A Thoughtful Choice

17 04 2014

I remember lining up at school in the ‘60s to get vaccinated against smallpox and a few other diseases for which there were vaccines.

I also remember the years when my brothers and I took turns at getting measles, mumps and other diseases for which there were no vaccines.

In the end, we three were fortunate—no permanent harm from our maladies.

Fast-forward 30 years. My daughter was four months old when she was diagnosed with hepatitis B. She had not been vaccinated and subsequently developed a chronic infection.

It all sounds mundane when read as words on a screen. But in those early years, the heartache and anger I felt at having my daughter’s life so affected by something that was preventable . . . well, it was almost more than I could bear.

But again, we were fortunate. After years of infection, her body turned around and got control of the disease. Although we have bloodwork done every year to keep an eye on things, she has a good chance of living the rest of her life free of complications from this infection.

Over the years, I’ve met other parents whose children were affected by vaccine-preventable diseases. Some, like Kelly and Shannon, chose not to vaccinate their kids and ended up with horrible consequences. Kelly’s son Matthew was hospitalized for Hib and they came within a breath of losing him. Shannon did lose her daughter Abigale to pneumococcal disease, and almost lost her son. He recovered and was released from the hospital, at which time they had a funeral for their daughter.

Because of my job, I talk to and hear from many families with similar stories. Some children have died, some remain permanently affected, and some have managed to recover.

Also because of my job, I hear from parents who believe vaccines are not safe, and that natural infections are the safer choice. I understand and have experienced the emotions we as parents feel when something happens to our children. In a way, I was lucky. I knew exactly what caused my daughter’s problems. A simple test provided a definite diagnosis.

If we can’t identify the cause of our children’s pain or suffering, we feel like we can’t fix it and we can’t rest until we know the truth. When the cause can’t be found, we latch onto if onlys. What could we have done differently to keep our kids safe? If only we hadn’t taken her to grandpa’s when she didn’t feel good. If only we hadn’t vaccinated him on that particular day. If only. The problem is, the if onlys are guesses and no more reliable routes to the facts than playing Eenie Meenie Miney Mo.

The deeper I go into the world of infections and disease prevention, the more obvious it is to me that the only way to find the facts is to follow the science. Now granted, one study will pop up that refutes another, but I’ve learned that when multiple, replicable studies all reach the same conclusion, then I can safely say I’ve found the facts.

In our family, we vaccinate because for us, it is the thoughtful choice.

By Trish Parnell

Originally posted on Parents Who Protect





Pneumo – It’s All About the Numbers

3 03 2014

DDWhen we are immunized, we usually have to get several shots, or doses, before we’re protected against a disease.

Nearly all vaccine-preventable diseases require more than one dose of vaccine to provide us with a strong immune response. It’s not fun, but it’s better than fighting all those infections.

Last summer, an article in Pediatrics described a study which looked at the cost-effectiveness of removing a primary dose of 13-valent pneumococcal conjugate vaccine (PCV13).

This vaccine helps to prevent pneumococcal infections, which can mean anything from an ear infection to pneumonia to meningitis. It can be a dangerous and deadly infection.

Right now, this vaccine is a four-dose series. The first three doses are primary doses, and the fourth dose is a booster.

A primary dose “primes” the immune system, allowing our bodies to develop stronger immunity with each primary dose we receive. The booster dose is the last shove to get us over the top, helping our bodies to develop long-lasting immunity against a particular disease.

The study in Pediatrics was the topic of conversation at PKIDs for several weeks, and, while we were surprised that removing a dose was up for consideration (and you’ll see why in a minute), we thought it was probably more of an intellectual exercise than a course of action that our public health leaders in the US would take.

After all, our tradition in the US is to use all of the tools we have to protect our citizens and prevent infections.

Come to find out, this is more than an exercise in “what if.”

In February, I attended the Advisory Committee on Immunization Practices (ACIP) meeting in Atlanta.

(As noted on their website, the ACIP “is a group of medical and public health experts that develops recommendations on how to use vaccines to control diseases in the United States. The recommendations stand as public health advice that will lead to a reduction in the incidence of vaccine preventable diseases and an increase in the safe use of vaccines and related biological products.”)

Based on that meeting, it sounds like they’re looking at removing a primary dose as a real option.

This may give us an opportunity to save money—$400 to $500 million—but it’s not a risk-free deal. In order to save that money, we have to be willing to see harm come to a lot of people.

This flies in the face of what we, as health advocates, say every day to the folks we meet, which is: Get immunized! Use the safe and effective prevention tools available to protect yourself and your family from unnecessary infections.

It’s easier to make this kind of money-saving decision if the conversation is all about the numbers: the dollar amount saved, the numbers of increased cases of disease, the numbers of hospitalizations and deaths.

Numbers are easy to talk about because they’re not personal.

But this decision to remove a primary dose of vaccine is personal. The consequences will be felt by our people, our loved ones, our friends, and our neighbors. We can’t dehumanize this process by just talking about the numbers.

If the third primary dose is removed, an average of 2.5 more people will die each year. Who are those people? One could be my niece, Millie, who’s just learning to crawl. Another could be your grandson, who loves cheerios and bananas.

Forty-four more people will get invasive pneumococcal disease. My daughter could get meningitis, and your son could get a bloodstream infection.

Fifteen hundred more people will be hospitalized for pneumonia. When my oldest was a toddler, she was hospitalized for pneumonia. It’s a terrifying experience and one that I would not have anyone else go through, if possible.

An additional 10,000 of our friends and neighbors and loved ones will have to be treated for pneumonia as outpatients.

Twenty-three hundred more ear tubes will have to be inserted into the tiny ears of children that we know.

A staggering 261,000 more children will get earaches, fevers, and possibly ruptured eardrums.

All of this happens if we decide to save money and remove a primary dose of PCV13.

It’s all about the numbers. We just have to decide which numbers are more important to us as a nation—the dollar amounts or our people?

by Trish Parnell





Flu Then and Now

12 12 2013

The CDC came out with a lot of flu info today. Here’s a rundown on the highlights with a link to the rest at the end of the post:

CDC says that during last year’s flu season, 45 percent of the U.S. population aged 6 months and older was vaccinated against flu.

Influenza vaccination during 2012-2013 prevented 6.6 million illnesses, 3.2 million medical visits and 79,000 hospitalizations. Overall, this resulted in 17 percent fewer illnesses, medical visits, and hospitalizations than would have happened without flu vaccination.

The numbers are big, but the percentage is small. We need to increase the numbers of those vaccinated, and we need to come up with a more effective vaccine.

CDC estimates that during 2012-2013, there were 31.8 million flu-associated illnesses, 14.4 million medically attended illnesses, and 381,000 hospitalizations in the United States.

As for this year, CDC is recommending that those who have not yet been vaccinated do so. It takes about two weeks after vaccination for the body to develop immunity.

Most years, the flu season in the US peaks between January and March, which is reason enough to get immunized in December.

This year looks to be typical. Get vaccinated now and save yourself and your family the misery of infection.

The recommendation is that everyone six months of age and older get immunized against flu.

Visit the CDC Flu website for more info: http://www.cdc.gov/flu/





I’m Immunized! (Pass it on!)

12 11 2013

At PKIDs, we have seen the awful reality of children affected by preventable disease: horrible illnesses, hospitalizations, chronic infections, and sometimes death. C

We share our stories with the hope that others will learn from them and get their families fully vaccinated to protect themselves and the ones they love.

In the same way that we are intimately familiar with the harm that comes from not vaccinating, we are also joyously aware of what happens when a family is fully vaccinated.

We want families to understand that getting vaccinated isn’t just about avoiding the horrors of disease. It’s also about experiencing the happiness of health.

Our I’m Immunized! campaign is a visual depiction of immunized people living happy, energetic lives.

We invite you, as immunization advocates, to share these images through your social media platforms, and to use them in your organizations’ educational outreach.

Immunization advocates at PKIDs share their families’ personal stories of illness and loss with the hope that those who hear the stories will be motivated to protect themselves and their loved ones through vaccination.

We humans are certainly motivated by empathy for others and a feeling of vulnerability for ourselves and those we love.

We are also motivated by positive messages that make us aspire to attain positive goals.

Both approaches may be effective, as noted by Angela Y. Lee and Jennifer L. Aaker in Journal of Personality and Social Psychology: “A positive frame that promotes something desirable is more effective than a negative frame that laments the absence of something desirable. At the same time, a negative frame that threatens the onset of something undesirable is more effective than a positive frame that promises the absence of something undesirable—a concept known as ‘regulatory fit’.”

RRAs parents, we at PKIDs share the realities of vaccine preventable infections with those who question the need for protection by immunization. We also propose to share the benefits of a vaccinated life.

Staying healthy is good. When you’re healthy, you can play and party and easily tackle life’s challenges. Vaccinating is a beneficial choice because it makes one’s life healthier and therefore happier. Adding that messaging through the I’m Immunized! campaign to our current communications mix is just what we all need to help spotlight the positive aspects of vaccination.

We encourage you to send us pictures (pkids@pkids.org) of family members of various ages who have been immunized. We’re looking for good, impactful photography. We will format them and add them to the growing library of images depicting the positive that comes through immunization.

Or, upload your pictures to your social media platform of choice (Google+, Instagram, Facebook, Twitter, etc) and use the hashtag #I’mImmunized! or, #We’reImmunized! if there’s more than one of you in the photo.

We’d love to hear or see how you’re using these images to promote immunization. Share with us directly at pkids@pkids.org, or in the comment section below.

Thanks!





Universal Immunization Symbol

5 11 2013

immunize_rgb_fullcolorGood news! The universal immunization symbol is ready and available for use by all immunization advocates.

It is designed for all immunization organizations and advocates to display as a way to show solidarity in their awareness of and support for immunization.

The concept is that, just as a pink ribbon is associated with breast cancer, and a puzzle piece with autism, so this image is the recognized symbol of immunization. Organizations are encouraged to work together and use this symbol as a statement of broad support of immunization.

It is a reflection of all of our voices and is a solid addition to each organization’s individual image library. The symbol does not replace organizational or campaign logos, but is rather a symbol to be used when we wish to collectively present a united front in support of immunization.

The symbol’s use is limited only by our imaginations. It’s envisioned that the image will be used on anything from Web sites, brochures and other print materials, to T-shirts, pins, and social media sites.

In the spring of 2013, immunization coalitions around the country voiced a desire for a universal symbol. Putting thought into action, a small group representing the coalitions worked together to identify several potential designs.  These designs were put forward, and through a public vote, this symbol was chosen.

The umbrella, representing protection of the community, tells the story of the power of immunizations. The symbol, in several formats, is housed on Google Docs, and is available to all immunization advocates as a free download.

In addition to the logo in full color, black, or white, there is also a Style Guide and Read Me guide on how to download and use the symbol: https://drive.google.com/folderview?id=0B07MTd0yDhmyY05hTFFFRElITTg&usp=sharing

For questions, please contact one of the following:

 

Joanne C. Sullivan, RN, BSN

Pennsylvania Immunization Coalition

joanne.sullivan@immunizepa.org

 

Lynn Bozof

National Meningitis Association

lynn.nma@gmail.com

 

Litjen (L.J) Tan, MS, PhD

Immunization Action Coalition

lj.tan@immunize.org

 

Trish Parnell

PKIDs

pkids@pkids.org

 

 





Whooping Cough – How Quickly it Spreads

10 12 2012

This Seattle mom shares the story of her infection, and consequently, that of her newborn son.





Orange Nose Day is 5 October 2012!

20 08 2012

Orange Nose Day is just around the corner!

One day a year (October 5th), health educators don an orange nose and start talking. And here’s why . . .
 
Most days of the year, educators get out there and talk the talk, saying the same things repeatedly: wash your hands, get immunized, floss, eat fruits and veggies, and so on.
 
When we hear these messages often enough, they become white noise.
 
But, somebody puts on an orange nose and turns to us with the same messages, we start smiling and we’re all ears. That’s the spark that created Orange Nose Day.
 
If you have a health message to share, visit www.orangenoseday.org, get an orange nose on your photo, and use that photo on your social media sites come 5 October. Also, join the collaborative by sending in your organization’s logo and become a partner on the website!
 
The Orange Nose Day collaborative identifies five steps to good health and encourages you to add your own. The day isn’t about any particular message, but about sharing whatever health message you want your patients or public to hear.
 
There are lots of downloadables, including posters, web banners, and stickers, that are available free of charge on the site.
 
Hey, there are plenty of reasons to not kid around when we’re talking about health, but occasionally bringing a little levity to the message is a good thing.
 
Come, join the fun.





Mat Releases are Good!

11 06 2012

We’ve all written more press releases than we can count, and they do the job they’re supposed to do. But, here at PKIDs, we’re also quite fond of mat releases. They reach smaller publications by the hundreds and chances are, the words we write will get published without editing.

They’re a good way to get our news into communities across the country.

A mat release is a short feature story (approximately 400 words) written by you or someone in your organization. It’s distributed to small regional or local daily or weekly newspapers through a service such as NAPS or PR Newswire.

The story is usually run as-is by the editors, but is sometimes given a little editing. Small newspapers like mat releases because most don’t have the budgets to hire enough reporters to create all the features they need or would like, and a mat release is a ready-made story.

Mat releases are usually not too topical, as they take time to get into circulation and they’re picked up and used by editors for months after the release date.

If you include some sort of contest or other fun component in your mat release, it will increase the likelihood of its being picked up by editors. This isn’t always possible, but keep this approach in mind.

Artwork (usually a photo) will need to be included in any mat release you distribute. Editors love artwork and will sometimes use a story, or a bit of it, just to get artwork into their papers.

What A Mat Release Isn’t

Mat releases are not press releases. In a mat release, you share information in the format of a feature story that is of value or interest to a large group of people. You don’t “advertise” your services or products.

Cost

As a nonprofit, you should get a discount from the distributor. Even so, mat releases aren’t cheap—costing about $5,000. The upside is that they eventually reach lots of readers, so they’re considered a solid way to spend funds.

Writing

Distributors work with you on the writing of your mat release. They want you to be happy and will be diligent about editing and improving your work, if you need the help.

You have about 400 words to tell a story and share your important information.

Sample Mat Release (writtten for a program we did a few years ago, with notes on content)

Silence the Sounds of Pertussis

(The headline matters, so take your time to come up with something of interest.)

(NAPS)—New parents know to vaccinate their babies to protect against a number of childhood diseases. But what about vaccinating themselves to keep from spreading illnesses to their child? (This makes readers curious, so they want to read further.)

Most parents do not think of whooping cough, also known as pertussis, when they think of potential threats to their child’s health. However, this disease is making a strong comeback in the U.S., with a total of more than 25,000 reported cases in 2004 alone. (A strong fact that sets the expert tone of the piece and lets the reader know this is a serious problem.)

Luckily, there is a simple way to ease new parents’ minds: immunize mom and dad with the whooping cough booster. (They’ve heard the problem, and now they know there’s a solution. They want to find out more.)

Because of the growth of this disturbing trend, new mom and award-winning actress Keri Russell is teaming up with the nonprofit organization, Parents of Kids with Infectious Diseases (PKIDs), to launch a public awareness campaign: Silence the Sounds of Pertussis. The initiative aims to educate new parents about the dangers of this disease (especially to babies), and to encourage them to get the Tetanus, Diphtheria and Pertussis booster (called the Tdap vaccine) to keep their babies safe. (Here’s your solution to the problem: Talk about your program, clinic, or other topic you want people to know about.)

A recent study out of the University of North Carolina found that parents are the source of more than 50 percent of infant cases of whooping cough.

“When I found out that parents were infecting their children with this dangerous disease, I asked my doctor what I could do to prevent it from happening to my infant son,” Keri Russell said. “He recommended that my husband and I get the Tdap booster.” (Get some quotes in the piece from spokespersons/experts as this helps keep it personal.)

The Tdap is strongly recommended by the CDC for anyone who has close contact with a baby.

In adults, whooping cough symptoms often disguise themselves to look like a common cold, making the disease difficult to diagnose and easy to spread. (More facts to enhance the piece.)

Babies under 12 months of age are not only the most vulnerable to whooping cough, they are also the age group for which the infection is most life-threatening. Babies too young to have completed their primary vaccine series account for the majority of pertussis-related complications, hospitalizations, and deaths. In fact, more than 90 percent of pertussis-associated deaths were among babies less than six months old.

“The good news is that whooping cough is a problem that has a solution,” said Dr. Gary Freed, Professor of Pediatrics at the University of Michigan Medical School. “If every new and expectant parent receives the Tdap booster before or immediately after the birth of their baby, we could really reduce the risk of young babies getting whooping cough. If you provide care for a baby, talk to your doctor about how to protect him or her from pertussis.”  (The “ask” or what you want the reader to do.)

For more information on how you can help Silence the Sounds of Pertussis, visit the PKIDs website. (Give them contact information so they can find out more.)

Bottom Line

Are mat releases worth the cost?  Yes, if you can include that cost in a grant budget, it is worth it. Mat releases stay out for months and continue getting picked up long past the point you’d think they would. This release that we’re sharing in the blog ran for months and months. We were surprised (and happy) at the shelf life it had, and at the number of editors who ran it.

If you have any mat releases you’d like to share with others, put them in the comments section. We’d all benefit from seeing them!

Remember, these are not advertisements or advertorials. Keep them as features full of information people want, and editors will pick up the stories.

This article comes from PKIDs’ Communications Made Easy program.





Hepatitis A, B, C, D, and E

10 05 2012

The month of May is well-used. Mother’s Day is in here. May Day too, of course, along with graduations galore and, not insignificant for us, a date with the IRS that nonprofits shouldn’t miss.

It’s also Hepatitis Awareness month, although World Hepatitis Day is in July. We can’t explain why.

The important part is that we can use this month to remind moms and dads that hepatitis is around and some of it can be prevented by vaccination.

Hepatitis C is a bloodborne virus that attacks the liver. It is not vaccine-preventable. If babies are infected it’s usually from their hepatitis C+ mothers or, and this is unlikely these days, from a blood transfusion. It’s unlikely because the screening process of donated blood is pretty darn thorough. But, germs have slipped through that screening process.

Teens and young adults may become infected, primarily through sharing of needles, sex with an HCV+ person, or sharing personal items such as razors or toothbrushes that may be contaminated with HCV.

There are effective treatments that work on a good portion of hepatitis C-infected children. But not on all infected children. Work is ongoing in this area.

Hepatitis C is frequently a chronic infection, meaning that if treatment is not effective, you will be infected for your lifetime.

Hepatitis A is vaccine-preventable. Normally, it’s passed person-to-person through the fecal-oral route, which is when something you eat or drink has been contaminated with hepatitis A+ poop. If you haven’t been vaccinated, chances are you will become infected.

This virus makes you feel lousy and can, rarely, do serious damage to the body. It does not become a chronic infection. It infects you and then goes away, like a cold virus.

Hepatitis B is vaccine-preventable. It’s transmitted in a lot of ways—mom to newborn, sharing needles or personal items, sex with an infected person, even household (nonsexual) contact. If a mom is aware of her infection prior to giving birth, shots can be given to the baby within 12 hours of birth that are effective at stopping tranmission of the virus from mom to baby. However, when babies are infected, almost half of them in the US will become chronically infected. In developing countries, that figure shoots up to 90 percent.

Today, despite the vaccine, approximately 1,000 babies become chronically infected with hepatitis B each year in the US. Many of the moms-to-be who are infected are unaware of their infection. Every pregnant woman should be tested for hepatitis B so that action can be taken at birth to prevent infection of the newborn.

Hepatitis D is an odd virus. You have to be infected with hepatitis B before you can get hepatitis D. It’s vaccine-preventable in that, if you get immunized against hepatitis B, you won’t be able to get hepatitis D.

Hepatitis E is similar to hepatitis A in the way it is transmitted—the fecal-oral route. It’s rarely a chronic infection. For most people, they get it, get sick, and get over it. It can however be dangerous for pregnant women, with a 10% – 30% fatality rate for this group. It’s not often found in the US but can be easily picked up in some other parts of the world.

That’s about it for hepatitis in the US. To prevent a hepatitis infection (and lots of other infections), wash your hands throughout the day, put barriers between yourself and another person’s blood or body fluid, and use the available vaccines. The trick is to do these things with everyone. It’s impossible to tell who is infected with what, most of the time, so the safest course of action is to assume everyone is infected with something and then act accordingly.

Got any tips? Hope you share them will us in the comments.

By Trish Parnell

Image courtesy of Johns Hopkins





Rebecca’s Son

24 10 2011

(Christopher died from a devastating case of chickenpox. His mom, Rebecca, shared her son’s story until the day she died, and we’d like to share it with you. This is taken from testimony she gave to a U.S. House of Representatives’ committee.)

My name is Rebecca Cole, and I am the mother of five children. I am speaking to you today because I have faced the worst nightmare any parent can possibly face. There is no experience on earth that compares to the horror and devastation of losing a child. It is shattered dreams, crushed wishes, and a future that suddenly vanishes before our eyes. It cannot be wished away, slept away, prayed away, or screamed away. It is darkness, agony, and shock. It leaves our hearts broken, bleeding, and bursting with pain.

My life changed forever on June 30, 1988, when I had to stand by helplessly as an infectious disease claimed the life of my oldest child, Christopher Aaron Chinnes, at the age of 12.

Christopher was a beautiful little boy who had light blonde hair, and deep, brown eyes. He was full of compassion, joy, and energy. He loved baseball, and every living creature on the earth. He wanted to be a scientist or doctor. I can honestly say that my son was one of the most beautiful human beings I have ever known, and I am proud to have been his mother.

Christopher was born a very healthy child, but at the age of eight he developed asthma. It was never a problem for him, and it never kept him from doing the things he loved. But, on June 16, 1988, four years after he was diagnosed, he suffered his first and only severe asthma attack. He had to be hospitalized and was treated with all of the normally prescribed drugs, including a corticosteroid. (Anti-inflammatory drugs used in asthma, arthritis, allergies, etc.) He was released four days later with several medications to finish at home, and he was well on his way to recovery.

On June 23, exactly one week after the asthma attack, he broke out with the chickenpox. “Don’t worry, you’ll get over it,” I told him. What I didn’t know was that the corticosteroid had lowered his body’s immune response and he could not fight the disease. The chickenpox began to rampage wildly through his young body. As I drove him to the emergency room, on June 27, my four younger children watched silently in shock and horror as their brother went into seizures, went blind, turned gray, and collapsed due to hemorrhaging in his brain.

That afternoon, Christopher was flown from Camp Lejuene’s Naval Hospital to East Carolina University’s Medical Center, but the chickenpox was uncontrollably sweeping through him like a wildfire, and there was nothing anyone could do.

The next day Christopher suffered a cardiac arrest and slipped into a coma. As my son lay swollen beyond recognition, and hemorrhaging from every area imaginable, including out into the blisters on his skin, I learned that a vaccine existed, but was not yet licensed by the FDA—a vaccine that could have prevented the unimaginable suffering of my child, and all who knew him.

On June 30, 1988, exactly one week after breaking out with chickenpox, Christopher passed away. The chickenpox virus had destroyed every organ in his body, and it cut pieces from the hearts of everyone who witnessed its devastation.

Christopher wanted to be a scientist or doctor, but because of the unavailability of a vaccine, we will never know what contributions he might have made to society.

Vaccines prevent countless deaths each year. Without them the number of valuable human beings we’d lose would be staggering. There are children and adults who come in contact with the public everyday who would die if they were exposed to the diseases we can prevent.

If everyone around them is vaccinated, they are also protected. We owe it to them and to ourselves as a nation to achieve the highest level of protection possible. We must win the war against infectious disease, and vaccines are our most powerful weapons. We cannot win, however, if we do not use them. Leaving any of our population unprotected is like surrendering to a defeatable foe. We must never surrender.

Rebecca Cole








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