NOTE: This post is about an unexpected reaction following vaccination with Shingrix, a new shingles vaccine that is more than 90% effective. But let me be perfectly clear at the outset that the reaction is not specific to Shingrix and could equally well have happened following vaccination for tetanus, influenza, pneumonia, etc.).
When my husband and I went for the first of the two-shot Shingrix series in April, we had both read up on all the warnings. We knew it was more likely than most vaccines to cause post-injection effects that might be serious enough to interfere with our regular activities. We made sure our calendars were clear for a couple of days after our appointment just in case.
As expected, within a few hours of the shot we both experienced fatigue, chills, headache, and general malaise. I felt fine by the next day and by a couple of days later the achiness in my arm had subsided. My husband had symptoms for a day or so longer and also had bleeding and a substantial bruise at the injection site. But within a few days he also seemed be recovered, except for the lingering bruise.
What we didn’t expect was this: A week after the injection, my husband awoke in the middle of the night with lancinating (knife-like) pains in his shoulder a couple of inches above the injection site. By morning it had subsided to a dull ache, but he spent most of the day putting hot packs on his shoulder, taking Tylenol, and wincing whenever he extended his arm.
Alarmed, I consulted Dr. Google and although I consider myself to be a moderately savvy health services consumer, I eventually zeroed in on a condition I’d never even heard of - SIRVA, or Shoulder Injury Related to Vaccine Administration. SIRVA was first observed in 2007 and seems to be becoming more frequent - or at least more frequently reported. It is primarily an adult problem, rarely seen in older children and adolescents for reasons not fully understood and virtually never in infants and toddlers, for whom the thigh is the preferred administration site.
Many physicians and health-care providers remain unaware of this condition. For awhile most cases of SIRVA were not covered by the Vaccine Injury Compensation Program, leaving the lawyers who advertise on late-night TV better informed than the medical profession. As of 2016, however, cases of SIRVA emerging within 48 hours of receiving many vaccines (including tetanus and influenza but unfortunately not Shingrix or Pneumovax-23) are now eligible for compensation - though this may be cold comfort for anyone truly disabled by the condition.
After 3 or 4 weeks my husband’s pain and stiffness had completely resolved and the bruising had faded. Some victims, however, are not so fortunate. SIRVA can persist for months or even years - even for a lifetime. It can interfere with the activities of daily life, work, and sleep. Steroid drugs, physical therapy, or surgical intervention have been prescribed with mixed results. Adding insult to injury, SIRVA may also cause diminished vaccine efficacy.
As an apostle of vaccination, one who has spilled much e-ink in attempting to debunk deliberate or uninformed false reports of vaccine-induced adverse events, I realized as soon as SIRVA appeared on my radar that I had to educate myself about this side effect of vaccine administration so that I could acknowledge the risk and determine how it might be prevented or minimized.
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What, exactly, is SIRVA?
SIRVA is an injury to the musculoskeletal structures of the shoulder (e.g., tendons, ligaments, bursa) that can follow any vaccination intended for intramuscular injection in the upper arm (tetanus, influenza, pneumonia, shingles, etc.). It generally emerges within 48 hours and most often on the day of the injection. (My husband's late-occurring reaction was atypical.) Note that SIRVA requires severe shoulder pain and limited range of motion; it is not to be confused with the soreness and discomfort at the injection site that typically follow any vaccination.
SIRVA most commonly occurs when the needle is inserted too high into the shoulder, so that the vaccine is unintentionally injected into and around the bursa of the shoulder, causing an inflammatory reaction. Injuries can include frozen shoulder, in which shoulder motion is limited and painful because of inflammation of the joint capsule; bursitis, caused by injury to the bursal sac; and tendinitis or rotator cuff injury caused by inflammation of the tendons that connect muscle to bone.
Though less frequent, SIRVA can also occur after the needle is inserted too deep, causing tendon or nerve pain even if the bursa is not punctured. This probably most often occurs not because of "operator error" but because the standard 1-inch needle is too long for use in individuals who are small or who like my husband are relatively lean.
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What you can do to protect yourself from SIRVA?
Now that SIRVA is an officially recognized post-vaccination injury, it is reasonable to hope for a greater emphasis on proper injection technique and for a review of the CDC's current one-size-fits-most recommendations for needle size (that is, one inch except for newborns and patients over 200 pounds).
Meanwhile, there are a few simple measures you can take to maximize the chances that your vaccination will be administered in the right place, at the right angle, using the appropriate length needle:
1) Discuss the issue with your health care provider to make sure s/he is SIRVA-aware.
2) To ensure proper needle placement:
3) The needle should be inserted at a 90-degree angle to the skin ("straight in"). To encourage proper injection angle:
4) To avoid the risk of over-penetration, inquire about the use of a shorter needle if you are small and/or lean. You may have to go to a doctor's office to obtain this level of customization. Even then, don't wait till the nurse or doctor enters the room with a fully loaded syringe; check in advance.
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As a health care professional himself, my husband knows that the consequences of shingles are potentially even worse than those of SIRVA, and that any vaccine, not just Shingrix, can lead to SIRVA. Even so, he understandably cringes at the prospect of his second Shingrix shot, and having watched his misery from a ring-side seat, I'm a little wary myself. That’s just the way we’re wired - to avoid things that have been threatening or painful to us in the past, an evolutionary strategy that has usually but not always served us well.
In the current climate of distrust and misattribution that has led to the tragic demonization of what is truly a miracle of modern medicine, attempting to educate those who are counter-prepared to listen can feel like spitting in the wind. I do it because I have a compelling personal narrative to share and believe that if even one child is spared what my daughter endured, and even one mother is spared having to watch her child suffer as I did, then my efforts will not be unrewarded. But I do not delude myself about the overall impact of my message.
Unlike autism, SIRVA, though rare, is a genuine adverse event associated with vaccination. Although any medical procedure carries some level of inherent risk that must be balanced against its individual and societal benefits, the general consensus is that SIRVA is a preventable injury that can be almost completely eliminated simply by paying closer attention to injection technique and needle length.
I had the flu this year and it was a bear. My husband got it too, even though we both had our flu shots (the high-dose super-strong version for older adults). I hope the shot reduced the severity of the disease because I’d hate to think how much worse the full-on version might have been.
We're not alone. This is the worst flu season in several years - possibly comparable to if not worse than the 2009 swine flu epidemic - and influenza is widespread in all regions of the US. The most prevalent strain (by far) of the virus - H2N3 - also tends to be the most severe.
Although flu victims may joke wryly about not being sure whether they're afraid they'll die of the flu or afraid they won't, the flu and complications such as pneumonia are actually killing as many as 4,000 Americans per week, so - not really such a joke after all. The highest-risk populations are infants, the elderly, and people with compromised immune systems, but young, healthy individuals are also at risk of succumbing to sepsis or septic shock, an often overlooked complication of many illnesses, including the flu. Sepsis kills up to 500,000 Americans per year by overwhelming the body's defenses against infection.
Even though my husband and I apparently lost the lottery this year, we won’t hesitate to be vaccinated again next year. Here’s a pretty good explanation of why flu vaccines (unlike many others) may only provide partial protection and why we should get the shot even so. It also explains how an influenza pandemic differs from the seasonal flu we’re experiencing now.
The holy grail is a universal flu shot, but until then, the current vaccine is our best shot at avoiding the flu and protecting others. Even if you've already had the flu, you can still catch one of the other three strains in wide circulation. And even if you think an uber-strong immune system is your superpower, please accept this Valentine's Day reminder that when you don't have a shot you are taking the risk not only on your own behalf but also on behalf of everyone around you. Chocolates are fine, but this is the best gift you can give to those you love best.
The flu season will probably last through May and the flu can strike in any month, so check with your doctor if you haven't yet had your flu shot.
Good news on the adult vaccination front: A new and superior shingles vaccine, Shingrix, manufactured by Glaxo SmithKline, has now been approved. Shingrix is more than 90% effective, as opposed to the around 50% effectiveness of the earlier version, Merck’s Zostavax. Also unlike Zostavax, the effectiveness of Shingrix doesn’t drop off dramatically among older individuals.
A few weeks ago I posted an essay about my sister’s experience with a relatively mild case of shingles, which I correctly attributed to her having been vaccinated with Zostavax. The operative word here is “relatively.” When I notified my family about the new and improved vaccine, her immediate response was, “Since studies have shown you can get shingles more than once, I will check it out. Having been there, [I advise you to] do what you can to avoid getting shingles!”
Because, as my sister noted, having shingles doesn't protect you from getting it again, the CDC is recommending that you have the Shingrix shot even if you've already had shingles. And even if you've already been inoculated with Zostavax, the CDC is recommending repeat vaccination with Shingrix.
A few comments. First, two doses of Shingrix are required, 2-6 months apart, as opposed to just one of Zostavax. Second, the side effects are a little more common and severe than those of Zostavax, so time your shot to allow 2-3 days to recover from being a little feverish and achy, and don’t schedule it just before an important event. Third, it is a little pricier than its predecessor - $280 for the two shots. (Medicare will cover Shingrix under Part D, not under Part B like the flu vaccine, which may favor being vaccinated in a pharmacy rather than a doctor's office.) I hope these drawbacks don’t reduce uptake but fear they will, given the shockingly low participation in the Zostavax program.
One additional point: Shingrix is recommended for everyone fifty and over, not sixty and over like Zostavax.
Among the wedding festivities when my nephew got married in New York in late September was a walking tour of Central Park. The day was sunny and unseasonably warm, and our guide was knowledgeable and articulate. It had been years since any of us had been to Central Park, so we had a great time reacquainting ourselves with its charms.
When we stopped to admire Frederick Roth’s beloved statue of Balto the Siberian husky, my grandchildren, like many before them, clambered astride the sculpture. Our guide took the occasion to point out how shiny Balto’s bronze back was from the buffing it received from all those youthful bottoms. The inscription on the statue reads, "Dedicated to the indomitable spirit of the sled dogs that relayed antitoxin 600 miles over rough ice, across treacherous waters, through arctic blizzards, from Nenana to the relief of stricken Nome.”
Gradually, with a little help from our guide, the story of the legendary Balto, Alaska’s best-known public health hero, bubbled up from the dark recesses of my memory.
In December of 1924, Dr. Curtis Welch, the only physician in the tiny town of Nome, Alaska (pop. 1,500, of whom about two thirds were settlers, the rest Native Alaskans), diagnosed first one and then several cases of diphtheria. Although a diphtheria vaccine had recently been developed, it was not yet in widespread use even in urban medical centers, much less in an Alaskan village just south of the Arctic Circle. The most widely used treatment was an antitoxin serum that could not eliminate an already established case of diphtheria but could neutralize any circulating toxins and thus greatly attenuate the disease.
Several months earlier, Dr. Welch had placed an order for serum to replace the expired lot he had on hand, but it never arrived. By now the harbor was icebound and the last ship of the year had left port. Nome’s main link with the outside world was via dogsled along the Iditarod Trail.
Realizing an epidemic was imminent, Dr. Welch appealed for help in obtaining an emergency supply of serum. Some brave bush pilots volunteered to make the flight to Nome, but the Board of Health feared that a not-unlikely crash would result in the loss of plane, pilot, and serum. In the end, it was decided to make the delivery by dogsled relay along the Iditarod Trail. The serum was perishable, so speed was of the essence.
There were twenty legs of the relay, twenty mushers, and twenty teams of dogs. The first musher started out on January 27, 1925; the last dogsled, with Balto in the lead, arrived in Nome on February 2, 1825. There has been much dispute among dogsled enthusiasts about whether Balto truly deserved the credit he subsequently received; he wasn’t necessarily the strongest nor the smartest nor the most capable sled dog, but he was the lead dog when the serum arrived, so he came to symbolize the spectacular success of the mission.
It has all the elements of a great story: A canine hero, struggling against great odds, saves the day, and is forever after memorialized in an annual event that everyone knows and loves, the Iditarod Trail Sled Dog Race. Without treatment, up to 10% of diphtheria victims die, with much higher rates among children and older adults. If it weren’t for the courageous mushers and their rugged dogs, pressing on under blizzard and white-out conditions, many hundreds of children would have died of diphtheria in the greater Nome area. Instead, only a handful of children are known to have lost their lives (though it is likely that at least 100 additional deaths - of children who failed to receive he serum - went unreported in the Native Alaskan community).
At the same time, it’s a testimonial to the superiority of vaccine over serum, of prevention over cure, of measures that can be taken calmly under non-emergent conditions rather than only after exposure. When children and adults can be systematically and routinely inoculated, there are no frantic decisions about how to proceed, no potential victims overlooked, no lives (human or canine) to be risked under highly unpredictable conditions.
In the Great Race of Mercy, everything went right, which is what shapes the narrative arc of the Balto story. Around the world thousands of children for whom everything did not go right die annually of diphtheria. No races are named after them, no dogs are lionized. This should never happen.
I’ve known several people who have had shingles, and they’ve all suffered severely from painful blisters on their face and/or back that persisted for several weeks, along with fever, headache, fatigue, and light sensitivity or some combination of these symptoms.
So when my sister called a couple of weeks before a long-planned and eagerly-anticipated family celebration to tell me she’d been diagnosed with shingles, my heart sank to my toes. Our gathering wouldn’t be complete without her, plus I shuddered to think of the ordeal she faced.
What happened was - pretty much nothing. She had a few dry scabs on her back and a few days of feeling achy, and that was it. Although her doctor assured her she was not contagious, she offered to cancel her trip if our niece, scheduled to host my sister for several days, had any qualms about exposing her toddler son. Presumably our niece’s pediatrician assured her it was safe to proceed with Plan A, and a good time was had by all.
Getting off so lightly wasn’t just my sister’s good luck. She had had her shingles shot, which not only reduces the risk of shingles but can dramatically diminish the severity of the condition. Why anyone who has known or even heard about a shingles victim would not rush to be vaccinated is a mystery to me, but in fact the shingles shot is the most neglected of adult inoculations. Although it's recommended for adults sixty and over, even if they have already had shingles, only 28% of Americans in that age range - just over a quarter - were vaccinated in 2014. Where’s the logic in that?
Shingles, also called herpes zoster, is caused by the varicella zoster virus, the same microorganism responsible for chickenpox (varicella). Once a person has had or been vaccinated for chickenpox, the virus becomes dormant in nerve roots. In about a third of these individuals, by mechanisms not well understood, the virus reactivates later in life and cause shingles. (There is no evidence, by the way, that having been vaccinated in childhood, as opposed to having had chickenpox, affects either way the likelihood of developing shingles.)
A small percentage of shingles patients will be hospitalized; a few will die. Most will be thoroughly miserable. One of my neighbors considered her shingles episode to be her “lost summer.” At our age, who wants to lose even one precious season if it can be avoided?
Although shingles cannot be spread from person to person, there is a remote chance of spreading the virus to someone who has never had either chickenpox or the chickenpox vaccine, but only via direct contact with weeping lesions. Admittedly an unlikely scenario, but still, one more reason to ensure that every medically-eligible child is vaccinated for chickenpox.
In 1962, a seven-year-old girl named Olivia brought home a note from school warning about an outbreak of measles in her class. Soon Olivia too was running a mild fever and covered with red spots. Over the next few days the disease ran its expected course, and her parents weren’t particularly worried. To while away the time, her doting father amused her by telling her stories, teaching her to play chess (at which she promptly beat him), and showing her how to make figures from pipe-cleaners.
Then one morning, just as Olivia appeared to be nearly recovered, her father noticed that she had suddenly become feverish and unresponsive, stirring only to moan about a headache. Within just a few hours she was dead from measles encephalitis, a serious complication for which to this day the best medicine can offer is supportive care.
Olivia’s father, Roald Dahl, author of such children’s classics as Charlie and the Chocolate Factory and James and the Giant Peach, was “limp with despair.” Dahl was a “do-something” sort of person. When his infant son had suffered brain damage in an accident a couple of years earlier, he had actually set about to design a valve to prevent blockage of the shunt that drained fluid from the brain - and succeeded. He was no biomedical engineer, but when the need arose, he assembled a small team and acquired sufficient expertise to meet the challenge. Now, with Olivia’s life hanging in the balance, there was nothing he could do. He was haunted by his sense of helplessness, compounded after her death by inchoate feelings of guilt that he had somehow let his daughter down. And yet, what could he have done?
Twenty-six years later, hoping to extract some shred of meaning from Olivia’s death by sparing others a similar fate, he wrote, “[T]here is today something that parents can do to make sure that this sort of tragedy does not happen to a child of theirs. They can insist that their child is immunised against measles. I was unable to do that for Olivia in 1962 because in those days a reliable measles vaccine had not been discovered. Today a good and safe vaccine is available to every family and all you have to do is to ask your doctor to administer it.”
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Measles. The very word sounds slightly risible. Like “Measles the Clown,” perhaps. Or trifling. Like “just some measly childhood disease.”
But measles is no joke. It is highly contagious and can be spread by an infected person up to four days before before the telltale rash emerges, via tiny airborne droplets produced by sneezing or coughing that remain suspended in the air for two or more hours, even if the infected person is no longer in the room. In many victims the disease runs a benign course, but one in ten are hospitalized, some of whom suffer serious complications including pneumonia and encephalitis. Around 1 or 2 in every 1,000 victims die.
Prior to the development of a vaccine, nearly everyone in the US contracted the measles by age 15 - that is, an estimated 3 to 4 million cases/year - so the mortality rate of .1-.2% added up to many thousands of victims per year, mostly children. Measles still causes more vaccine-preventable deaths worldwide than any other infectious disease.
A live measles vaccine was first licensed in 1963, just a year after the tragic death of Olivia Dahl, and was superseded by an improved version in 1968. In the twenty years following its introduction in the US, an estimated 52 million cases of measles were prevented, with corresponding dramatic reductions in measles-related complications and death. In the year 2000, measles as an endemic disease was officially “eliminated” from the US; the only reported occurrences of measles were occasional cases introduced from abroad. Truly a public health triumph.
Though measles persists globally, most notably in developing countries, aggressive vaccination campaigns have resulted in a precipitous drop in mortality from measles complications worldwide, with a 75% decrease between 2000 and 2013.
We now have a measles vaccine that is 97% effective after a single dose and close to 100% effective after a booster dose, which has been recommended since 1985. (Note: People born between 1957 and 1984 should review their immunization status with their doctor, especially if they are planning foreign travel.) To reduce the pain of multiple injections, the vaccine is almost always administered in combination with vaccines for mumps and rubella (MMR) - the first at 12-15 months (earlier if travel abroad is planned), the second at 4-6 years. The rate of serious or life-threatening complications following MMR vaccination is vanishingly small. Although there is NO evidence whatsoever to support a link between MMR vaccine and autism, and although that claim has long since been proved a hoax, the preservative thimerosal (the supposed villain) is no longer used in any vaccine administered to children.
As a result, “do-something” parents like Roald Dahl actually have something they can do to ensure that Olivia's fate is not shared by their own child: "They can insist that their child is immunised against measles.”
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End of story? Sadly, no. For a disease that’s supposedly been eliminated, measles seems to crop up in the news surprisingly often. After reaching a low of 37 cases in 2004, we now spike record highs every few years, peaking at 667 cases in 2014. A 2013 outbreak occurred at a megachurch in Texas whose pastor had preached from the pulpit against vaccination. In 2015, nearly 200 cases in 24 states were traced to exposure after visits to Disneyland in California. Currently making headlines is an outbreak in Minneapolis, starting in the Somali-American community (fueled by anti-vaccine advocates from outside the community who prey on worries about autism, a malicious genie that refuses to go back in the bottle) and fanning out into the surrounding population through contact in the public schools.
These outbreaks are all shots over the bow. Because international travel is so commonplace, the occasional introduction of measles from abroad is inevitable so long as the disease remains a global scourge. Even more troubling is the occasional case in which no known link to international travel can be found, raising the specter that the disease might once again become endemic. But regardless of the source of any given case of measles, what happens next - whether that single case is self-contained, leads to isolated regional outbreaks, or triggers a full-blown epidemic - depends on how many susceptible individuals are subsequently exposed.
Who are these susceptible individuals? As noted above, a handful remain vulnerable even though they have been vaccinated - especially if they have not received a booster dose. In addition, some people are ineligible to be vaccinated because they are very young or very old, because their immune systems are compromised due to illness, because they are pregnant, or in very rare instances because they are allergic to some component of the vaccine.
The rest of the susceptible population consists of individuals - mostly children - who though medically eligible have not been vaccinated - and herein lies the problem. Because measles is so highly contagious, vaccination coverage needs to be reach around 95% to maintain “herd immunity” and prevent further spread once a case is introduced. Doing the math, almost everyone who is medically eligible must be vaccinated to prevent the spread of measles, on a regional level or potentially on a much larger scale.
Epidemiological studies of measles victims have repeatedly shown that most had not been vaccinated, and of these, the majority had been exempted for non-medical reasons relating religious or philosophical beliefs, or to the systematic spread of discredited data about the health risks of vaccinating (negligible) vs not vaccinating (potentially lethal). Consequently, vaccination rates continue to fall short of the 95% threshold in communities in many areas of the country.
The underlying cause of the societal breakdown that could lead to such a situation is difficult to pinpoint. Parents may be uninformed about the importance of completing immunization schedules in a timely manner or persuaded that they cannot trust scientific findings or governmental protections. They may believe their responsibility to their own children takes precedence over the social contract stipulating that we all accept small risks to avoid much larger risks to society as a whole, without understanding the risks to which they subject their own children by leaving them defenseless against measles. Government agencies in turn may succumb to pressure to issue non-medical "personal belief" exemptions or be reluctant to enforce existing vaccination requirements.
People with far more expertise than I can claim have yet to figure out where to intervene in this chain and how hearts and minds can be changed. Part of the problem, of course, is that thanks to the very success of immunization campaigns, many Americans have lived their entire lives without having witnessed the ravages of a major epidemic. Let us hope an answer can be found that doesn't require a reintroduction of some of the terrifying communicable diseases medical science has conquered.
How fortunate we are to live in a time and place where children like Olivia no longer need to die as their parents stand by helplessly. How sad that some will anyway, and that there is no immediate end in sight to this trend.
I am a bit of a genealogy buff - not so much because I enjoy long lists of “begats” but rather because I love learning about how our ancestors participated in the larger sweep of human history. What a difference, for example, between the English heritage of my maternal grandmother, whose forebears made the treacherous journey to colonial Massachusetts in 1638, and the English heritage of my paternal grandmother, whose father had to foreswear allegiance to Queen Victoria in order to become a U.S. citizen more than two centuries later.
This hobby, both through tracing my own and my husband's lineage online and through our DNA matches, has brought me into contact with relatives who have recounted fascinating and sometimes tragic tales about our forebears, as well as about the daily details of their lives. One of my ancestors, for example, was a sailor who fell overboard and drowned. Apparently he was typical of seamen of his day who never learned to swim; and even if he had, his heavy clothing and shoes would probably have made it impossible for him to stay afloat long enough to be rescued.
I recently heard, from descendants of my husband’s maternal great grandparents, a very poignant story about my mother-in-law’s first cousin Annie. Annie played the piano in a silent movie theater near her home in central Canada, and her music books are still in her family's possession. Annie later went to work in a lawyer’s office, and one day her boss asked her to translate for a client named Joseph, who spoke only French. The conversation must have continued after hours, because Annie and Joseph fell in love and were married in October of 1917.
A year later, on October 26, 1918, as the influenza pandemic raged outside its doors, Annie gave birth to their daughter Anne-Marie in a nearby hospital. Within a few days Joseph had died of the flu. Annie, by now gravely ill herself, was not told of Joseph’s death, but two days later, according to family legend, she murmured, “I see Joseph. He has flowers.” Those were Annie's last words.
Several lives were changed utterly on that bleak November day. Annie's and Joseph's were cut short just as they were launching their own family. Anne-Marie, orphaned at the age of ten days, would never know the parents who had so recently been anticipating her birth. Her grandparents unexpectedly found themselves with a newborn infant to raise.
This story of death and disruption was repeated millions of times during 1918. Few families were left untouched. We've been told that more people were killed by the flu than by World War I, but sometimes it takes a narrative like the story of Annie and Joseph to bring home the toll of human suffering and loss summed up in this grim statistic.
Just three years earlier, in 1915, the Canadian poet John McCrae penned what is probably the best-known and perhaps most moving war poem ever written, “In Flanders Fields.” Though it decries the senseless carnage of war, its sentiments apply equally well to victims of the pandemic that was wreaking so much havoc at the same time:
“We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie
In Flanders fields.”
If only a flu vaccine had been available to prevent the disease or attenuate its severity, it might have made all the difference for Annie, Joseph, and little Anne-Marie.
Pertussis or whooping cough (named for the characteristic though occasionally absent “whoop” at the end of a coughing episode) is a potentially serious disease at all ages but particularly in very young infants. It starts out deceptively resembling a cold, with a runny or stuffy nose, sneezing, and a mild cough. Over the next week or two, the cough becomes increasingly severe, with violent repeated coughing, gasping for breath after a coughing fit, difficulty eating and drinking, sometimes progressing to dehydration and exhaustion as well as pneumonia. About half the babies afflicted with pertussis will spend time in the hospital. Some will die.
From 1926-30, more than 36,000 deaths from pertussis were recorded in the US. Then, in the early 1940s, an effective vaccine was developed. Although its side effect profile was not completely benign (mostly mild but in rare cases, seizures), it was a relatively safe procedure compared to the risks of pertussis and by 1948 had led to a dramatic decrease in whooping cough cases and deaths. Indeed, some even dared to hope the disease could be eradicated. (So far, even to this day, only one human disease, smallpox, has been completely eradicated, along with a handful of diseases that were once the scourge of livestock.)
In the 1970s, just as the disease was reaching a historically low ebb, controversies about the safety of the Diphtheria-Pertussis-Tetanus (DPT) immunization erupted around the world. Documentaries and newspaper reports purporting to demonstrate neurological damage alarmed the public, followed by an even more inflammatory 1982 film entitled Vaccination Roulette, which claimed the immunization could cause permanent brain damage. Victim advocacy groups sprang up, lawsuits against manufacturers were filed, vaccine prices rose, and some companies even discontinued manufacturing the vaccine. Research confirming the safety of the DPT immunization and a strong counter-response especially in the US somewhat calmed but could not fully quell the furor. Immunization rates went down.
Sound familiar? This predated the media storm provoked by the fraudulent research of Dr. Andrew Wakefield demonizing the Measles-Mumps-Rubella immunization and its supposed connection with autism, and perhaps even provided a template for that campaign.
For better and for worse, these concerns led to the development of a new pertussis vaccine, introduced in 1998, which causes fewer side effects and is better tolerated but also wears off more quickly and may be less effective.
Pertussis, once thought to be consigned to the junk heap of history, has now come roaring back, with a measurable increase in baseline levels of the disease and epidemics every few years during which morbidity and mortality spike. It is far more common that other vaccine-preventable diseases such as measles and rubella. The reasons for this resurgence have yet to be fully explained. In part it may simply be an artefact of improved surveillance in adults - in whom, make no mistake, pertussis can also lead to serious illness. Genetic changes in the bacterium and the reformulation of the vaccine may also have contributed. There can be little doubt that reduced uptake of the vaccine, further fueled by the more general suspicion of vaccination that now prevails in the US, is also a factor. Numerous studies have demonstrated a negative correlation of pertussis vaccination rates with both morbidity and mortality.
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The biggest chink in our armor has always been the youngest sector of the population, infants who have not yet started or have only partly completed the immunization process. They are at once the most vulnerable to serious complications and the least protected from exposure. As Dr. Benjamin Spock warned in 1946 - in stark contrast to his generally reassuring tone - pertussis is “a disease to avoid like the plague if you have a baby in the household.” Those words remain as true today as when first he uttered them. The vast majority of pertussis deaths occur in infants aged 3 months and under.
The immunization sequence starts at age 2 months; after a series of boosters, the child is considered fully immunized at age 15-18 months when the fourth shot is administered. Until then, babies and especially newborns are desperately in need of societal protection.
How best to provide that protection, however, is a topic that continues to evolve. Initially the Center for Disease Control’s recommendations focused on “cocooning,” encircling each newborn with an impenetrable shield by avoiding exposure to anyone who might possibly have the disease. Among people with pertussis, even those who may not know they have it, the attack rates among “susceptible household contacts” (that is to say, mostly babies) are as high as 80%, so the goal was to ensure that parents, siblings, and caregivers were vaccinated. Beyond that, or failing that, babies were dependent on herd immunity - that is, minimizing the spread of the disease by maintaining a vaccination rate high enough to reduce the likelihood of exposure to an active case. The percentage of vaccinated individuals needed to provide herd immunity varies from disease to disease but for pertussis is well above 90%.
Because this approach did not produce fully satisfactory results, the CDC in 2013 modified and expanded its strategy: Instead of focusing solely on cocooning, it first and foremost emphasized vaccination of all pregnant women irrespective of previous history of vaccination, ideally in the last trimester of every pregnancy, in order to confer passive immunity on the infant until s/he is old enough to be vaccinated.
And that’s where we now stand in the year 2017. (Check out the CDC's FAQ on pertussis for a good summary of the issues.) Despite the shortcomings of the current vaccine - it is only around 85% effective and confers immunity for only a few years - no trials of improved vaccines are currently underway.
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In February of 2005, in anticipation of attending a conference in Eastern Europe, I visited the University of Michigan’s Travel Clinic to make sure my immunizations were up to date and received a routine “tetanus shot.” When I received my paperwork at check-out, I noticed my shot had been recorded as “Tetanus, Diphtheria (age 7-adult) (Td P-Free).” Huh? I’d always thought of the tetanus shot as “DPT.” When I inquired what had happened to the P, I was assured that what I had received was in compliance with CDC recommendations for people over 65. Never mind that I was still three years short of 65; close enough, they said.
Then in 2010, a whooping cough epidemic in California made national news, with the highest number of cases reported since 1955, and I once again wondered - not just whether I was adequately protected, but also whether there was any danger of exposing my grandchildren to this disease. I decided I would put the P back in DPT and at my next visit in January 2011 requested the current equivalent recommended for people age 11-64, even though I had now reached the age of 65.
Turns out I wasn’t the only one to notice. In October of 2010, the Advisory Committee on Immunization Practices (ACIP) issued a new recommendation that anyone older than 65 be vaccinated for pertussis, though only if s/he had not received a prior dose of Tdap and if s/he expected to have close contact with an infant under one year old. A few months after I made my request, one of the two widely available pertussis vaccines for adults was approved for use in individuals over the age of 65, so an off-label use of the drug was no longer required. Since grandparents have been shown to account for 6-8% of newborn exposure to pertussis, babies were seen as the main beneficiaries of this change, but it also confers an extra measure of protection in seniors whose immune systems might not be working as well as they once did.
Still, since immunity wears off after a few years, I couldn’t help wondering why repeat doses still leave out the P. The answer took a little googling but the rationale seems to be twofold: 1) the CDC is investing its efforts in vaccinating pregnant women as its main strategy for protecting infants; and 2) the vaccine has not yet been adequately tested in people over 65. Pharmaceutical companies are apparently compiling data to respond to the second issue as we speak, so watch for a possible change in this policy as well.
Even though I don’t currently have a newborn grandchild, I for one am happy to be part of the effort to protect any infant with whom I might come in contact and to contribute to the overall level of herd immunity. I’ve always been a belt-and-suspenders sort of person, so vaccinating pregnant women combined with maintaining high levels of immunity in the general population makes a lot of sense to me.
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A parting shot for any pregnant woman or mother of a newborn baby: If for whatever reason you've elected not to have yourself or your other children vaccinated - be it mistrust of the government or mistrust of the pharmaceutical industry or religious scruples - or if you haven’t bothered because you’ve never seen a case of whooping cough or think herd immunity will protect your baby, or if you’ve just been too busy to complete your children’s vaccination program, please take a moment to LISTEN TO THESE HEARTBREAKING NARRATIVES shared by women whose lives have been forever changed by pertussis.
Losing a child is devastating. Losing a child after knowingly rejecting or neglecting measures that could have prevented that death is beyond devastating. It will haunt you for the rest of your life. Don’t be that mom.
“Despite years of research, there’s no good way to convince anti-vaxxers of the truth. It’s time to make vaccination mandatory for all kids.” Phoebe Day Danziger and Rebekah Diamond in Slate.com, July 25, 2016.
Some pro-vaccination advocates have become profoundly discouraged about the possibility of educating or persuading their “constituents” of the importance of vaccination and have chosen instead to focus their efforts on obtaining legislative solutions. From that vantage point, I guess blogs like mine would more or less qualify as spitting in the wind.
I couldn’t be more sympathetic. Having spent much of my professional career as a foot soldier in the struggle against tobacco, I am well aware of how easy it is to create debate where none exists, to push for a “balanced” view or urge compromise when in fact there are not two “sides,” merely one scientific truth. I understand that laws and regulations (or more accurately, “protections”) are necessary to promote herd immunity and uphold the social contract, and they can’t be allowed to be framed as a “choice” or a matter of personal freedom.
On the other hand, laws can be changed, revoked, qualified, voted down, left unenforced (wink, wink), etc. (As my daughter exclaimed when Roe v Wade received its first serious challenge in 1989, “I thought this was settled 17 years ago!” She’s older and wiser now and knows that laws don’t necessarily stay put.) Moreover, laws governing vaccination policy generally apply on a state-by-state basis, and unconvinced parents may homeschool their children while migrating from state to state seeking an environment with more lenient provisions or enforcement practices vis-a-vis vaccination. As if things weren’t already in turmoil, we’ve now entered an era in which the fox has essentially been invited into the henhouse.
So in the spirit of trying to do what I can, when I can, where I can - which is in general how I try to approach life in my seventies - I will continue to blog in the hopes that some will be swayed by my perspective. But I will also lend my support to science-based legislation, knowing that if some of us fail to heed the hard lessons of past epidemics, all of us may be doomed to repeat history.
Until 1990, when vaccination for Haemophilus influenzae Type B (Hib) meningitis was introduced in the US, Hib meningitis was the most common form of meningitis in children under five. Before the development of effective antibiotic treatment the mortality rate was close to 100%. By the time my daughter was stricken in 1974 (as described HERE), the chance of recovery was dramatically improved, but up to 10% of cases were still fatal, and as many as 30% of survivors experienced serious long-term complications.
By some standards you could say we were lucky because our daughter survived intact. And yes, I get it that in such a dire situation a good outcome is infinitely preferable to a bad outcome.
Still, I have never really subscribed to the pollyanna-ish calculus of comforting oneself by thinking about how much worse it could have been. The agony experienced by victim and the prolonged misery and uncertainty endured by the helpless parents are reason enough in and of themselves to avoid this illness. To me the truly lucky parents, the truly blessed parents, are those whose children never contract Hib meningitis to begin with.
Now that this devastating disease can be prevented by vaccination, it is possible for virtually every parent to be that kind of lucky. Vaccination has reduced the incidence by 99%, to fewer than one case in 100,000 children under the age of five. By far the most important factor in determining whether exposed children develop Hib meningitis is their vaccination status. Let me repeat: BY FAR the most important factor in determining whether exposed children develop Hib meningitis is their vaccination status.
In other words, for children growing up in America today, contracting Hib meningitis is not just bad luck, it's also, in almost every instance, the consequence of a bad parental decision based on antiscientific misinformation.
I cannot even imagine how I would feel had my child contracted this disease and I knew I could have taken a simple step to protect her from ever getting it.
One more thing: In 1974, my pediatrician recognized what was wrong with my daughter within moments; he'd seen it many times before. Knowing the importance of speed in confirming the diagnosis and initiating treatment, he canceled all his appointments for rest of the morning and arrived at the hospital almost as soon as we did. Today, thanks to the effectiveness of the vaccine, many physicians have never seen even a single case of Hib meningitis - a good thing for public health but a problem for the unlucky unvaccinated child who turns up in the ER, where precious time may be lost in searching for the correct diagnosis. Something to think about.