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 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

Wednesday, April 06, 2016

Talking To Kids About Sex (With Visual Aids)

This is a response to Elizabeth's comment on the previous post about sex as a commodity, and I will preface it by saying I wish I had a definitive answer. She asked how I would educate my sons about sex and rape culture if I had sons, and I think it is a particularly salient question. I thought about it in the context of my brothers and my dad, but my teenage years were a different time. Not that there wasn't a hearty dose of misogyny and male entitlement, but it wasn't talked about at all, and rarely was it ever challenged.

After puzzling on it for a bit, I went to a source I trust: Lola. As a 13-year old girl who is proficient in social media, steeped in girls' empowerment, and has a strong, vocal opinion on social justice, I was interested in her ideas about how to talk to teenage boys about rape culture.  She started out by encouraging parents to watch this YouTube video about consent with their kids. All of them, boys and girls, starting at a pretty young age. It's a pretty powerful analogy and points out just how absurd our ideas about sexual consent are.

I love this video because it doesn't avoid the idea that a person's consent status can change at any point. Yes, it is possible for someone to say "yes" and then change their mind, two or five or twenty-five minutes later. And no matter when it happens, it's valid. I've talked to my kids about the concept of the Least Common Denominator (don't let your eyes glaze over - this has nothing to do with math). That means that the person who is the least comfortable gets to make the rules. The lowest threshold for sexual intimacy is the trump card. So if I really want to have full sexual intercourse but my partner just really wants to make out on the couch, we stop there. Period.

The second point Lola said was important to share with teenage boys is that, even though they may not have personally done anything to make a girl feel uncomfortable, rape culture means that in many situations, we just are.  Even I, in my mid-40s and fairly fit, am always nervous when I get into an elevator with just one other person who is male. Always. That is rape culture. Rape culture is me not feeling comfortable getting into an Uber or a Lyft by myself with a male driver. Chances are, he is a nice guy who will pick me up and take me to the destination I requested without any detours, but rape culture means that I am acutely aware at all times that I lack power - and therefore physical autonomy - until I get out of the car.  And rape culture also means that I often suffer through comments on my physical appearance and speculation about what I might be going out to do (often with lewd body language) and don't speak up because it might anger the driver and then I'm screwed. Lola said she would want boys to know that these kind of experiences happen daily to girls and women, even if they themselves aren't perpetuating it. She wondered if they might be willing to imagine what it would be like to be constantly on guard, wondering if the next guy who spoke to you would try to do more than speak.

We ended up having a conversation about street harassment and she cracked me up when she said, "They should know that girls and women don't get dressed in the morning so that they can go out and get comments on their appearance from total strangers. Ever. That's not a thing." Even if guys think it's totally innocent or a compliment to tell someone how they look, it ultimately makes women and girls feel unsafe simply walking down the street.  This video is a powerful one because it is a small sampling of what many women experience on a daily basis as they go about their business. And the irony is, no matter how she was dressed, if she had been accompanied by a man her age or older, none of that would have happened.  Nobody would have commented on her appearance - some out of fear of the other man, and some out of respect for him. But none of them out of respect for her. And that is rape culture.

The fact is, as I wrote in my last post, in our culture sex is often about power, and those who are born with more power are the ones who often make the rules about sex. Frankly, the most impactful thing I've been able to do when I'm having a conversation about sex with my girls is to listen. I like to think that I'm fairly plugged in to pop culture, but I know that there is a lot that goes on that I don't see. And I've discovered that if I listen without judgment, my kids actually first love to shock me with the tales of goings-on in their world, and then feel like they can dig a little deeper and think about how all of it makes them feel.  I have also discovered that talking about sex and sexuality in lots of different ways - commenting when we're watching a TV show together or when I hear a story on NPR with them in the car, showing them a video like the ones in this post and watching for their reactions, or slipping this letter under someone's bedroom door - gives us opportunities to continually explore and challenge the ideas we have about sex.

Elizabeth is right. Talking to our kids about sex is incredibly hard. Sometimes they get annoyed and don't want to talk (or listen). Sometimes I'm not the best at explaining something or helping them understand where I'm coming from. Sometimes I'm not good at listening without judgment. But the most important thing I ever did for my girls was to let them know that I'm willing to keep trying. That they can come talk to me about hard things whenever they want to and that I will bring tough subjects up from time to time and ask them to indulge me. Because if we as parents don't work to counter the basic themes about sex that our kids get from school and the mass media, nobody will.

Monday, April 04, 2016

Sex and Sexuality: We Can Do Better

Jon Krakauer's Missoula: Rape and the Justice System in a College Town
The New England Prep School rape case
Peggy Orenstein's latest book, Girls & Sex
Sex trafficking rates skyrocketing
The advertising phrase (and perhaps its most bedrock belief) "sex sells"

I could go on, but I think you'll get the point. I've written here many times about rape culture and Sex Ed and I have very, very strong opinions, both as a sex assault survivor and as the mother of two daughters. But more than that, I am concerned for the way our entire culture treats the topic of sex because I think that from a very young age we are taught that sex is, first and foremost, a commodity, and secondly (sadly, a distant second for many, many people), an act of affection and/or love between individuals.

Long before most parents even consider broaching the subject of sex and sexuality with their children, they are bombarded by slick magazine ads, television shows, movies, and books that depict sex as a commodity, as something that we all ought to want and that we can buy our way into. There are many young people who are taught by older children or adults that their sexuality is something that can "buy" affection or special favors. Parents who prostitute their children are not only profiting financially, but they are teaching their children that sex has power and if you want money - or if you have it - you need only sell yourself. Many teenagers, both girls and boys, have a deep understanding of sexual favors - there are those who purchase social capital by giving blow jobs or hand jobs to others and those already in power who cement their status by receiving those favors.

Even if these kids do get "Sex Ed" in school, it is largely mechanical in scope, outlining anatomical features and talking about how pregnancy happens and how to avoid STDs. By the time they are adults, very few of them have an understanding of sex as something that is theirs to define - that they have every right to engage in it with an expectation of pleasure as opposed to some "reward." Our American notion of "sex" is a very transactional one that is often one-sided. By the time we have the courage to really talk to our kids about sex (if we ever do), there is so much damage to undo that it feels overwhelming. And for children who learn early on, through abuse or sex trafficking, that sex is a tool, it is possible that their fundamental understanding of this act that is supposed to make their lives more whole has been forever damaged. How do you undo the notion that the person with more (power, control, money, status) has the right to obtain sex from the one with less when that is what you are shown in so many different ways over and over, nearly from the time you were born?

When girls are raised with the idea that their power lies in their ability to grant or withhold sex (the most egregious example of this I've heard of recently was Spike Lee's latest movie Chi-Raq), it is damaging to their ability to see sex as something that is more intrinsically rewarding. When they are surrounded by images of women who are sexually provocative and who are praised for it (Kim Kardashian's nude Instagram photos, anyone?), they are taught that sex is a tool, and that it ought to only look one way or it isn't right.

When boys are raised with the notion that the more sex they have, the more masculine they are, it is equally damaging. Because, in our culture, they are born with more power at the outset, when they are presented with the idea that sex is a commodity, it isn't much of a mental leap to imagine taking sex when they want it, simply because they can. When we set sex up to be about power, we can expect rape to follow along shortly. When business lunches are conducted in strip clubs and sex trafficking rates rise sharply during the Super Bowl, you can be sure that we have embraced sex as a commodity.

The question is, are we willing to live with the consequences of that or can we start talking to our young people about what else sex might be, instead?
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