drive Like This?


 
It seems that every new milestone my kids hit offers me an opportunity to examine why I do the things I do. I often fall into the trap of thinking that everyone does things the way I do, simply because I've always done it that way. Fortunately (?), my kids challenge me on that every once in a while.

In the past year, Lola has begun commenting on the way I drive. I don't know if it's because she is watching her sister learn to drive or because she is old enough to sit shotgun or if it has something to do with her drinking coffee and wearing makeup these days. All I know is that she gets annoyed with me for not stopping on a dime.  In the morning, the route to her school is pretty bumpy with potholes and lots of construction between here and there. She often brings a cup of coffee with her to drink on the way, but because of the condition of the road, it's a dangerous proposition to try and drink it unless the car is fully stopped.  Putting lipstick on is pretty treacherous, too, if you only want to apply it to your lips. And therein lies the rub.

I never really paid attention to it, but there is this game I play with myself when I drive that started back when I was a teenager driving a stick-shift. This game got more compelling when I started driving a hybrid car. The goal is to never come to a complete, full stop and avoid using the brakes if at all possible.  When I was driving a manual, I would try to slow the car by anticipating the traffic in front of me and simply downshifting, and I considered it a win if I could successfully slow down enough for a red light to stay in second gear and come up on the car in front of me (or the light itself) just as the light turned green, so I could begin to accelerate without ever hitting the brakes. I got really good at it.

Don't judge me.

When I got my hybrid, I was fascinated by the display screen that indicates whether the car is using gasoline or the electric battery. When you're coasting or apply the brakes, it shows you that you're recharging the battery, and when you accelerate, you can see that you're using gas or gas plus the electric battery.  In the first few weeks I had the car, I watched (probably WAY too) closely and loved the idea that I could coast to a stop - or nearly a stop - without using any gas at all. The game intensified.  I have nearly perfected my technique on the routes I normally drive, unless there is a huge traffic jam. I watch for pedestrians, cyclists, and cars ahead of me and gauge when to take my foot off the gas and begin coasting so that I can merely slow down and then speed up at the next opportunity, depending on whether it's a red light or a person crossing the street.

While it isn't necessarily forefront in my mind (I've been driving for nearly 30 years, so it's pretty second-nature at this point), there are times when I'm aware of it and I mentally congratulate myself for a particularly tricky maneuver. But it's all in my head and, until recently, I was the only one who knew what I was doing. Unfortunately, while I'm busy patting myself on the back, Lola is in the passenger seat, thermos or lipstick at the ready, anticipating her next opportunity to pounce and get a little satisfaction. She doesn't dare put anything to her lips unless I'm totally stopped for fear of wearing hot coffee or smearing makeup across her cheek as I accelerate.

Eve asked me to take her out for a practice drive yesterday and I was laughing as I told her how Lola yells at me every morning, saying, "Mom! Seriously! Just stop already, would you? Quit slowing down!"

I explained the game I play and Eve's hands squeezed the steering wheel hard, her knuckles turning white. She slowly turned her head toward me.

"That's why you always freak out when I stop at the last minute behind another car, isn't it?"

"Hmmm. Oops....  Sorry."

"Geez, Mom. Not everyone drives like you. Maybe nobody."

She might have a point there. When I think about it (which, frankly, I never really did before now), it's pretty obsessive and more than a little weird.

I wonder what other things I do without realizing that they are odd.
I suspect I'll figure them out as the girls get older.
Crap.

Wednesday, May 11, 2016

Two Reasons I Think Single-Payer HealthCare Needs to Happen

Warning: Rant coming in 3, 2, 1

There have been times in my life when I have been so f%*king DONE with our country's convoluted system of healthcare that I wasn't sure whether to cry, throw myself on the floor and pound my fists until they're black and blue or scream bloody murder from the highest peak I can find.

I know lots of folks who can relate.

Seriously. Socialized medicine, folks. I mean it.

I know it won't make everything easy-peasy, simple and clean, but it can't make things worse.

When I went to college, I was determined to become a pediatrician. That's all I had wanted to be since I was in elementary school and I could see it happening. I took organic chemistry, cell physiology, medical ethics classes. I struggled with some more than others, but I loved them all. My senior year, I studied for and took the ridiculously long MCAT and spent hundreds of dollars applying to medical schools and then decided to take a year off to work in the field before deciding whether to go ahead and go.

I ended up working for several years as a surgical assistant for a small group of doctors and I learned about the other side: the business of medicine. I hung out with the business manager and discovered how to tweak our diagnosis codes and pore through the (then) printed catalogs of allowed procedures to bill things so they would get paid for. When patients came in for emergency surgery, after the OR was scrubbed of blood and every last instrument was cleaned and put in the sterilizer, we convened for a quick meeting to determine just how to position the procedure to whichever insurance company might be involved so that we could have a higher chance of being paid. This not only determined which codes we used to bill, but it often meant that the doctor had to dictate his notes in a particular way so that, in case the insurance adjuster (not a physician or a nurse in most cases) asked for them, they would fully support the billing we submitted.

During those years, I discovered that if what I truly wanted to do was build relationships with patients that impacted their lives and their health, going to medical school was not the way to do it. As the surgical assistant, I spent more time with the patients than anyone - pre and post-op - and heard about the other things going on in their lives as I changed bandages and removed stitches. The doctors, while they may have liked to have more time to spend with patients, spent the majority of their time maximizing insurance payments by dictating notes, seeing a ridiculous number of patients per day, scheduling back-to-back surgeries to maximize OR usage, and occasionally getting on the phone with an insurance company who was refusing to pay for more than two scalpels or two hours of anesthesia to defend their choices.

Needless to say, I chose not to go to medical school.  And in the next several years, I spent time fighting with insurance companies for a physical therapy business, a dermatologist, and the state mental health division, not to mention myself and my family. I learned just how insurance companies make rules that increase their profits and narrow choices for their customers. I discovered that the high-level relationships that are made between drug companies and major hospital groups and insurers almost never benefit the health or wellness of a customer unless it happens to be in alignment with the bottom line of the companies involved.

A few weeks ago I called a doctor's office for a family member to get diagnosis and procedure codes for an anticipated surgery. I then called the insurance company armed with information to ask whether these codes were considered covered procedures. After nearly an hour on the phone I came away with a vague answer that included information about the deductible and the potential coverage depending on a number of variables over which we have no control.  If the doctor is "in network" (he is), his services are covered at X%. If the hospital is "in network" (they are), their nursing and OR services are covered at X%, as long as it is a day-surgery. Overnight stays are covered at X-Y%. If the anesthesiologist is "in network" (we have no control over that and no way of knowing until the day of the surgery who that person might be), their services are covered at X%, but if that doctor is "out of network," services are not covered at all. Not only that, but on "out of network" providers, the amount the patient pays is not applied to the deductible or the out-of-pocket maximums for the year (presumably because we had the audacity to go rogue - even though we have no choice in the matter). There are further decisions about OR supplies (one would think that those would be considered part of the surgery facility charge, but, no, it seems they are billed separately), so if the surgeon chooses a more expensive bandage or stitches, it is likely those won't be covered at all.  I could go on, but you get the gist.

This morning, I phoned our dentist's office to discuss a particularly high bill we received and after another hour of talking with them and the insurance company, I was told that Lola's emergency dental procedure last summer while we were on vacation was not only not covered (out of network), but none of the $500 we paid for it were applied to our deductible (out of network). I calmly asked the representative,

"So, this was literally an emergency. As in, the plane touched down, we stopped at the pharmacy to get pain killers for our daughter, and as soon as we hit the hotel we asked the concierge to recommend a dentist who could see her ASAP (Saturday morning in Hawaii). First of all, does your insurance company have in-network providers in Hawaii? And if so, am I expected to call all of the islands to find one who happens to practice on the weekend and is willing to see my daughter? Is that a thing I should have done?"

"No. It's not a thing," he says.

"Explain that to me, please."

"Was it a medical emergency? Because if it was, you should have run it through your medical claim instead of dental, and then it might have been covered even if it were out of network. But it wasn't, and it's too late now. It was processed as out of network and that's how it's going to stay. And, no, we don't have any in-network providers in Hawaii."

So, ultimately, it's my fault that I didn't sell it as a medical emergency? Or is it the dentists' office fault? The dentist who got up on a Saturday morning and spent three and a half hours with Lola patiently tending to her and then calling us that night to make sure she was ok.

And why wasn't my out of pocket amount applied to the deductible? Because we went rogue. Because we didn't follow the rules. Because, if it had been, the insurance company (Premera Blue Cross, btw) would have been on the hook for all the rest of the follow up procedures that have taken place as a result of this situation in the last nine months. But they aren't, because it all started with us needing dental care somewhere else in a hurry.  When I pointed this out to the representative this was his response:

"Well, you just really want to have your dental emergencies when you're at home. That's the best way to do it."

Duly noted.

Socialized medicine, folks. Single payer. The same rules for everyone.

Health care (even dental care). It's a basic need.

Monday, May 02, 2016

Diving In, Part 3: New Vaccines and Random Questions

Part 1 is here
Part 2 is here

I would like to go on record as saying that I don't think vaccines are a bad thing, in and of themselves. I do think that they have served an important function in our understanding and the prevention of many diseases. However, I don't think there is such a thing as a panacea, as much as we would like there to be, and over the past few decades, the medical-industrial complex has become so interwoven with the public health system that I'm not certain it is serving the people it claims to serve any longer.

One example of this phenomenon lies with the development of HPV vaccines. I wrote about this in 2013 here, detailing my issues with the vaccine Gardasil. Since that time, more countries have either banned or started investigating this particular vaccine because of the high number of adverse side effects, and yet in the US, our public health officials continue to advocate for its use within an even wider population. It is now recommended that boys have this vaccine and that all children have it starting at a younger age (an age at which NO trials have been done to determine safety or efficacy). If we were truly interested in long-term public health and not making money for pharmaceutical companies, we would proceed cautiously with this vaccine which has been shown to have some correlation with teenage-onset menopause and severe neurological issues.

Another example of the rush to develop vaccines that (I believe) are unnecessary is the chickenpox, or Varicella zoster, vaccine. Ours is one of the few countries that routinely and widely vaccinates our children for this disease that has not been shown to be deadly in the vast majority of cases. This article found at the National Center for Biotechnology Information illustrates the reason why, after much scrutiny of the matter, the United Kingdom does not push chickenpox vaccines on its children as a matter of routine. The conclusion of the physicians there was that there are two main areas of concern regarding this vaccine:

1. "...introduction of a routine childhood vaccination drives up the age at which those who are and remain non‐immune get the illness and chickenpox tends to be more severe the older you are,"

and


2. "...what will happen to the epidemiology of shingles if chickenpox vaccination is introduced in the United Kingdom?"


The answer to these questions from pediatricians I have taken my children to are as follows:

1. If your kids don't get the disease naturally now, because all the rest of the kids are vaccinated for it, they will more likely get it when they're older, when it is much worse, so they might as well follow the crowd and get the vaccine. What they neglect to mention is that the efficacy of the vaccine has been shown to be between 3 and 5 years, which means indefinite booster shots for the rest of their lives. And if they don't - say they forget for a year or two when they first move out (like in college, when they're exposed to tons of different infectious diseases), they'll likely get a horrible case of it. They also neglect to mention that, had we not developed this vaccine and given it so widely (as opposed to just kids who are immunocompromised or otherwise indicated to have it), we wouldn't have the issue of kids not getting it naturally. 


2. There's a shingles vaccine. Don't worry. Great, so now, on top of the multiple chickenpox vaccines my kids will be getting for the rest of their lives, they have to get shingles vaccines? 

If you're a pharmaceutical company, you've created a solution to a problem that didn't really exist. But with the CDC on your side, you are guaranteed to have a captive audience for your vaccines for years to come. And in my state, physicians are given financial incentives (higher ranking with Medicaid and state insurance programs as well as payment) if they have a significant percentage of their patients who vaccinate fully. Thus the pressure I get every time I take my kids to the doctor for a check up.



It seems that, in the UK, they have decided to be more conservative with their recommendation and follow the research instead of the money. Interestingly, it turns out that in households with children who acquire chickenpox naturally, there is a smaller incidence of shingles. What that means is that there is likely a protective factor against shingles for adults living with children who have naturally acquired immunity to chickenpox. 
So, why the development of the chickenpox vaccine? Previous to the development of this vaccine, fewer than 100 people per year (out of 4,000,000 who contracted the disease) had complications that led to death. One hundred people sounds like a lot, but that is 0.0025% (or 0.000025) of the people with the disease. And the rest of those people had not only naturally acquired immunity, but some protection against shingles as adults. The normal lifetime risk of getting shingles is 10-30%, but the UK researchers noted that, with a chickenpox vaccine program, the incidence of shingles rises 30-50% until everyone is vaccinated, which could take decades. 


In my opinion, this particular vaccine has become a boon for pharmaceutical companies despite the fact that it protects very few people from the serious side effects of childhood chickenpox and instead, opens up an entire generation of young adults to risk for adult chickenpox infection and future shingles. If you add in the risk associated with multiple vaccines (some reported side effects of the Varicella vaccine include shock, seizures, encephalitis, thrombocytopenia and Guillian Barre syndrome), you're looking at a lifetime of risking your health again and again versus the risks associated with acquiring chickenpox naturally and suffering it's side effects.


Back when vaccines were first developed, they were designed to combat highly infectious, deadly diseases, and they were mostly developed by pure scientists who had little financial stake in the outcome. These days, pharmaceutical companies who are concerned with their stakeholders' satisfaction commission their own scientists to create vaccines that may or may not be immediately necessary (the "fast tracking" of Gardasil is one egregious example of a corporate push to market that was altogether unnecessary) and gradually increase the population and number of boosters that are given, continually growing their market share. Until we can be assured that the entities who are recommending the vaccine schedule have no conflict of interest and have done truly independent studies on safety, efficacy, and necessity of each and every one of the vaccines on our current US schedule, it is unfortunately up to the consumer to advocate for themselves, their families, and follow the money. 





Thursday, April 21, 2016

Diving In, Part Two (Or, Why the Vaccine Debate Isn't Cut and Dried)



In case you missed, it, Part 1 of my writing on vaccines in the US can be found here.


I suppose that, like most other very controversial subjects, it shouldn't surprise me that the vaccine debate tends to get framed as an all or nothing, black and white, choosing sides issue. Whenever we are driven by fear, human beings tend to lose the ability to think rationally and begin to believe that there is a Right and a Wrong answer, and the question of whether or not to vaccinate can certainly be a fearful one.
I do continue to be mystified, however, by people who should know better - public health officials and medical practitioners, for starters - that position vaccines as an all-or-nothing proposition, and here is why:
Vaccines are not all created equal. Accusing me of being "anti-vaccine" because I am concerned about the safety and/or efficacy of some vaccines or the current US vaccination schedule is akin to saying I am "anti-car" because I wouldn't consider driving a Volkswagen but I might choose a Toyota.
  • There are a vast array of vaccines available, some of which were created decades ago and some that are fairly recent. 
  • Some vaccines on the market are multivalent (that is, they are designed to inoculate against more than one disease-causing organism) and others are monovalent (for one organism only).
  • Some vaccines were created to work against bacterial disease and others were designed for viruses.
  • Some vaccines contain adjuvants (chemicals that are supposed to increase the body's immune response to create stronger immunity) such as aluminum and others do not.
  • Some vaccines are designed to be injected once in a person's lifetime and others require multiple boosters in order to maintain a high level of immunity.
  • Some vaccines contain inert ingredients derived from animal parts, others from human fetal tissue, and things like MSG (monosodium glutamate).
  • Some vaccines have been tested many times over a long period of years on individuals of all ages, genders and races, and others have been "fast-tracked" which means that there was a determination that there was some public health risk that necessitated them getting to market faster, so there hasn't been the same rigorous level of testing. 
I could go on, but hopefully it is imminently clear that the vaccines Americans are encouraged to give their children (and have themselves) are very different from one another. Much like buying a car, it is important to do research on each individual vaccine in order to determine a risk/benefit ratio and decide what is comfortable for you. For example, when my daughters' doctor recommended the chickenpox vaccine for them, I researched it as thoroughly as I could and ultimately chose not to have them get those shots because I felt as though the risks outweighed the benefits. Similarly, they have not had the HPV vaccine and I don't foresee either of them getting it anytime soon. (If you're curious about why, you can read this post particular to the Gardasil vaccine. Since I wrote it, there has been a great deal more information published by other people who are critical of both Gardasil and Cervarix that shouldn't be difficult to locate online.)

Please don't think that I am under the impression that doing research on the safety  and efficacy of individual vaccines is a simple endeavor. I am fully aware that it is not, and I know how lucky I am to have both the time and the educational background to locate, digest, and mostly understand the data. Many, many people are unable to do what I have done, and the system is unfortunately not set up to support any kind of patient education regarding vaccines or any other pharmaceutical, for that matter. Many vaccines are available through drugstores and grocery stores in America, which makes it a challenge to have an in-depth conversation with the provider regarding risks and possible complications. Even if you go to a physician for vaccines, many of them aren't as well-informed about the individual attributes of each vaccine as they could be, and a great deal of them are unwilling to have a candid conversation about the ingredients of individual vaccines. In a perfect world, the person who is recommending that you inject your child with something would have looked at the studies done on that drug to determine whether or not it is a good idea, but the amount of information is incredibly huge. The doctors I've met are content relying on the word of the CDC that vaccines are safe, but because these drugs are created and sold by massive corporations who may or may not be interested in the greater good of public health, but who are nevertheless incentivized to create a product that they can bring to market quickly that will produce enormous profits for their shareholders. In turn, these corporations use that money to lobby lawmakers who wield a great deal of power over government agencies responsible for determining whether these vaccines are safe and effective and when they get to go to market, as well as recommending where in the vaccine schedule they ought to be placed. There is a very clear conflict of interest for many physicians and scientists working on vaccines who are being paid by large pharmaceutical companies to create new vaccines. And, in many states, regular family physicians are paid by the state to give patients vaccines, so the more children they inoculate, the more they are rewarded. 

Ultimately, this issue is much more nuanced than many of us would like to believe, and because it is so complicated, we often fail to have productive conversations about it. In my heart of hearts, I believe that we are all striving for a country with healthy children, but if we are going to get there, it will, at some point, mean that we sit down together without fear or anger or labels and get everything out on the table with that singular goal in mind. 









 

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 http://www.cnbc.com/2015/03/03/globe-newswire-public-health-officials-know-recently-vaccinated-individuals-spread-disease.html 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. 

Sincerely,

Kari O’Driscoll
Related Posts Plugin for WordPress, Blogger...