CDC Asks for Help

28 06 2012

(From the CDC and HHS)

June 26, 2012

Dear Pharmacists and Community Vaccinators,

Thank you all for your tremendous efforts this past year to raise immunization rates in the United States. Outbreaks of pertussis (“whooping cough”), influenza, and measles, and continued low vaccination rates for human papillomavirus (HPV), Tdap (tetanus, diphtheria, and pertussis), zoster vaccines and others are critical reminders of the ongoing efforts that are needed.

Pharmacists and community vaccinators are uniquely positioned to promote and provide vaccines to people in a wide range of communities. In addition, their extensive reach into diverse communities allows greater access to vaccines for those who may not have a medical home, and who traditionally have had lower rates of vaccine use.

The Centers for Disease Control and Prevention (CDC) and the Department of Health and Human Services (DHHS) ask for your continued support and efforts to help address vaccination needs in your communities. We know you are asked to do a lot to help your patients, but as trusted health care professionals, research shows that your recommendation to receive needed vaccines is vital.

As just one example, only about 10 percent of adults living with an infant report having had Tdap vaccination.1 But, a 2012 survey conducted by Harris Interactive found that 45% of unvaccinated adults who have been in contact with babies under 2 years in the past 5 years or expect to be in contact with them in the next 12 months would consider getting Tdap vaccine if a family member asked. However, 83% would consider getting Tdap vaccine if they were asked by their doctor or other healthcare professional.2 These results underscore the importance of your recommendation for protecting your patients and their families.

Specifically, CDC and HHS are asking pharmacists and other vaccine providers to:

1. Increase awareness among their patients about recommended vaccines, especially for adults and adolescents where vaccination rates are lagging.

2. Ensure that the people who visit your pharmacies or clinics are aware of which vaccinations they need by assessing their vaccine needs and offering those vaccines, e.g.:

a. Offer Tdap vaccine to replace one dose of Td. This is especially important for anyone who will be around infants given outbreaks of pertussis in the United States.

b. Inform pregnant women that they are recommended to receive Tdap vaccine after week 20 of pregnancy and influenza vaccine anytime during pregnancy.

c. Offer yearly influenza vaccine for everyone 6 months and older.

d. Offer zoster vaccine for adults 60 years and older.

e. Offer pneumococcal polysaccharide vaccine for everyone 65 years and older.

3. For patients with certain medical conditions, recommend and offer vaccinations specifically recommended based on their high risk conditions, e.g.:

a. Remind patients with diabetes that they need influenza vaccine, pneumococcal polysaccharide vaccine, and hepatitis B vaccine.

b. Consider targeting immunization messages to patients within your prescription database based on their medications and/or age.

c. Incorporate immunization reminders to patients and caregivers during counseling and medication therapy management (MTM) encounters.

4. Enter adult immunizations into vaccine registries (i.e. immunization information systems) in states where this is possible and provide documentation to the patient (consent form and/or immunization card) and/or their primary care provider to ensure appropriate recording of immunizations.

5. Partner with state and local health departments, immunization coalitions, medical providers, and others in your communities to increase collaboration and outreach to those who need vaccines.

Details about the vaccines recommended for adults and for children can be found at:

http://www.cdc.gov/vaccines/ and an adult scheduler and “quiz” for patients to find out which vaccines they may need can be found at http://www.cdc.gov/vaccines/schedules/Schedulers/adult-scheduler.html. Additional information about pertussis for patients and healthcare professionals can be found at www.cdc.gov/pertussis/index.html.

Additional links to find contacts for state and local health department immunization programs and coalitions, and educational resources for vaccine providers and patients are included below.

Thank you, again, for your energy, enthusiasm, and efforts in improving the health of our communities.

Sincerely,

Anne Schuchat, MD

RADM, US Public Health Service

Assistant Surgeon General

Director, National Center for Immunization and Respiratory Diseases

Immunization education and outreach resources and links to identify contacts in state immunization programs and immunization coalitions

State immunization program managers

These individuals are the state point of contact for immunization efforts and are usually housed within the state health departments.

Further information is available at the following link: http://www.immunizationmanagers.org/about/index_about.phtml

Vaccines for Children (VFC) Program

The VFC program is a federal program that provides vaccines to uninsured children at no cost to the child or their family.

Information on contacts for the VFC program in each state and certain cities is available at the following link: http://www.cdc.gov/vaccines/programs/vfc/contacts-state.htm

Further information about Vaccines for Children Program is available at:

http://www.cdc.gov/vaccines/programs/vfc/default.htm.

Information addressing pharmacists and the VFC program is available at:

http://www.cdc.gov/vaccines/programs/vfc/projects/faqs-doc.htm#enroll

State vaccine registries/immunization information systems

Can your pharmacy participate in your state’s immunization registry? Contact the state immunization registry person to find out if this is an option in your state. Participating in state immunization registries can greatly help facilitate communication about vaccination between providers.

Further information is available at the following link:

http://www.cdc.gov/vaccines/programs/iis/contacts.htm

Immunization coalitions

There are numerous immunization coalitions around the country, pulling together partners from diverse sectors to unite efforts to improve immunization rates.

Further information about linking to coalitions is available at the following site:

http://www.izcoalitions.org/

Free communications resources

CDC produces a variety of resources to promote immunizations, such as print materials, audio/video tools and web tools that can be downloaded free of charge. Immunization campaign materials can be found at http://www.cdc.gov/vaccines/campaigns.htm and support childhood, adolescent and adult immunization with some materials also available in Spanish.

The Immunization Action Coalition has many different handouts on a variety of vaccines that can be downloaded free-of-charge from their website. More information can be found at: http://www.immunize.org/handouts/.

National, regional, and state Offices of Minority Health contact information

The US Department of Health and Human Services has both federal and regional Offices of Minority Health and states also have Offices of Minority Health.

Pharmacies interested in collaborating with these offices to reduce disparities in vaccination may contact these offices at the following links.

Office of Minority Health, Office of the Secretary:

http://www.minorityhealth.hhs.gov/templates/browse.aspx?lvl=1&lvlID=7

Offices of Minority Health in Regional Offices:

http://www.minorityhealth.hhs.gov/templates/browse.aspx?lvl=2&lvlid=188

Offices of Minority Health in States:

http://www.minorityhealth.hhs.gov/templates/browse.aspx?lvl=2&lvlID=187

Interactive adult and child schedulers

Do you know about the interactive adult and child schedulers? Immunization schedules are complex….and always changing. The CDC website has tools that allow you to enter key patient information and produce an individualized immunization schedule. Patients really like to see that one-of-a-kind individualized, customized set of immunization recommendations, along with their pharmacist’s recommendations.

Further information regarding the schedulers is available at the following link: http://www.cdc.gov/vaccines/programs/default.htm.

Preventing Vaccine Administration Errors

As a refresher for healthcare providers on correct vaccine administration technique and vaccine-related adverse events, please consult these resources:

1. Guidance from the Pink Book:

http://www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/D/vacc_admin.pdf.

2. Quick Fact Sheet: http://www.immunize.org/catg.d/p3085.pdf.

3. Vaccine Administration Technique video: http://www.immunize.org/dvd/.

4. Institute of Medicine report on Adverse Effects of Vaccines: http://www.nap.edu/catalog.php?record_id=13164#toc.

To report adverse events, see the Vaccine Adverse Events Reporting System at: http://vaers.hhs.gov/index.

Immunization training offerings

CDC invites pharmacists to take advantage of CDC immunization training offerings. The most recent summary of all the new immunization developments and recommendations can be found in CDC’s Immunization Update 2012, scheduled for August 4, 2012.

Please visit the following link for further information:

http://www.cdc.gov/vaccines/ed/imzupdate/default.htm

These programs supplement pharmacist-specific immunization education programs provided by pharmacist associations. Check with your pharmacist association for additional training and support resources such as web-based immunization resources, discussion groups and electronic newsletters.

1 Centers for Disease Control and Prevention (CDC). Adult Vaccination Coverage — United States, 2010. Morb Mortal Wkly Rep 2012;61(04);66-72. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6104a2.htm.

2 Online survey of 4,247 adults ages 18 and older, of whom 237 were parents of children aged 2 and under, conducted by Harris Interactive on behalf of Sounds of Pertussis®, May 9-11 and May 11-15, 2012.





A Mother’s Legacy

25 06 2012

I would like to tell you about my mother and all mothers like her who suffered through the loss of a child from an infectious disease. Raising a family in the hills of Kentucky, where most people were too poor to pay for the little, if any, medical help available, my mother struggled to keep her family healthy.

When one of her babies became seriously ill, my mother and her parents did everything they could to try and help her. Despite their efforts, my mother watched her child, Patsy Lynn, die from whooping cough. While making arrangements for Patsy’s funeral my mother learned that another one of her children was gravely ill. Both children were buried on the same day, in the same casket, in the same grave next to my mother’s church.

After the death of two children, my family was able to relocate to the Cincinnati area where medical attention was more readily available. We all had our vaccines as my mother was determined not to lose another child to unseen viruses and she insisted on washing and boiling everything that we touched.

I lived through the effect the loss had upon my mother’s life. The fear of disease was so real then, but many of us today forget what it was like to live in a time when diseases like measles, polio and smallpox were so much more common and deadly.

I remember the time that I was not allowed to play with a friend because her mother had been sent to the “TB hospital” and I vividly remember the Sunday that we spent standing in the long lines to receive our sugar cubes laced with the polio vaccine.

During the early ’60s, I remember being put to bed in a dark room when it was thought I might have the measles. Most of all, I’ll never forget that several of my teachers wore braces because of the effects of polio.

My mother tried her best to prevent us from succumbing to any disease which may shorten our lives, so I’m thankful that when she died of cancer in 1982 she did not know that I had somehow contracted the hepatitis B virus.

In June 1995, I was diagnosed with hepatitis B about a week before my 25th wedding anniversary. A doctor told my husband that I had a sexually transmitted disease and that he should be tested and vaccinated. What the doctor failed to tell us at the time was that this hepatitis could be spread in many other ways. I had complete trust in my husband and, thank God he had faith and trust in me, so this suggestion of sexually promiscuity did not harm our marriage.

Within the week we were informed that my husband tested negative, as did my children, who have all been vaccinated.

I have tried for years to find out where I got the virus. Could it have been from my mother who died of liver cancer? Did I get it in grade school, or from dental work, surgeries? Did I get it in one of the hospitals or clinics where I have worked as an interpreter? Did I get it from a child who ran into me on the playground, or from the little girl who bit me while I was working in the Cincinnati Public Schools?

The only thing I can be sure of is that I did not get hepatitis B from sexual contact, drug use or tattoos. However, I have now arrived at a place of peace in my life by accepting the fact that I will never know the path of transmission—and I no longer search for that answer.

And this is my mother’s legacy to me: protect your children the best you can.

By Barbra Anne Malapelli Haun





Health Info on the Web

18 06 2012

Finding disease information that is more detailed than the general consumer information available on most health websites can be a challenge. We put together these suggestions and hope they may lead to helpful info for families having to make the difficult searches.

Google Scholar Search

Google’s Scholar Search “provides a simple way to broadly search for scholarly literature. From one place, you can search across many disciplines and sources: peer-reviewed papers, theses, books, abstracts and articles, from academic publishers, professional societies, preprint repositories, universities and other scholarly organizations. Google Scholar helps you identify the most relevant research across the world of scholarly research.”

Google provides help for understanding Scholar search results. You can also specify your search result preferences (including language settings. Use the Advanced search to focus your search in a variety of ways.

National Library of Medicine (NLM)

The Hepatitis B Foundation provides an overview presentation of NLM resources that are most relevant to families searching for disease information. (Click here for a printer-friendly version.)

PubMed

The National Library of Medicine (NLM) maintains MEDLINE, a database of indexed citations and abstracts to medical, nursing, dental, health care, and other sciences journal articles. PubMed is a service of NLM that provides free access to MEDLINE (other access services may charge fees).

Knowing how to effectively use PubMed can help you get more relevant search results and prevent the results from being too numerous. NLM provides this tutorial for using PubMed. Use the column on the left to navigate the tutorial (includes “previous” and “next” buttons). Pay attention to the “MeSH Vocabulary” section—using MeSH terms will help you refine your searches.

Be aware that search results obtained through PubMed provide abstracts and citations. Sometimes pthe full text (or links to it) is provided, but often, journals require that you purchase the full text of articles. One way to reduce or eliminate this cost is to locate the journal in a library near you in order to read the article.

MedlinePlus

MedlinePlus is a service of NLM that provides consumer-level health information. Any search will reveal a variety of links to reliable sites with information on your chosen topic. In addition, MedlinePlus offers multimedia presentations on a number of disease topics.

LocatorPlus

Use LocatorPlus to search for resources in the physical National Library of Medicine. This service is mainly useful only to people who intend to go to the actual NLM and check out a resource.

Do you have some search tips to share? We’d love to hear about them!

This information was first presented on PKIDs’ website.





Microbes R Us

14 06 2012

Well, they’ve finally done it. Researchers have mapped the microbes living on humans.

Seems like they wouldn’t be hard to find, since they’re all over and in the body, but they are little—hence the “micro” part. And there are trillions of them on each of us. But, they are accountable for only 1 to 3 percent of the body’s mass. So if you weigh 180 pounds, the microbes make up between 1.8 and 5.4 pounds. Imagine. Trillions of anything weighing just 1.8 pounds.

If you think about it too much, it’ll give you the willies. Tiny critters in your nose, on your eyelashes, on your mouth, on your skin, on your lips . . . you get the idea.

Humans do have mutually beneficial relationships with some of these microorganisms. The microbes in the gut are famous for being helpful. We give them a place to live and they give us the ability to digest certain foods and produce vitamins and anti-inflammatories.

Other microbes, called pathogens, can and do cause illness in some of us. Yet many healthy people carry pathogens that don’t cause disease. Go figure.

The National Institutes of Health organized a group of researchers to map out the “normal microbial makeup of healthy humans (in the Western population).” The results of this mapping will be a bumper crop of hypotheses followed by a flood of studies which will, it’s hoped, move infectious disease research considerably further down the road.

NIH shares a bit of what’s already come out of this mapping:

CLINICAL APPLICATIONS

As a part of HMP, NIH funded a number of studies to look for associations of the microbiome with diseases and several PLoS papers include medical results. For example, researchers at the Baylor College of Medicine in Houston compared changes in the vaginal microbiome of 24 pregnant women with 60 women who were not pregnant and found that the vaginal microbiome undergoes a dramatic shift in bacterial species in preparation for birth, principally characterized by decreased species diversity. A newborn is a bacterial sponge as it populates its own microbiome after leaving the sterile womb; passage through the birth canal gives the baby its first dose of microbes, so it may not be surprising that the vaginal microbiome evolved to make it a healthy passage.

Researchers at the Washington University School of Medicine in St. Louis examined the nasal microbiome of children with unexplained fevers, a common problem in children under 3 years of age. Nasal samples from the feverish children contained up to five-fold more viral DNA than children without fever, and the viral DNA was from a wider range of species. Previous studies show that viruses have ideal temperature ranges in which to reproduce. Fevers are part of the body’s defense against pathogenic viruses, so rapid tests for viral load may help children avoid inappropriate treatment with antibiotics that do not kill the viruses but may harm the child’s healthy microbiome.

These are among the earliest clinical studies using microbiome data to study its role in specific illnesses. NIH has funded many more medical studies using HMP data and techniques, including the role of the gut microbiome in Crohn’s disease, ulcerative colitis and esophageal cancer; skin microbiome in psoriasis, atopic dermatitis and immunodeficiency; urogenital microbiome in reproductive and sexual history and circumcision; and a number of childhood disorders, including pediatric abdominal pain, intestinal inflammation, and a severe condition in premature infants in which the intestine actually dies.

All good news, but the scope of the mass of microbes on and in me still gives me the willies.

By Trish Parnell

Image courtesy of NIH





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.





Tell a Story, Change a Life

7 06 2012

When a healthcare professional explains the science behind the design and manufacture of vaccines in order to reassure moms and dads that vaccines are safe, many parents politely listen, nod, and go about their day with their thinking firmly unchanged. What they’ve just heard is abstract and they can’t relate to it. There’s no “ah-ha” moment.

When a mom whose child has died from a vaccine-preventable disease stands in front of other parents, either in person or on camera, and tells her family’s story, most parents, no matter what their beliefs are about the safety of vaccines, feel that pain, empathize with that mom, and bristle with protective feelings for their own children.

This mom that we’re listening to is just like us. She’s a normal person who’s had an exceptionally horrible experience. While watching and listening to her, we realize that the same event could happen to us. We have our “ah-ha” moment.

The evolving, or perhaps revolving, discussion around vaccine safety needs to marry the presentation of scientific fact with that of the human experience for a comprehensive picture of the need for vaccination and the results of not vaccinating.
 
Storytelling
 
Author Steve Denning in The Secret Language of Leadership discusses “narrative,” or storytelling:

“In making the case for narrative, I am in no way trying to undermine science or drag the world back to the dark ages of myth and superstition. On the contrary, I am committed to science and its self-correcting methodology. We need to apply double-blind controls in experiments, where neither the subjects nor the experimenters know the experiment’s objectives during data collection. We need to vet our results at professional conferences and in peer-reviewed journals. We should insist that research be replicated by others unaffiliated with the original researcher. In our reports, we need to include any evidence to the contrary, as well as alternative interpretations of the data. We need to encourage colleagues to be skeptical and to raise objections. If extraordinary claims are being made, we must put forward extraordinary evidence…

“…But when we’ve done all that, and it’s vital that we do it, how do we communicate the results of what we have discovered, particularly if our findings are highly disruptive to people’s lives? If we try to communicate those findings by the same methods through which the findings were derived, what usually happens? Pushback. Resistance. Cynicism. Hostility. If we use narrative intelligence…the results can be very different.

“It’s a matter of using science and analysis for what they are good at, and using the language of [narration] to communicate science’s findings and get them implemented. Just think for a moment. Would it be scientific to go on using the language of analysis for an activity for which it isn’t suited, while refusing to use a different language that does work? To adopt such an approach would be the height of unscientific behavior.”

Evan’s Story
 
Lynn Bozof, from the National Meningitis Association, shares her family’s story:

March 25, 1998, is a day that my husband and I will never forget.

It was a day marked by events that have left a permanent hole in our hearts. It was the day our son, Evan, called from college to tell us that he had a migraine headache.

Evan was 20 years old, a college junior and honor student, and a pitcher on his college baseball team at Georgia Southwestern University.

He complained of a horrible headache, the worst headache he’d ever had, and was nauseated. He said he couldn’t hold anything down. He said that the light in his dorm room hurt his eyes. Evan had never had a migraine before, but migraines do run in the family, so we weren’t overly alarmed.

By dinnertime, Evan was still feeling awful. We told him to get one of his friends to take him to the emergency room. We thought that at least he could get something for his nausea. During the next few hours, we talked to his baseball coach, who had gone to see Evan at the hospital, and the ER physician, who told us that Evan had a little virus.  The hospital had decided to keep Evan overnight so that he could have a quiet night to get more rest.

The next morning, I called Evan about 7 AM. The nurse answered, and said that Evan felt too sick to talk to me. I asked her to put the phone up to his ear. I asked him if he wanted us to pick him up and take him home for the weekend. He said he did.

Evan was on spring break, but really didn’t get much of a chance to have one because his baseball team had games scheduled during that time. We figured he must be tired, and a weekend home with us where he could rest and eat good food was what he needed. 

My husband and I were making arrangements to meet back at our house when I received a phone call just after arriving at work. I was told that Evan had meningococcal meningitis and was in critical condition.

When you get a phone call like this, your mind can’t even absorb what you’re being told. I knew so little about meningitis, that when the doctor said that it was bacterial, I thought that was the better type to have. I thought, well, at least there were antibiotics. I didn’t realize that bacterial meningitis, especially the meningococcal meningitis that Evan had, was much more deadly.

My husband and I drove the 3 hours to Evan, not knowing if he would be alive when we got there. We stopped mid way to call the hospital to check his condition. At that time, we didn’t have a cell phone to keep in constant contact with the hospital.

When we got to the hospital, administrators were waiting to talk to us. They wanted to prepare us for the way Evan looked and the criticality of his condition before we were allowed to see him. That frightened us even more.

Evan was in quarantine and was receiving oxygen with very labored breathing. He was covered with the telltale purple rash. He could barely speak; he was so tired. He told us that it took every ounce of energy he had just to roll over.

We were told that the next 24 hours were critical. My husband and I started the countdown. One hour down, 23 more to go. Calling our relatives to let them know what was going on. Trying to reach our younger son, Ryan, who was on spring break with friends in Panama City, Florida.

After a few hours, the doctors decided to transfer him to a larger hospital about 40 miles away, better equipped to handle bacterial meningitis. As he was taken to the ambulance, I said, “Love you, Evan.”  As weak and sick as he was, he said, “Love you, Mom.”  Those were the last words he said to us.

When Evan arrived at the hospital in Albany, Georgia, he was put on a ventilator and put into a drug-induced coma.  It wasn’t long before his kidneys shut down, then his liver and lungs, and eventually it was affecting all of his organs. His fingers, his toes, his ears, his nose, all turning black. Then his entire hands were black; then his entire feet; and the gangrene kept spreading up his limbs.

We watched our son fight to breathe, fight to live. After two more weeks, Evan was transferred to a third hospital, which had a burn unit. The damage to Evan’s organs from the meningococcemia was similar to the damage that burn victims suffer.

One day later, Evan’s arms were amputated above the elbows and his legs above the knees. We had to sign consent forms allowing the doctors to amputate as much as was necessary to save his life.

We had no choice; we would do anything to save Evan. Several days later, Evan suffered 10 hours of grand mal seizures. The seizures caused irreversible brain swelling. Evan was brain-dead.

This son of ours, loved more than we can put into words, had to be disconnected from the machines that were keeping him alive…had to be put into a body bag in front of our eyes.

After Evan died, we found out to our astonishment that a vaccine was available, a vaccine that would have saved Evan’s life. Not a new vaccine, but one used very successfully and safely by the military to control meningitis outbreaks for over 30 years.

The vaccine protected against four of the five strains of meningococcal meningitis. If we had known about this vaccine, Evan would have received it and Evan would be here today.

Please don’t let this happen to your child. Immunize and protect your loved ones. There is no getting over the loss of a child. It’s a wound with a scab that never completely heals.

Storytelling is human. It moves us to action as no other communication can, so please use it.

This article comes from PKIDs’ Communications Made Easy program.





Chagas Disease is Not HIV/AIDS

4 06 2012

I sat up in my chair when I read this headline last week:  Chagas Disease: “The New HIV/AIDS of the Americas.”

I remember the early days of HIV and AIDS. Anyone infected seemed guaranteed a horrible, painful death, and the typical reaction of too many friends and family members was to refuse to give a last embrace lest they, too, acquire the infection.

To say that Chagas disease is the new HIV/AIDS is quite a statement. Or at least, a startling headline.

Chagas disease comes from a parasite. The disease spreads when a big, bloodsucking insect known as a triatomine bug bites a person or animal infected with the parasite, then bites an uninfected person or animal.

The bugs come out at night and love to bite humans and critters on the face—hence the nickname (shudder) “kissing bug.”

The bugs bite, eat (remember the bloodsucking), and poop on the skin, and it’s the poop that harbors the parasite. The poop gets into the body through skin breaks or mucous membranes.

Infections can also occur through transplantation of infected organs or transfusion of infected blood, as well as ingesting infected bug poop piggybacking on uncooked foods. Also, it can be passed through vertical transmission, from mom to baby.

Chagas disease, according to the CDC and PubMed, appears in the acute phase as a mishmash of symptoms, making it hard to diagnose. And sometimes, there are no symptoms at all. If symptoms appear, they can include “. . . fever, fatigue, body aches, headache, rash, loss of appetite, diarrhea, and vomiting.”

An exam might show a slightly enlarged spleen, liver or glands. A telltale sign, called Romaña’s sign, is a swollen eyelid where the bug bite occurred or the poop got onto the eye.

After several weeks or even months, the acute symptoms (if any) go away. If an antiparasitic treatment is used during this acute phase, there’s a good chance that it’ll be the end of the infection. Treatment is also occasionally successful later on in the disease.

If there is no treatment, the infection becomes chronic, but might never again cause problems. Or, it could flare up after several years or even decades and cause serious complications for the heart or intestines.

Death is sometimes the outcome in either the acute or chronic phase of this infection.

There’s no way to prevent infection, other than going after the bloodsucking bugs.

But, is Chagas disease the new HIV/AIDS? No, say Rick Tarleton, president of the Chagas Disease Foundation, and Dr. William Schaffner, president of the National Foundation for Infectious Diseases.

Champions of public health wrote the editorial with the eye-opening headline, which certainly brought attention to their case, but in this instance they went too far and made a claim that is more likely to raise alarm than awareness.

By Trish Parnell

Image courtesy of  duke.edu