Are We at War? The Vaccination vs. Anti-Vaccination Situation

http://www.egmnow.com/platforms/

In light of the current measles outbreak, I'd like to take a moment to reflect on the tremendously divided nature of the vaccine debate (or lack of debate) that exists in our country. It feels eerily similar to the Red vs. Blue State divide that has plagued us now for several decades. In both conflicts, there exists such fear, such misinformation, such geographic isolationism, such supreme sensitivity, and such a lack of communication that we simply stand opposed to one another without any productive conversation. I'm afraid that if we never come together to talk about these things, we'll make no progress.

 And, like many, I'd really like to see progress.

Let me out myself first: I am pro-vaccine. I come to the table with a very strong opinion that vaccination is a good thing. My son is uber-vaccinated-- because we have traveled extensively since he was an infant, he had early vaccines for measles and hepatitis A and is even vaccinated against yellow fever and typhoid. Just this week, he had his kindergarten boosters. I always get the annual flu vaccine, and though I am not convinced the data on pregnant women getting a whooping cough vaccine in the third trimester is that robust, I pulled up my sleeve and ceded to vaccination just last month-- trusting that the risk is minimal. I'm a public health enthusiast.

All this being said, I work intimately with hundreds of families who believe otherwise-- and I don't only work with them, I love them and care for them, and counsel them.

As a family doctor caring for a population who chooses overwhelmingly to make alternative vaccine choices, I often find myself in the uncomfortable place where the two worlds collide. And while I consider myself a  vaccine believer, I also find myself intensely offended by the denigrating tone so many take with people who choose to make the choice NOT to vaccinate. Perhaps it's because I know them personally. And I know that they want what we all want-- what's best for our children. It's just what's "best" may not be so black and white for some as those of us believers want to believe.

I also know that berating parents for the decisions they are making for their children is unlikely to change their minds.

After all, what was your response the last time you were berated?  Did you say, Hey thanks for calling me uneducated and stupid and ignorant. You are soooo right, let me reverse my entire decision-making process and go with yours?

Doubt it.
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Vaccinators (of which I consider myself one) are those I will call "vaccine believers". That doesn't necessarily mean we believe in God, Santa Claus, or the Republican Party. In fact, a large proportion  is made up of  liberals and skeptics: academics, journalists, returned Peace Corps Volunteers, scientists, and scholarly folk. But vaccinators are a mixed bag: we also include immigrants, the urban poor, and others who either aren't empowered enough to question authority or those who have personally experienced vaccine-preventable disease. Most believers have never read a book or a study about the safety of vaccines-- even the scholarly subset. They don't need to. They take the recommended schedule (available here), follow it like a road map, and trust in the integrity of the institution of medicine and the wisdom of their predecessors. Both instill in them a steadfast trust in the value of vaccines. Perhaps most importantly, believers are descendants of vaccinators. Their perception of risk is reinforced by the community in which they live and by stories of vaccine-preventable illness.They may have traveled to a country where they have seen victims of polio or meningitis. They may be from one of those countries. Or maybe not. They don't harbor suspicion about the morality of governmental recommendations-- in fact, they trust and embrace both the integrity of science and the righteousness of health policy-makers. They do question the morality of people who choose to put communities at risk for their own personal interest.

Anti-vaccinators are those I will call "vaccine atheists".  Again, this designation has nothing to do with religion-- in fact one of the largest outbreaks of measles prior to our current one involved an enclave of orthodox Jews in New York who were choosing not to vaccinate based on religious teachings (see report here). I'm just borrowing recognizable terminology. Where I live, most anti-vaccinators are not particularly religious, though many would call themselves "spiritual". Like believers, atheists are a mixed bag: some are quite educated, others are not. For a range of reasons-- I'm not always sure why-- they do not fear the diseases that vaccines are targeted to prevent. They don't believe in the inherent value of immunization-- and they believe that the potential risks of said vaccines are more likely and more dangerous than the diseases themselves. Just like believers, most vaccine atheists have not extensively read books or studies about the safety of vaccines. They, too, don't really need to. They know vaccines carry risks, and they choose not to chance those risks. Their perception of risk is reinforced by the community in which they live and by isolated reports of horrible outcomes after vaccination. Some specifically fear autism, but for most, the theoretically risks are much more complex. Importantly, most are descendants of non-vaccinators. They look at the CDC recommendations and scoff at the ridiculous number of immunizations recommended. They know that there is always uncertainty in any medical intervention, they wonder what the actual risk is for their child, and they question both the science and the moral integrity of those making official recommendations.

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So, you see, there might be more similarities between the two groups than we might have previously guessed. We are all products of our upbringings. Neither side has read much. Neither can quote validated data. We both dig in our heels and hold our positions. And thus we quickly forget that we share some commonalities-- namely we live on the same planet and maybe even next door to each other, and we should be TALKING to each other.

Here's what I propose we talk about:

1) Fear
Vaccinators fear vaccine-preventable disease. They do not want measles, influenza, meningitis, or polio to be running around our country (and our world) infecting vulnerable children or frail adults. They do not want to return to a place where people die or are disabled from vaccine-preventable illness. Vaccinators also fear that decisions of others not to vaccinate put their children at risk. I get it.

http://wrightliving.com/fear-feel-alive/

Anti-vaccinators fear side effects, preservatives, chemicals, and immune loads. They fear the unknown. And they fear these more than the risk of illnesses that most have never seen. They do not want to expose their children unnecessarily to toxins that may put them at risk. Vaccinators may dismiss these fears-- citing examples of millions of children who have received such toxins without untoward side effects-- but in so doing, they neglect to validate that science is terribly imperfect, that in fact, scientists have frequently historically reversed themselves on interventions once deemed safe and necessary.

Let's talk about what scares us, why it scares us, and see if we can find some common ground. Let's talk about why some are afraid of the diseases and others of the vaccines. Let's see if we can reasonably sort out what we should be afraid of. . .and which fears we can probably set aside.

2) Misinformation
This is the trickiest for me-- as a scientist, doctor, and general book nerd, I love reading the data. My patients will tell you that a most common phrase out of my mouth starts with, "Studies have shown. . .". followed up by some really cool meaningful information that helps back up my recommendation.

http://ninapaley.com/mimiandeunice/2010/09/17/misinformation/

And yet, as I have tried to find good information for my patients on the topic of vaccine safety, I have been terribly unimpressed-- by both sides of the topic. Most of the educational materials the CDC publishes is watered down, does not directly address my patients' specific concerns, and basically ends with "trust us". Now, I do trust the CDC, but not everyone does, and I can understand why. The CDC material often feels dismissive and, frankly, a little bit lacking. That being said, I find that most of the anti-vaccine material is inflationary and based in paranoia and fear rather than compiling what limited information is available. I have ordered at least half a dozen books to read on the topic and been thoroughly unimpressed by most of them.  For my vaccine skeptical families, I find myself recommending "The Vaccine Book" by Dr. Sears, which is imperfect but seems the best marriage of the two-- if you have other recommendations, please do let me know.

Let's talk about where you get your information. I'm curious. Can you please share resources you have found helpful? What about some that are unhelpful? Who do you trust? Why? Why not? What makes information trustworthy? What makes it untrustworthy? How much weight does anecdote carry in your decision making? What about a large population study? What can I do as your fellow human to make information feel more helpful?

http://www.washingtonpost.com/blogs/wonkblog/wp/2015/01/27

3) Geographic isolationism
Just like red versus blue, carnivore versus herbivore, and God versus not-God,  we humans tend to surround ourselves with people who have similar thinking and similar modus operandi. Research shows that differences in vaccine uptake are extremely geographical, which literally means that our neighbors reinforce whatever set of beliefs we tend already to have. When we geographically isolate ourselves, we conveniently reinforce our own beliefs (right or wrong) and protect ourselves from intelligent conversation that might challenge those beliefs. And in this way, we don't encourage ourselves (or our counterparts) to develop intelligible and meaningful responses to real and important questions. For example, why are some people so scared of preservatives in vaccines and others aren't? Why are some people so scared of vaccine-preventable illness and others aren't? Why might someone you love and respect make a totally different decision about something you find morally reprehensible? Shouldn't we know the answers to these most basic questions? . To get answers, though, we have to ask. And to ask, we have to not only come into contact with but also feel safe in the company of those who might think differently than us.

Let's reach across the aisle and be curious (and I mean non-judgey curiously curious) and cross over the line every once in awhile. We might be surprised to find ourselves more educated because of it-- being curious with my patients has certainly led me to read more and understand more what people are afraid of. And my patients being curious about my thoughts has hopefully helped them make informed decisions.

4) Sensitivity
Even in my own social circles, I have found the topic of vaccine choices to be off limits in mixed company-- other than in my exam room where I have some say over what conversations are cultivated. Living in Sonoma County, I am well aware that I am often in mixed vaccine company, and as a mother, I wouldn't touch the topic with a ten foot pole. Immunization in my town is right up there with super stigmatizing topics: how much money your family makes and whether you do crazy things in your bedroom. Rather than friends and family being a safe venue for intelligent conversation, I find that people are so sensitive about their choices (in both directions), that we're afraid to ask. In fact, I was out for coffee with a doctor friend just this week, and he casually inquired about another doctor friend's vaccination views. He knew my perspective and felt safe asking me about me, but had never discussed the issue with her, knowing it could get sensitive fast. This returns me to the important notion that we are so influenced by what is happening in our community, so that even people I might consider vocal vaccinators find themselves silenced. I am supremely aware that I may isolate and offend my patients if I simply try to bulldoze them with personal opinions-- I believe it is my duty as a physician to be sensitive to their vulnerabilities and present the topic in a loving and respectful manner-- even (or maybe especially) when I disagree.

Can we lower our own sensitivity about decisions we make for our families and temper our defensiveness so that we might have meaningful conversations on the topic? What might those conversations look like in a non-judgmental space? Might we find some more middle ground?


5) Lack of communication
Communication, of course, involves all of the above issues already mentioned and so much more. And while I personally feel strongly that my own children be fully vaccinated for their well-being as well as the well-being of our community, I am utterly turned off by the general blasting of non-vaccinators. It simply will not work to scare or judge or berate parents into making different choices. It won't work. This is not a war. This is not really about me versus you. This is an opportunity to engage in meaningful conversation about true risks of real disease and true risks and benefits of vaccine, true fears and true needs of parents to do what is right for their child AND for public health and feel comfortable doing so.

Do me a favor, and cool your jets. Ask someone you know and love but that you assume has a different opinion than you on the vaccine matter to share their reasoning. Listen. Discuss. And then share yours. Then listen some more. You might be surprised about what may come out of such a conversation. You might learn something, you might teach something, and we may all be grateful for the step forward.

Choice, Catholic health care, and tubal ligations

Let me tell you a bit about two patients from my practice
The first is a 37-year-old woman pregnant with her second child. Her husband is disabled, and she is the family's primary bread winner. She planned this pregnancy, and as soon as she discovered she was pregnant, she felt confident that her second baby should be her last. She shared this with me early in her prenatal care and, as such, signed her 'tubal papers' (a consent for permanent sterilization, which, by Medicaid rules must be signed at least 30 days before a woman's due date). Though she received her prenatal care at our health center, she was an employee of the local Catholic health system, and to avoid a large out of network co-pay, it made financial sense for her to give birth at the Catholic hospital. She was warned by several of her coworkers that the Catholic hospital "wouldn't let her" have a tubal ligation. They were, indeed, correct. She did not get her surgery.

The second is a 32-year-old patient pregnant with twins-- she has a four year old at home. Because of her twin pregnancy, after the second trimester, her care was transferred to a local obstetrician for care. The health insurance that she received through her work also limited the choice of hospitals in which she could deliver-- she, too, had strong financial incentive to deliver at the local Catholic hospital. She knew there was a moderately high likelihood she would have a cesarean section and asked the physician managing her care for a tubal ligation if that were to occur. The physician actively discouraged this, urging her to "wait until the boys are born to make sure they are okay." She was never educated about any Church policy that might be an impediment to getting the procedure. She did, indeed, have a cesarean section. She did not have her tubes tied.


Choice
I use the word choice a nauseating number of times per day with my three-year-old. The choice of  socks or no socks, bike or stroller, carrot or cucumber, book first or bath first. "You choose", I tell him. In so doing, I engage that age-old parental trick of controlling the number and quality of choices he has and simultaneously encouraging him to share the power in decision-making. It usually works.

http://marcellapurnama.com/why-we-are-afraid-to-make-a-choice/

The word choice carries both tremendous power and stigma in the world of health care. In fact, when I use health and choice in the same sentence, it's hard not to think immediately of the abortion-rights movement-- often referred to as the pro-choice movement-- which has worked tirelessly for the last fifty years advocating the rights of women to choose to terminate a pregnancy.

But there are a lot more choices in health care than those related to abortion.

"It's your choice," you'll hear me say a zillion times per day at clinic. Mammogram or no mammogram. One hour glucose test or two hour glucose test. Trial of anti-depressant or trial of therapy. Antibiotics or wait 24 hours. Pill-form or liquid form. Induction of labor or wait another week. Physical therapy or osteopathic manipulation. Fluoride supplement or fluoridated toothpaste. IUD or NuvaRing. "You choose."

While parental me is interested in maintaining supreme power over my preschooler, physician me aims to engage in a more mature version of shared decision-making with my patients. Here's my quadruple aim when guiding patients through medical decisions: 1) Educate them about their health condition, 2) Offer a range of effective management options 3) Share my own informed position on the issue at hand (i.e. what I think which are the most reasonable choices), and 4) Engage participation in deciding what best to do in their unique situation.

There are two reasons I believe in this way of interacting with my patients. First, there is hardly EVER one correct way to do things in medicine. And second, by engaging and empowering my patients, I am certain that I am helping them be healthier. I am giving them a sense of ownership over their health and their health care decisions. And I am offering them choice.

Sometimes this strategy fails miserably. I know I have fallen flat on my face when a patient looks up at me and says, "I don't know, doctor, just tell me what to do."  I sigh. And start again. And try to resist the urge to be a despot. (I save the despot role for after work when my son refuses to hold my hand crossing the street. Then dictator emerges in her full glory).

But most often (I think) my patients appreciate the process. After all, we are all senescent human beings with a particular understanding of what is happening in our own bodies, and when I am acting as a physician, I am not the end-all. I am an expert consultant. As I see it, my patients have come to me not necessarily for an unequivocal answer but for educated guidance. And, while I don't always know the answer, I can definitely guide!

http://www.lukechueh.com/paintings/black-in-white.html

Plus, there is too much grey in medicine to be that black and white.


It is within this construct of choice, that I sit down to write a short piece about the power of the Catholic health care system and women's access to tubal ligation (aka permanent sterilization, aka "getting one's tubes tied"). After all, choice is not just about a woman's right to choose to terminate a pregnancy-- thank goodness, in this beautiful smart savvy world in which we live, we have birth control!

Women can choose NOT to get pregnant in the first place. And these women can make that choice as a temporary one (e.g. choosing birth control pills or a Nexplanon) or as a permanent one (e.g. choosing tubal ligation for themselves or vasectomy for their partners).

Women need to be aware of their choices.

The Catholic health care system serves 1 in 6
The Catholic health care system serves one in six patients in the US. There are approximately 620 Catholic hospitals in the US, comprising 12.4% of all community hospitals, with a particularly heavy presence in rural areas In fact, one-third of these hospitals are located in rural areas-- important because they may be the only reasonable choice for patients, particularly those with transportation challenges.

Here in California, Dignity Health (formerly Catholic Healthcare West) is the second largest hospital system, following Kaiser. Sutter is number three. If you combine St. Joseph's Health (also Catholic), then Catholic hospitals serve the largest quantity of California patients at 11.6% of all patients. And where there are hospitals, there are affiliated clinics and practices, bound by the doctrine of the leadership of those hospitals.

I do not doubt that these hospitals and the people who work within their walls provide excellent care to patients. In fact, last year, I visited a very ill patient of mine at our local Catholic hospital many times and was consistently and thoroughly impressed by the upkeep of the facility, the skill and kindness of the staff, and the quality of care he received.

However, as an advocate for women having an empowered choice in how they control their fertility, there is are some obvious problems. As policy, Catholic hospitals are not permitted to permanently sterilize, and yet, most facilities don't openly share this policy with the very women who are asking for these services.

It is unspoken. And choices left unspoken are not choices at all.

The Ethical and Religious Directive (ERD)
Women utilizing a Catholic-affiliated health care system should know that national Catholic hospital policy directly prohibits tubal ligation.

There is a document produced by the Catholic Church (United States Conference of Catholic Bishops) called The Ethical and Religious Directive for Healthcare Services (ERD). The ERD has been around for over 60 years and has two aims: 1) "to reaffirm the ethical standards of behavior in health care that flow from the Church's teaching about the dignity of the human person" and 2) "to provide authoritative guidance and instruction on specific matters related to the provision of health care".

These Directives are for all people participating within a Catholic health care institution, from administrators to individual providers to patients.

The fifth edition of the ERD was published in 2009. There are 72 directives in the ERD, with topics ranging from birth control, to end of life care, to abortion. Within these directives, the ERD specifically prohibits contraception, direct sterilization, and abortion in Catholic health care facilities (ERD #45, 52, 53). ERD 52 states the following: Direct sterilization of either men or women, whether permanent or temporary, is not permitted in a Catholic health care institution". This includes situations in which future pregnancy might endanger the life or health of the mother.

According to church rules, health care facilities must adopt these directives as policy and require adherence to these as a condition for medical privileges and employment. Theoretically, hospitals could be closed and providers could be fired for providing these services. In fact, in one study 52% of obstetricians who practice in Catholic hospital environments complain of conflict over religious-based policies (see article here).


I am quite certain that most Catholic hospitals and those who work for these systems do not openly share these directives when patients request specific services. While the ERDs are readily available online, they are not advertised on our local Catholic hospital website. In fact, no mention of permanent sterilization (yea or nay), birth control, or the ERD can be found on their website.

Okay, so is it true that no tubal ligations happen in Catholic hospitals?
Definitely not true.

In fact, when I started considering this topic, one of my co-workers spoke up defensively, arguing that she didn't think there was a problem-- in fact, she had had a her tubes tied at the local Catholic hospital a few years back without any issues. After the birth of her second child, she had asked for a tubal, been counseled appropriately by her physician, and it had happened. No biggie.


In the course of my research, I came across a Catholic epidemiologist's dissertation titled "Appeal to Conscience Clauses in the Face of Divergent Practices among Catholic Hospitals" about permanent sterilization practices in 176 Catholic hospitals in 7 different states across the country. In this report (which you can find here), the author found that 48% of Catholic hospitals in the US actually did perform tubal ligation between the years 2006-2010, for a total of 20,073 direct sterilizations in violation of the ERD.

According to this data, in 2007, 2008, and 2009, a total of 92, 91, and 66 tubal ligations respectively happened at our local Catholic hospital.

Interesting.  While almost half of Catholic hospitals are not adhering to the ERD by performing at least some number of female sterilizations, the other half  are not offering sterilizations at all. It's impossible to know what drives the uneven penetration of this policy.  Is this because of a difference in interpretation of the text? A divergence in opinion of relevance? Financial incentives? Lack of official oversight? Activist providers? Rebellious administrators? Changing times?

And here's the big problem, as I see it: while this data confirms that some women being attended to in Catholic hospitals get sterilized, it doesn't address the question of how many tubal ligations requested and/or desired by patients did NOT happen.

There is no way of knowing exactly why these 249 women (including my co-worker) were permitted sterilization, while others (including my two patients mentioned at the start of this post) were not.

Is it that certain providers within the system directly disobey the directives? Is it that exceptions are made for specific women or groups of women? Is it an administrative decision? Is it different if a woman insists?

Is it okay for entire hospital systems, physicians, clinics to mislead their patients?
Studies show that 31-47% of women requesting a postpartum sterilization don't get one. One study reported that 47% of women who requested but did not get tubal ligation in the postpartum period became pregnant in the first year after giving birth (this compared to 22% of women who didn't request sterilization). Almost half! This reinforces the notion that these women are at particularly high risk for unplanned pregnancy.

Maddening.

There is almost nothing more frustrating to me as a women's health provider than a completely preventable unintended pregnancy! And, along the same vein, I cannot understand why the Catholic Church prefers to promote systems that increase the likelihood of a woman choosing abortion.

As a product of eight years of Catholic education, I am well aware that the Catholic Church maintains a plethora of policies with which I don't agree. And, please note, I am not arguing that Catholic hospitals should do tubal ligations. It's simply that they need to be honest; their patients need to know when effective family planning options are intentionally not being offered and/or when a request for one is diverted because of hospital policy rather than because of a patient's best interest.

I want my patients to know their full range of options, to be educated about where and how to obtain those options, and to have the opportunity to make smart, empowered decisions that positively influence their health and the health of their families.

What I am advocating for is transparency.

And choice.

And, please, fellow providers, if you are practicing in a system that has tied your hands, be honest with your patients and offer them exactly what you would want to be offered yourself: the opportunity to be their own decision-makers.


Additional Resources
http://www.thecatholicthing.org/columns/2012/sterilization-at-catholic-hospitals.html
https://www.osv.com/OSVNewsweekly/Article/TabId/535/ArtMID/13567/ArticleID/4274/Health-systems-involved-in-the-report.aspx
http://www.usccb.org/issues-and-action/human-life-and-dignity/health-care/upload/Ethical-Religious-Directives-Catholic-Health-Care-Services-fifth-edition-2009.pdf

http://www.ncbi.nlm.nih.gov/pubmed/22609017
http://www.washingtonpost.com/blogs/wonkblog/wp/2013/12/02/catholic-hospitals-are-growing-what-will-that-mean-for-reproductive-health/
http://www.catholichospitals.org/#Introduction
http://www.chcf.org/publications/2013/01/california-hospitals
http://www.americancatholic.org/Newsletters/CU/preview.aspx?id=240
http://wws.princeton.edu/news-and-events/news/item/medicaids-tube-tying-policies-roadblock
https://www.regonline.com/custImages/310000/316099/Forum2012%20Mon%20pres/06_RevisitingMedicalTubalSterilizationPolicy.pdf

Every Woman Counts

Maria is a very quiet woman. Una mujer muy tranquila.

I have never heard her complain. Not once. Not when I examined the drain left in the place where her left breast had once been, not when her eyebrows disappeared, not when her skin sloughed off in layers under the blistering burn of radiation. Never.

Most questions I ask her, even open-ended ones, are answered with a shy nod or a few soft-spoken words. She has a pursed smile and an awkward shrug of both her shoulders when she is uncomfortable. When I ask her how she is doing, she always has the same response, "Bien, doctora".  To call her understated is an understatement itself.

The day I met her--almost five years ago now--is an indelible memory-- one that will be part of my physician-consciousness forever. Maria walked into the residency training clinic where I was literally pretending to be a doctor and told one of the front office workers she needed an appointment. She was having "a breast problem". An astute receptionist picked up on the understated urgency in her face and stuck her in an opening in my schedule that afternoon. Maria waited for a couple of hours before she was finally roomed, and when I knocked on the door, I had little idea of what was on the other side.

After I introduced myself, Maria told me that she had un problema with her breast that she had been ignoring. She needed help. Her Spanish was a little challenging to understand, and as such, I wasn't quite certain exactly what she was trying to tell me. But when Maria lifted her shirt, it was clear to me that the "breast problem" was not something minor. The Spanish no longer mattered.

Breast cancer. Visible breast cancer. A terrible oozing mess of abnormal tissue, red and dimpled and irritated and just about the ugliest site you can imagine. Cancer that had grown from a seed much deeper in her left breast, enlarged slowly over time (probably years), and eventually eaten from its origins up through her skin-- until she could ignore it no longer. Cancer looks just like you might imagine cancer would look like-- hideous. Undeniably gross.

These are the reasons I imagine Maria ignored her breast cancer.

Initially, she didn't know what it could be.
After all, most of us haven't been to medical school. We can convince ourselves in the middle of the night that we have foot cancer only to discover with the sunrise that it's just a blister on our foot. Most of us also delay seeking treatment-- I am going on eight weeks of a tooth ache and still have managed to avoid making myself a dentist appointment to evaluate that ache.

She was taking care of her family and ignored her own needs in the context of her family's needs
After all, that's what plenty of mothers do on most days of the week-- you know who you are: you're the mama that should really work today out but instead you go to the grocery store to stock up on lunch materials for your kids. You should go get your pap smear but it's lower down on the priority list than taking Junior to soccer practice or to library reading time. You have been meaning to pick yourself up a few new pair of undies but always find yourself in the kids section of the store checking out the clearance items rather than in the hot mama sexy lingerie section.

Once it started to become more clear, she got scared.
Fear is a huge barrier for all of us. It's hard to understand the immense power of fear. I was speaking to a local breast surgeon last week, and she actually said "I liken women with open breast cancer tumors to situations where people need to drop children off in safe drop zones, no questions asked. It just seems to get harder and harder for women to access care as the cancer gets grosser and more obvious. I dream of having a sign on my door that says, 'Please bring your horrible tumor here. I promise I won't ask why you didn't come sooner."

She didn't speak any English. 
When is the last time you got on the phone with some bureaucratic agency (think DMV or your own dear health insurance company) to try to make yourself an appointment or clarify an oblique notice you got in the mail? You were probably on hold forever or stuck in some crazy bramble of phone-tree hell. Just imagine doing that in another language. Virtually impossible.

She had no health insurance
Fear of a diagnosis is one thing, fear of a medical bill is an entirely other beast. As Covered California continues to take hold here, I am happy to see some people having access to insurance for the first time in years (or even ever), but undocumented immigrants are completely ignored in our new legislation. Hopefully, there will be political will in the coming years to change that (see more here). Thankfully, in California, we have a wonderful state-based program called "Every Woman Counts", also known as the Cancer Detection Program (CDP) and its sister program Cancer Treatment Program (CTP). Both of these wonderful safety net programs were essential in getting Maria expedited diagnosis and care. Thank goodness for our safety net! I really hope everyone knows how important it is that there are programs in place. Please don't disregard the power of the safety net.
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I am happy to report that it has been over four years since Maria's diagnosis, and though she went through a lot during that first year, she is currently cancer free. She continues to do well physically and emotionally. She still never complains.

Our health care system is pretty ridiculous, even for well-educated, English-speaking, documented citizens with excellent top-of-the-mark health insurance coverage. It's scary, often overwhelming, difficult to navigate, and generally not user-friendly. And yet, there are some amazing gems that enable providers like myself to continue doing the work we do. Every Woman Counts is one of those gems-- designed to offer appropriate screening AND treatment for vulnerable populations. It is funded by a combination of federal funds and augmented California tobacco taxes. Woo hoo!

It's awesome for me to discover that there are similar such cancer detection and treatment programs available in all 50 states (see link here). It's administered differently in every state, but the CDC provides matching funds and support for these programs. Thank goodness they exist! But, unfortunately, this program are limited to specific diseases, namely breast and cervical cancer.

Now with our new health care legislation, more gaps are being closed, but there is still much work to be done. Don't you think the next best step is to figure out a way to provide similarly excellent care for all people in our country? And not just for their breasts and their cervices, but perhaps also for their migraines, diabetes, depression, heart disease, and even ingrown toenails.

I do.



Additional references:
http://www.cancer.org/healthy/findcancerearly/womenshealth/earlydetectionofspecificcancers/nbccedp
http://healthpolicy.ucla.edu/publications/Documents/PDF/undocumentedreport-aug2013.pdf
http://www.huffingtonpost.com/2014/01/28/undocumented-immigrants-health-care_n_4679348.html

These things are cyclical: the Olympics, fashion, and whooping cough

Whooping cough (in doctor-speak pertussis, caused by the bacterium Bordetella pertussis) is akin to presidential elections, fashion, and the Winter Olympics.


All are cyclical.

But while campaign schedules and the winter games follow a clear and predictable pattern (no one was taken by surprise when the Sochi games kicked off last week), fashion and whooping cough are a little less attached to the Gregorian calendar.

Fashion tends to follow relatively long cycles-- after all, most of us had to recover from the trauma of the '80s before hairspray and leggings showed up again in our closets. Rest assured, traumatized and recovered people, Juno Mars' Superbowl half-time show last week confirmed that the '80s are back.

Whooping cough cycles every 3-5 years

Whooping cough gives us less recovery time because it tends to emerge and submerge in cycles every three to five years.

Weird, right?!

It's not really understood why this is; the cycling probably has to do with a combination of something called herd immunity, parts of the actual bacteria life cycle, and some evil wizardry of nature.

The last bad cycle of whooping cough in California was in 2010.

In California in 2010, there were more than 9,100 documented (laboratory-confirmed) cases of whooping cough.  This was more cases than had EVER been reported in the vaccine era (The whooping cough vaccine came out in the 1940s). It can be assumed that there were many more thousand undocumented cases because many people with the disease don't actually get tested. Of these confirmed cases, 83% were in children under 18. That year, 10 California infants died of whooping cough. All infants were under three months of age, and most were under two months. Nine out of ten were Latinos. One of my wonderful residency classmates was involved in the care of one of those infants here in Sonoma County.

After that peak in 2010, California cases went down:
3,011 total cases in 2011
1,022 total cases in 2012
. . . but now cases seem to be increasing again:
2,372 cases in 2013.

For those Californians paying any attention, whooping cough may be coming baaaaack. Almost predictably so.

And the worst news of all? This week the California Department of Public Health announced the death of a 2 month old infant (the baby first got sick at 4 weeks of age). That's the first whooping cough infant death in California since the 2010 epidemic.

And that worries me-- and I'm thinking it should worry you as well.

What are the signs and symptoms of whooping cough?
You see, whooping cough is a pretty challenging diagnosis to make. In adults, whooping cough initially presents as a pretty mild respiratory illness, looking uncannily like the common cold.

Imagine this scenario: healthy adult comes to see her primary care provider with a few days of runny nose, low grade fever, and an intermittent cough. Astute clinician listens to her patient's lungs, checks her throat and her ears, feels reassured by no obvious bacterial infection (e.g. pneumonia, ear infection) and sends her on her way with recommendations about increasing fluids, considering zinc, vitamin C, honey and a few days of rest.

Welcome to my winter world.

But for one or two of those cases, oops, I could easily miss it! What turns out to be whooping cough looks waaaaay too much like a cold for me to distinguish between the two. As you know, antibiotics are never ever indicated for the common cold, and it can be tough to decide whether to even consider testing someone for pertussis. And we certainly don't want to be handing out antibiotics willy nilly (definite fodder for future post).

After all, odds are overwhelming that the sniffling mess in front of me has a boring cold.

And now, armed with my overly-confident reassurance, that previously healthy adult has been released back out into the world to share her undiagnosed (and untreated) pertussis with her family and friends. Off she goes to cough and snot and whoop about and spread what can be a deadly disease, particularly for our most vulnerable little ones. Let's hope she doesn't have any young infants at home!

It's estimated that for every primary care of pertussis, there are 15 secondary cases. That's pretty contagious.

What happens next is this: after four to 21 days of a little cold, that apparently simple illness develops into a more intense illness with attacks (fits) of intense coughing. These happen most often at night, averaging about 15 fits per 24 hours. This stage (called the "paroxysmal stage") usually lasts a few weeks but can last up to 10 weeks. Ugh. This is why whooping cough is sometimes called the "100 day cough". Pretty annoying.

And this is when some (but not all) people whoop.  If you want to hear what a whoop sounds like, check out this link.

Sounds pretty horrible, right? No one would miss that, right?

Here's the problem, though: plenty of adults and even infants with whooping cough don't actually ever whoop. Hmmm. . . Kiddos (i.e. ages 6-10) tend to be the whoopers, but not always them either. Goodness. And the little ones? Infants can present more subtly with poor feeding, periods of not breathing (aka apnea), and low heart rate.

The good news is that for kids and adults who get whooping cough, it's terribly annoying (no sleep, pee-your-pants annoying) without being life-threatening. The bad news is that infants can die.

In babies under one year old who get whooping cough, about half have to be hospitalized, and for those sick little guys and gals in the hospital, here are the stats:

• 23% (1 in 4) get pneumonia (lung infection)
• 1.6% (1-2 in 100) will have convulsions
• 67% (67 in 100) will have apnea (periods where they stop breathing)
• 0.4% (1 in 300) will get encephalopathy (disease of the brain)
• 1.6%  (1-2 in 100) will die

Not good.

Whooping cough vaccination
In addition to the supremely important old school rules that you should ALWAYS follow when you are sick (you know, mom's rules: wash your hands, cover your cough, don't share utensils, don't go to work), the best way we know to prevent the spread of whooping cough is through vaccination.

There are two vaccines on the market: DTaP for infants and young children, Tdap for older children (over 7 years), adolescents, and adults. These are both combination vaccines: the "D" stands for diphtheria, the "T" for tetanus, and the "P" for pertussis. I've been asked a few times by parents who want to vaccinate only against pertussis; there is no way to get a vaccine with pertussis alone--anywhere in the world. It's not available.

The official CDC recommendation is for infants to be vaccinated with four total doses of  DTaP at two, four, six, and 12-15 months. Vaccine efficacy after three doses of DTaP is between 80-95%; unfortunately there is no good data about how much immunity a baby gets after a single shot. There is also a recommended "kindergarten booster" of DTaP at age four to six years.

A study from the 2010 California outbreak showed that of pertussis cases in seven to 10-year-olds, unvaccinated kids, or kids with less than 5 DTaPs were almost nine times as likely to get pertussis than kids who were up to date on their shots.

You may have noticed that the babies who died in the California epidemic of 2010 (and the recent death in 2013) were almost all younger than the lower age limit for the first DTaP. They were too young to be vaccinated, but their family members weren't! It is assumed that those babies were exposed to pertussis by children or adults in their households that were either un- or under-vaccinated. There greatest risk was their loved ones.

This brings up the topic of Tdap, a vaccine licensed in 2005 for adults and children 11 and up.

The Tdap vaccine has been in the news a lot the last few years:

• a recent law in California requires all 7th graders to have a Tdap booster
• there are new CDC recommendations that all pregnant women get a Tdap in the third trimester, regardless of when the last time they vaccinated, and 
• a new official recommendation in 2012 from ACIP that even adults over age 65 get vaccinated. 

For the last few years, we have been strongly promoting vaccinating people with Tdap who will be around new infants (moms, dads, siblings, caretakers, aunts, grandmas). You know who you are!
While 68% of teens have received their Tdap (brave teenagers!), estimates show that only 8% of adults are up to date on their Tdap vaccine. That's pretty pathetic!

The truth about vaccines
True true, vaccines are not perfect. Patients have the right to be skeptical about recommendations offered to them and to ask questions. It can be really challenging to find reliable answers to those questions, even for providers (like myself) who pride ourselves on being evidence-based and transparent.

Immunizations have side effects-- most of which are not serious--but rare serious effects do occur. God forbid one of those rare things happens to you or someone you love. I hope not! It is also true that no vaccine is 100% protective, and that's a bummer. So if your second cousin's aunt's brother tells you he was vaccinated and still got sick, it's probably true.

It's my daily reality that the medicine I practice is imperfect, but I believe strongly that the information we have for the safety and efficacy of most modern-day vaccines is based on robust scientific research, and we are a healthier human race because these vaccines exist.

If you have specific questions about vaccinations, their risks and/or your children's please please talk to your primary care provider. He/she should be a resource to you. Always.

And please consider getting yourself and your family up to date on their DTaP and/or Tdap vaccines. I know that there are LOTS and lots of reasons not to do it: you don't have time, you hate needles, you are scared of vaccine side effects, it seems like too many shots, it just doesn't seem worth it, you're lazy, you don't actually know who your primary care provider is, you have questions, you just don't want to. . .

Here's the bottom line, are any of these excuses worth a baby's life?

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Additional references:
http://www.cdc.gov/pertussis/images/pertussis-graph-2013-lg.gif
http://www.cdph.ca.gov/HealthInfo/discond/Documents/Pertussis%20report%202-4-2014.pdf
http://www.sciencebasedmedicine.org/pertussis-epidemic-2010/
Great lecture specifically for physicians: http://www.cdc.gov/vaccines/ed/pertussis/default.htm
http://www.immunize.org/askexperts/experts_diph.asp
http://www.cdc.gov/pertussis/about/complications.html