From Heartbreak to Activism: How Two Moms Are Fighting to End MenB

6zpbxc_nThe idea of losing a child to a vaccine-preventable disease is foreign to most modern American parents. We were born in a time after polio and smallpox. Most of us have never heard the telltale whoop of pertussis or seen a measles rash creeping across a toddler’s body. Even those we entrust with our children’s health have not seen many of the diseases that we can now prevent. It is a shining example of the efficacy of vaccines and the tenacity of those who have worked tirelessly to produce and administer them.

And yet, every year, we still lose children to diseases for which there are vaccines. Some are too young to be vaccinated, some are too sick, some have parents that have refused vaccines, and some are just unlucky. That is a fate that two mothers know all too well. Kimberly Coffey and Emily Stillman were both promising young women at the very beginning of their adult lives when they were lost to meningitis B. Kim was a high school senior days away from graduating and Emily was a sophomore in college.

Each one had received the meningococcal conjugate vaccine, which covers groups A,C,W, and Y. Neither was aware that the group infecting their daughter was not covered by that vaccine or that a vaccine for meningitis B existed, but was not available in the US at the time of their daughters’ deaths in 2012 and 2013.

Even in the country that repeatedly boasts of the best healthcare in the world, medical providers were powerless to stop the harmful effects of the disease. Bacterial meningitis works quickly and starts innocuously, with early symptoms often being mistaken for the flu. Kim was in organ failure within a day of her first symptoms, and Emily passed away just 36 hours after entering the hospital. Had either been lucky enough to survive the infection, their lives likely would have entailed brain damage and limb amputations.

In the years since their daughters’ deaths, both moms have become passionate advocates for the meningitis B vaccine. In 2014, the FDA approved a meningitis B vaccine for use in the United States, and as of this writing, there are two available. However, ACIP has not revised their recommendations to include meningitis B on vaccines recommended for school attendance despite meningitis B being responsible for 100% of meningococcal disease outbreaks on college campuses since 2011.

Recently, Patti Wukovits (Kim’s mom) and Alicia Stillman (Emily’s mom) have teamed up to form The Meningitis B Action Project. Their goal is simple; to spare families the pain that they have endured. Until ACIP changes their recommendations, parents first need to be aware that there are two different meningitis vaccines, and medical providers play a part in educating parents about the need for both.

We shouldn’t settle for 80% coverage when the missing 20% is responsible for half of all meningococcal disease cases in 17-22 year olds. We have an obligation to our children to keep them safe, and by getting both of the meningococcal vaccines, we greatly increase our ability to do just that.

Vaccine Advocacy: What to Say

Admittedly, the first time I contacted an elected official, I was terrified. I’m not a phone person. I’d rather have a root canal than a phone conversation. Having a script to use helped me make my point concisely.

When calling an elected official, rarely will you actually speak to them. You will more than likely be talking to a staffer or intern who is more concerned with taking the message down accurately than they are with judging what you have to say. Phone calls are effective. They require someone on the other end to pick up and engage with constituents.

If a phone call has you breaking into a cold sweat though, consider an email or mailing your legislators. You can go into more detail about your concern, however, replies are often canned responses that legislators have at the ready.

To engage with your legislators effectively, the most important thing is that you identify yourself as a constituent. That destroys the argument that no one in their district cares about an issue. You do and you are telling them that they should, too. Be persistent. Change doesn’t happen overnight and the legislative session has certain times when certain actions are most effective. If you can, meet your legislator in person or attend one of their events to gain face time.

That said, voicing your concerns is never a bad thing to do or a waste of time. With that said, here are some sample scripts. Feel free to customize these, especially to tell your own story about why non-medical exemptions need to end.

“Dear Representative/Senator_____:

I am a constituent in District ______, and am reaching out to express my interest in our community’s efforts towards a safer and healthier South Carolina, and to express my concerns over the continued allowance of non-medical exemptions, also known as religious exemptions, in South Carolina.

Vaccines are an important part of the public health initiative to keep children and families safe from preventable diseases and outbreaks. Yet each year, parents may file a religious exemption with almost zero proof, and opt out of giving their children their yearly vaccines. These vaccines are proven to be safe and effective, but our community only benefits if over 95% of the surrounding population has also been vaccinated. This herd immunity is crucial for also keeping those safe who cannot have a vaccine for medical reasons.

Tell your story here. Why is ending non-medical exemptions important to you? If using this script in a phone call, don’t be too lengthy. Pick and choose a few points here. 

Other States Lead: The argument on parent’s choice can only go so far in this case, as public health concerns do allow state legislatures to have a say in this discussion. In Jacobson versus Massachusetts, for example, the Supreme Court of the United States found legislative vaccine mandates to be constitutional as a means of protecting public health and public safety.

Mississippi and West Virginia did away with religious exemptions years ago, and California followed suit in 2015 after an outbreak at Disneyland called into question the vaccine rate of children in the area. Here’s the thing, as studies note, easier exemption regimes are associated with higher exemption rates as well as higher disease outbreaks and risks.

Send your legislator resources. Make sure that they’re from reputable sources, such as CDC, NIH, WHO, AAP, AMA, or APHA. Here are a few ideas: 

I would also love to speak with you more about this on the phone or in person if you have time. I would appreciate your views on this issue and welcome a chance to connect on how we can effectively close the loophole on religious exemptions for vaccines so that every child in South Carolina stays safe and healthy, and can grow up in peace.

Thank you and take care.”

Have you successfully engaged your elected officials on strengthening vaccine policy? We’d love to hear about it and any tips that you found useful. Leave us a comment!

The Nelsons’ Story

We often think of vaccines in numbers. Data and statistics about the efficacy, safety, and usage. But there’s a human side to the power of vaccines.

In writing this, I wondered if I should focus on the cousin born deaf because her mother acquired rubella while pregnant, or my mom’s bout with swine flu in 2009. Maybe the family friend who acquired polio as a child before the vaccine arrived and who has spent her entire adult life in a wheelchair and now in her late 60s, gets to experience the debilitating pain that is post-polio syndrome. All of their stories need to be told, and hopefully, some of them will guest post one day.

I decided to focus on what I know best, which is my daughter. I have two of them and they light up my world.

I returned to work following the birth of my second child. Handing over my tiny 6 week old baby to a complete stranger wasn’t easy for me, but like most families, we needed to be a two-income household, and I could only afford to take 6 weeks off unpaid.

Her daycare teachers adored her. She has a naturally sweet disposition, so it’s easy to see how they became smitten. I knew that they were providing the best care possible to my child and I trusted them (and still do) completely.

One day in February, when my daughter was about 8 weeks, I walked into her classroom and saw what every parent dreads, the white sign on the front of the door stating that my child had been exposed to something highly contagious. It was the flu. An 8 month old in the room had contracted it from her older sibling and exposed the rest of the class. Most of the older children had received their flu vaccine. But my baby and the other child under 6 months had not. I felt my heart fall into my stomach. I knew what the flu could do to babies like her, and I was terrified.

In young children, in anybody, the flu has the ability to cause serious complications. Encephalitis, multi-organ failure, sepsis, and pneumonia are just a few of the very serious side effects of the flu and young children are a high-risk group.

That other child got sick. He spent a week in the hospital, tiny, fighting fever, and struggling to breathe. At the time, he was only 4 months old, which is too young to receive the flu vaccine. Fortunately, he made a full recovery, something that the teachers and I celebrated with an enormous sigh of relief.

We were lucky that our daughter did not get sick. Her saving grace seemed to be her relative isolation as a non-mobile infant. Given her age, she did not interact with the other children. It was purely luck and the efforts on the part of her daycare providers to maintain a hygienic environment by frequent hand-washing and getting their flu shot.

Not all children are that fortunate. The flu is still responsible for approximately 7,000 to 26,000 pediatric hospitalizations a year, and in the years since 2004, it has killed between 37 and 171 children annually.

PedFluDeath_CharacteristicsImage

There are so many things in this world that have the desire or ability to harm our children. We can’t protect them from everything, but vaccine-preventable diseases are one area where we can get the upper hand. Children don’t have to die from whooping cough, meningitis, or even flu. It’s not just a matter of increasing treatment options. We can keep these and other diseases from our communities and that starts with vaccinating. 

Success of California’s SB277 and what a similar law would do for SC

OMMR Vaccination Rates (1)n June 30, 2015, California Governor Jerry Brown signed Senate Bill 277 into law. The bill eliminated all non-medical exemptions to vaccines. It prohibits new students or students advancing to the 7th grade from attending school or daycare unless they have the state-required vaccinations or a medical exemption. Students who attend home-based private school or independent study without classroom participation are exempt from the vaccination requirements.

In the year since it took effect, the results have been impressive, to say the least. Overall, the state’s vaccination rates rose from 92.8% to 95.6% for kindergarteners, and the percentage of vaccinated 7th graders rose to 98.4%. The law’s success also stems from school audits ensuring that students who lag behind on immunizations are identified and their parents notified. Still, the bill came on the heels of a Disneyland measles outbreak, and the increase of MMR vaccinations from 92.6% to 97.3% for kindergarteners greatly reduces the chances of measles once again taking root in California.

Like any law, it is not without its limitations. It targets two specific age groups of students, kindergarteners and 7th graders. That leaves those between kindergarten and 7th grade and those older than 7th grade out of the loop. The state also saw an increase in the use of medical exemptions, from 0.2% to 0.5%, but it is suspected that a majority of those are attributed to students who should have been medically exempt all along, but whose parents sought religious or personal exemptions due to ease of attainment.

If South Carolina were to pass similar legislation, what would that do for our vaccination rates? Traditionally, South Carolina has enjoyed a high vaccination rate among kindergarteners, above the 95% threshold needed to keep the most contagious diseases like measles and whooping cough at bay. That herd immunity varies by county, however, and some schools have large gaps in protected and unprotected students. Our adolescents aged 13-17 are well below the 95% threshold, with TDaP vaccination rates at 72.6% in 2014.

County by county, parts of our state have a big problem awaiting them. In Horry County, 1 out of every 31 students is unvaccinated. There were 455 religious exemptions claimed in 2016. They were not the worst.

That dubious award goes to Aiken County. Of the 26,163 students enrolled, 17 claimed a medical exemption and 158 claimed a religious exemption. That figure might not sound like many, but it puts the county’s certified school vaccination rate at 94.26%, not enough to protect medically fragile students from an outbreak of a highly infectious disease.

The most telling characteristic, however, is that areas with a large portion of religious exemptions (Greenville, Spartanburg, Charleston, and York Counties for example) have median household incomes above $40,000. The percentages of students using religious exemptions in those affluent counties are 1.9%, 2.2%, 1.2%, and 1.5%, respectively. In contrast, the poorest county, Williamsburg, has a religious exemption rate of 0.1%. Their median household income is $25,174.

When reviewing the actual numbers for the 2016-2017 school year, it’s quite alarming. Spartanburg County has a median household income of $43,421. With a total of 50,053 enrolled students, an astounding 1,126 claimed religious exemptions. A mere 58 claimed medical exemptions. Greenville County, median household income of $48,438, enrolled 86,244 students and had 1,678 religious exemptions. An additional 213 claimed a medical exemption.

On the other side of the socio-economic spectrum, Marlboro County, median household income of $28,612, enrolled 4,251 students and 3 claimed religious exemptions. There were no medical exemptions on file.

The full data on vaccinations by county can be found here and was originally reported by WMBF News. The median household income figures were sourced through WYFF4’s analysis of the US Census.

It is well-known that vaccine refusal is a form of privilege, with the wealthy being able to assume the financial risk of having a sick child far more easily than a poor family. If a law similar to that of SB277 were to come about in South Carolina, the biggest beneficiaries would be those in schools and communities with low vaccination rates. It would be much harder for us to fall victim to a whooping cough or measles outbreak. Currently, we have not had a case of measles in South Carolina since 1999, and that’s a result of our 95+% vaccination rate. However, if the trend towards religious exemptions continues, we will dip below the required herd immunity and measles will once again visit the Palmetto State.

It is clear from the data that the religious exemptions are the largest piece of the puzzle when it comes to increasing our vaccination rates. The children claiming medical exemptions deserve our support and our protection in the form of herd immunity. We need to ensure that all children can attend school without fear and we need to do it now.

In the News: UK Eliminates Measles

Global health officials are reporting that the United Kingdom has successfully eliminated measles.

Measles vaccinations saw a steep drop off in the years immediately following Andrew Wakefield’s fraudulent reports, but have since been on the rise as more children receive the MMR vaccine.

Does an elimination mean the end of measles? Not exactly. When health officials report on the elimination of a disease, it means that a particular geographic area is free from that particular disease. In the UK, there have been no freely circulating measles cases in three years.

However, that doesn’t mean that measles can’t get a toehold in the UK. Because of the damage done by Andrew Wakefield, a sizeable portion of the population who were toddlers in the years immediately following his discredited report never received their MMR vaccine.

As in the US, most measles outbreaks in the UK are acquired abroad from countries that do not have a robust measles vaccination program. When those two populations encounter each other, such as at a music festival, outbreaks can still occur.

In order to keep the measles out, vaccination rates need to be 95%. It is recommended that everyone receive two doses of the MMR vaccine. Hopefully, our friends in the UK will have better luck keeping their elimination status than we did. The US achieved measles elimination in 2000 only for the disease to come back thanks to falling vaccination rates.

To learn more about how measles is spread, check out this infographic from the CDC: measles

 

 

Vaccine Advocacy

The anti-vaccination movement has been able to grow in part because those who support vaccines have not been vocal. Those who do not support vaccinations have largely been written off as a fringe movement, and it has allowed their numbers to swell at the risk of public health.

To be sure, there are several health organizations dedicated to promoting vaccines as safe and effective. There are those out there trying to reach vaccine hesitant parents who might be unsure of who to trust. But at the parent level, we are largely only just beginning to fight back against misinformation that endangers us all.

What can one person do? Turns out, one person can do quite a lot. Here are some ideas on how to advocate for vaccines in your area.

  1. Speak up! Whether it’s in the Facebook comments section or in a local moms group, if you hear something wrong, say it. The people on the sidelines need to know that vaccines are safe, effective, and necessary to protect our communities.
  2. Write and call your state representative and senator. Let them know that you support vaccines and that you know the way to increase our vaccination rates is through the elimination of non-medical exemptions.
  3. Meet with your elected officials and their staff. Ask them to support a bill similar to California’s SB277. In South Carolina, we have religious exemptions, not personal or philosophical. California is not the only state to do away with non-medical exemptions. Both Mississippi and West Virginia allow only medical exemptions, and their definitions of what constitutes a medical exemption are fairly narrow. Follow up with the staffer, thanking them for the meeting and recapping your discussion.
  4. Write letters to the editor detailing the risks of not vaccinating, especially if you are the parent of a child or an individual who cannot be immunized.
  5. Find like-minded people in your area and organize campaigns to do steps 2-4 as a unit. Numbers matter to elected officials and newspaper editors. The more people who are vocal about vaccines, the more consideration your request will be given.

This list is by no means all-encompassing, and if you have other ideas, shoot us an email at info@vaccinatesc.org.

Religious exemptions lower herd immunity

A recent article appeared in the Post and Courier detailing the rise of religious exemptions and the threats that they pose to public health. To understand the role that religious exemptions play in herd immunity, one must first look at various vaccine-preventable diseases and the levels of immunity required to keep the disease at bay.

Herd immunity happens when a community is protected against outbreaks because a large portion of the population is immunized. For example, measles and whooping cough both need about 95% of the population to be immunized in order for those who cannot be immunized to be safe from an outbreak. To illustrate how herd immunity works at various levels of immunization, Redditor theotherredmund created the following gif.

giphy

The red lines are the disease. Blue dots are those who are unvaccinated and the yellow dots represent people who have immunity. Low vaccination rates mean lots of sick people, but when vaccination rates are high, it’s hard for a disease to really take off.

When people who can vaccinate opt out, it lowers the herd immunity. You might be thinking that 8,074 people isn’t that many, but think about the types of people we’re talking about: school age children. I don’t know about you, but my preschooler and toddler are not exactly known for their sanitation skills. The unvaccinated are likely groups of siblings attending the same school or daycare. Even a handful of families clustered in the same school could wreak havoc on that school’s herd immunity.

So, who does that endanger? Well, sort of everyone, but certain people are more at-risk than others. No vaccine is 100%, and short of having your titers checked (recommended), you don’t know if your vaccines took, so to speak. For most people, the answer is that their vaccines are effective though.

That leaves the at-risk groups. People who have weakened immune systems. These are your individuals undergoing cancer treatments, newborns, pregnant women, the elderly, people who have had organ transplants, people with immune diseases. If you are a parent whose child had a liver transplant as a baby, if you’re the pregnant parent of kindergartener, if your child recently went through chemotherapy, the idea that measles could take off in your school is terrifying. Those individuals will have a significantly harder time fighting off any potential infection.

People who don’t support vaccination like to frame this as a matter of parents’ rights to choose. They exploit the religious exemption to achieve their goal of attending public school without contributing to that school’s herd immunity. The at-risk groups have no choice. They are at the mercy of those around them. We each have an obligation to those around us, and so long as we allow non-medical exemptions to continue, we fail the most vulnerable among us.

Who we are and what we do

Hey y’all! We are South Carolina Parents for Vaccines.

This page was born of a need for local pro-vaccine advocates in South Carolina because we believe that all children have a right to health. We are parents who believe that vaccines are a crucial part of public health, and we want to increase South Carolina’s vaccination rates through education, partnerships with healthcare providers/organizations, and through seeking the end of non-medical vaccine exemptions.

If you agree, like our Facebook page, follow us on Twitter (@vaccinateSC) and Instagram (@vaccinatesc), and send us an email if you want to get involved (info@vaccinatesc.org).

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