I Lost My Legs to Meningitis, But You Don’t Have To

17 Aug

Since March 2016, there has been an ongoing meningococcal disease outbreak in Southern California among men-who-have-sex-with-men or MSM. There have already been 24 cases and two deaths associated with this outbreak. NMA T.E.A.M. member Dell Miller, who survived meningococcal disease in 2015, shared his story with The Advocate to urge other gay and bisexual men to get vaccinated. Below is a sample of his op-ed – which can be read in full here.

Over the past six months, many gay and bisexual men throughout Southern California have heard about “meningococcal disease,” also known as meningitis, for what may be the first time in their lives. They’ve seen billboards urging them to get vaccinated or even heard about some or all of the22 cases that have occurred since March. Sadly, some of those 22 patients may have found out about this disease the same way I did: when they were diagnosed and fighting for their lives in a hospital bed.

I am an HIV-positive gay man and survivor of bacterial meningitis, so I know firsthand how important it is that other gay and bisexual men take every step to protect themselves and their loved ones from this devastating disease, which can be spread through close contact — coughing or kissing — or lengthy contact, especially among people living in the same household.

On January 25, 2015, I was enjoying a warm Southern California day at the beach with my partner, Sam, and our French bulldog, Charlotte. I remember calling my mom to (lightly) boast about how good it felt to be in shorts in the middle of winter while she was home in our native Washington State, keeping a fire going and a snow shovel handy. When we finished our call, I looked at my feet and wiggled my toes in the sand for what I didn’t know would be the last time.

As I sat up, I began to feel ill. At first, I thought it was the flu or maybe even something I had eaten earlier. My partner and I went home so I could get some rest. Even though I could feel myself getting weaker and weaker, it wasn’t until I noticed a dime-size purplish spot on my leg that I began to think this wasn’t ordinary flu.

Sam rushed me to the hospital, and in the waiting room, I watched as more and more purple rash spots appeared on my skin right before my eyes. I showed the receptionist my new breakouts, and I was taken to see the doctors. They immediately hooked me up to multiple IVs and told me I’d have to stay in the hospital for a while. Soon afterward, I was diagnosed with meningococcal disease.

To read more visit: http://www.advocate.com/commentary/2016/8/12/i-lost-my-legs-meningitis-you-dont-have

Give Kids A Shot!

8 Jun

Highlights from our annual gala to help #PreventMeningitis

On May 9, 2016 we gathered NMA families, supporters and immunization advocates in New York City for NMA’s eight annual “Give Kids A Shot!” gala to honor the memories of those we’ve lost to meningococcal disease, as well as the families and survivors who have been affected by this potentially preventable disease.

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MC for the night Dr. Paul Offit offering opening remarks (Photo by Kari Otero Photography)

At the same time, we celebrated the advances we have made in increasing awareness about meningococcal disease and its prevention. These strides would not have been possible without the work of many, including our extraordinary honorees:

Health Achievement Award: Paul Lee, MD

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T.E.A.M. members Carol and Heather Tufano with Dr. Paul Lee (Photo by Kari Otero Photography)

Dr. Lee has made tremendous contributions to help NMA advance its mission. As a practicing physician, currently at Winthrop-University Hospital, he has seen first-hand the devastating impact of meningococcal disease on young people and their families.

At the Gala he discussed how he came to understand the devastating impact of meningococcal disease and the importance of vaccination.

T.E.A.M. Outstanding Service Award: Carl Buher and Mike LaForgia

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T.E.A.M. members and Outstanding Service Award winners Carl Buher and Mike LaForgia (Photo by Kari Otero Photography)

This year, NMA recognized two T.E.A.M. members with the outstanding service award, each with their own unique story and contributions towards NMA’s mission.

Carl Buher contracted serogroup B meningococcal disease as a 14-year-old freshmen in high school. While it was four years before he could walk again, nothing could stop Carl from making the best of the situation. Carl recently testified in support of broad national recommendations for the serogroup B vaccine and participated in a number of media interviews to educate the public. At the Gala he reflected on the platform that NMA has given him to make a difference. “[NMA] gave me a platform on which to stand and speak out for vaccination and prevention, and has enabled me to make that platform as broad as I can imagine.”

Mike LaForgia was diagnosed with meningococcal disease in 2005 and lost his left foot and right leg below his knee. He never thought he’d run again. But, Mike ran the New York City marathon twice as a double amputee. These races have served as an opportunity to educate others about meningococcal disease and raise funds to support NMA’s mission. During the Gala, Mike described these races: “While I run, I carry those lost to the disease with me and as I pass others, I want them to know this disease is real.” For more than a decade, Mike has shared his story regularly as an inspirational speaker to both encourage those who have faced obstacles like his, and to raise awareness of meningitis and its prevention. As a father, he made sure all his three children were vaccinated and encourages others to make sure their children are fully vaccinated.

 Nancy Ford Springer Inspiration Award: Deion Branch

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Deion Branch and NMA President Lynn Bozof. The Deion Branch Foundation supports organizations committed to raising awareness about meningitis, including NMA.

Deion Branch is former New England Patriots wide receiver, a two-time Super Bowl champion and a Super Bowl MVP. At 21 years old, Mr. Branch became a father to twin boys, Deiondre and Deiontey. When Deiondre was one month old, he contracted viral meningitis. The doctors gave him only six months to live, but he survived.  In 2004, Deion founded the Deion Branch Foundation to raise awareness about meningitis. Each year, the Foundation coordinates a fundraising team to participate in the Kentucky Derby Festival Marathon to support organizations including NMA. At the Gala, he expressed gratitude for the mission of NMA and committed to continue the fight to raise awareness.

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Award winners Carl Buher, Mike LaForgia. Deion Branch, and Dr. Paul Lee with NMA President Lynn Bozof (Photo by Kari Otero Photography)

Thank you to everyone who helped make this night possible and those who have supported and continue to support our work!

 

Make the right thing to do, the easy thing to do

26 Feb

The following is adapted from NMA President Lynn Bozof’s testimony at the February 2016 ACIP meeting.

I didn’t originally plan to speak at this week’s meeting of the CDC’s Advisory Council on Immunization Practices (ACIP). There were no votes scheduled about meningococcal vaccines, and by now most members know my story of losing my son, Evan, to meningococcal disease when he was a junior in college.  Lynn Bozof Headshot

However, I have received so many e-mails and phone calls about the difficulty of getting serogroup B vaccines that I felt I had to say something. Especially with the recent serogroup B outbreak at Santa Clara University and case at Yale University.

When the ACIP voted to permissively recommend serogroup B meningococcal vaccination for teens and young adults last year, it seemed like a great start. We thought people who wanted to fully protect their children against all meningococcal strains would simply have to tell their healthcare provider that it was important to them to get the vaccine.

In reality, that’s not the case. I hear from parents on a daily basis that their children’s doctors are unaware of the two different types of vaccines, and even fewer stock the B vaccine, nor do they know where to tell people to get it.

Last week, a parent whose son contracted serogroup B meningitis told me she and her husband had to make a dozen calls to find a healthcare professional to vaccinate their other son against B. One of NMA’s survivors who contracted the disease while in college went to five different places before she was able to get the B vaccine. They were determined. But, at that point, most people would have given up.

Parents want to send their kids off to college fully vaccinated. Making this happen should be an easy, no-brainer.  It’s not. When we have someone who wants to be vaccinated, yet can’t find the vaccine, that’s a bad situation. When you have a doctor or nurse who doesn’t know how to deal with a vaccine request, that’s a bad situation. We need to change this.

NMA urges healthcare providers to either stock serogroup B meningococcal vaccine or to learn where to refer patients who want it. We encourage parents who want to fully vaccinate their children not to give up when trying to locate the vaccines. And finally, we hope the ACIP will review the current recommendations for serogroup B, so that the right thing to do – protecting our children—will be the easy thing to do.

 

Protect Your Family from the Flu

10 Dec

This National Influenza Vaccination Week (December 6-12), we want to remind all parents to make sure their family members – everyone 6 months and up – get their flu vaccine.

As an organization comprised of meningitis survivors and families who have lost loved ones to a vaccine-preventable disease, we know how important prevention is.

Although most people who get the flu will recover in less than two weeks, some may develop life-threatening complications. Each year, 5 to 20 percent of people in the U.S. get the flu. More than 200,000 people are hospitalized and 3,000 to 49,000 deaths occur. Last year alone, there were 147 pediatric deaths associated with the flu.

Families Fighting Flu is an advocacy organization dedicated to raising awareness about the seriousness of flu and the importance of vaccination. The organization includes families whose children have suffered serious medical complications or died from influenza.

This NIVW, we want to share the perspectives of these families with you:

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With these stories in mind, NMA urges everyone 6 months and up to get a flu vaccine – protect yourself and your family.

Q&A: Meningitis Vaccines for A, C, W, Y & B

17 Nov

We wrote about the new serogroup B vaccine recommendation when CDC’s Advisory Committee on Immunization Practices (ACIP) voted on it in June.

On October 23, 2015, the Centers for Disease Control and Prevention approved and published the recommendation for permissive use of serogroup B meningococcal vaccine for adolescents at age 16-23, with a preferred age of 16-18. This made the recommendation official.

The meningococcal vaccine for A, C, W and Y is recommended at age 11-12 with a booster at 16 and is part of the routine vaccination schedule. The B vaccine is recommended permissively, meaning that parents have a larger responsibility to seek and request the vaccine. That’s why it’s so important for parents to speak with their child’s healthcare provider to make sure their child is fully vaccinated against the disease.

To make the vaccination process clearer and easier for everyone who wants to be fully protected, especially given this new recommendation, we have answered some common questions about meningococcal vaccination below.

Q: Can my teen receive the serogroup B vaccine during the same visit as the A, C, W and Y vaccine?

A: Yes, your teen can be vaccinated against serogroup B during the same visit as the quadrivalent vaccine, preferably in different arms. Fortunately teens can receive the quadrivalent vaccine and start the serogroup B series of shots at one visit at the age of 16. The serogroup B vaccines require either two or three doses.

Q: What can I do if my doctor doesn’t stock the serogroup B vaccine?

A: Because the serogroup B vaccine is still very new, some doctors may not have it in their offices yet. You can ask your doctor to order the vaccine. Otherwise, college health centers, pharmacies and/or travel clinics may have it in stock. Another way to locate vaccine providers who carry serogroup B vaccines is by using the HealthMap Vaccine Finder: http://vaccine.healthmap.org/

Q: Why isn’t the serogroup B vaccine recommended the same way the quadrivalent vaccine is?

A: Serogroup B meningococcal disease is very rare, and because the vaccines are new, we don’t know exactly how long their protection will last or if they will protect against every case of serogroup B disease. That being said, it is possible that the CDC will reconsider a routine recommendation in the future. NMA will continue to advocate for broader recommendation for the serogroup B vaccine.

Q: Does insurance cover the serogroup B vaccine?

A: Health plans will be required to cover serogroup B meningococcal disease vaccines beginning October 23, 2016, but many insurers will begin covering the vaccines before that date.

Note: The Vaccines for Children program (VFC) will provide vaccines at no cost to children who might not be vaccinated due to an inability to pay. VFC will cover the cost of the serogroup B vaccine for children ages 16 through 18 years old, or who are 10 through 18 years old and are identified at being at increased risk of developing meningitis B.

 

70 Percent of Teens Need the Meningitis Booster

13 Nov

This week, several public health and medical organizations published a call-to-action urging doctors to recommend and administer the meningococcal A, C, W and Y booster dose recommended at age 16.

The booster dose is recommended for all teens at age 16 because the protection they received from the first dose begins to wear off over time. It’s critical that kids receive the booster to protect them during the ages when they are at highest risk of meningococcal disease.

Currently, less than 30 percent of first-dose recipients have received the booster. This means that about 70 percent of teens remain unprotected. We must improve this rate, and we know a doctor’s recommendation is a key factor in making sure our children are fully protected.

NMA applauds the efforts of these organizations and reminds all healthcare professionals and parents that when teens receive the A, C, W and Y booster dose, they should also talk to their doctor about getting the serogroup B vaccine!

Below is an excerpt followed by a link to the full call-to-action letter.

Dear Colleague:

The American Academy of Family Physicians (AAFP), American Academy of Pediatrics (AAP), American College Health Association (ACHA), Society for Adolescent Health and Medicine (SAHM), Centers for Disease Control and Prevention (CDC), and Immunization Action Coalition (IAC) urge you and your fellow healthcare professionals to strongly recommend and administer the second (booster) dose of meningococcal ACWY vaccine (MenACWY or “MCV4”) at age 16.

MCV4 was developed to prevent meningococcal disease resulting from infection with serogroups A, C, W, or Y. Meningococcal disease is devastating and debilitating, with a staggering 10–15% case fatality rate.

In May 2005, CDC’s Advisory Committee on ImmunizationPractices (ACIP) published its recommendation to vaccinate all 11–12 year olds with MCV4. In 2006, only 11.7% of adolescents 13–17 years of age had received a dose of MCV4; by 2013, 1-dose coverage in children 13 years of age had grown to an impressive 78.0%.

In January 2011, ACIP recommended that a second (booster) dose of MCV4 be given at age 16 in order to enhance protection in the period of greatest vulnerability to meningococcal disease – 16 to 21 years of age.

Unfortunately, more than four years after this recommendation was published, the 2-dose coverage rate for MCV4 in 17-year-olds is only 28.5%.By vaccinating fewer than 1 in 3 eligible teens, we are leaving millions of young adults without the protection they need.

A provider’s endorsement of vaccination has long been recognized as a key factor in improving immunization rates.

You are therefore in a perfect position to improve coverage by offering a strong, unequivocal recommendation for vaccination with a second dose of MCV4. We urge you to take advantage of opportunities to vaccinate during all patient encounters, including well visits, camp and sports physicals, visits for acute or chronic illness, and visits for other recommended immunizations. Additional ideas for improving your rates are available at www.Give2MCV4.org.

Read more here: http://www.immunize.org/letter/letter_promoting_meningococcal_vaccination.pdf

#VaccinesSaveBro Photo Contest Winner on Why She Vaccinates Her Son

5 Nov

Throughout August and September, clothing designer Wire and Honey donated a percentage of proceeds from “Vaccines Save, Bro” T-Shirt sales to the National Meningitis Association! 

During this time, NMA held a photo contest – anyone who shared a photo of themselves or a loved one in a T-shirt by posting it to NMA’s Facebook page was entered. We announced the winner, Chrystal Light, a pediatric nurse who entered a photo of her adorable son Dylan, age two, at the end of September. We chatted with Chrystal about what inspires her to support vaccination. 

Crystal

Q. What inspired you to enter the contest? How did you find out about it?
A. I found out about the contest through Wire and Honey’s Instagram account. The message is definitely something I stand behind, so I took a really cute pic of my son and it worked out!

Q. What experiences have you had as a pediatric nurse that have encouraged you to support vaccination?

A. I have taken care of patients who are immunocompromised and aren’t always able to receive vaccines on schedule. I believe in the importance of what we call “herd immunity,” where everyone gets vaccinated to help protect others who can’t be. This protects them from the diseases that they can’t get vaccines for – from chicken pox to measles mumps and rubella.

Q. What would you say to people who are hesitant about vaccinating their kids?

A. Usually in a nice way, especially on social media, I try to point them to the latest research. We see families in the hospital who don’t vaccinate their children, and we usually refer them to a doctor, who will explain why it is so important that they stick to the vaccine schedule.

Q. How would you suggest parents stay on top of their kids’ vaccination schedules?

  • Make sure they see their pediatricians when they’re supposed to, which is usually timed to coincide with their vaccinations.
  • Make sure they stay on top of CDC’s schedules of recommended vaccinations.
  • Keep up-to-date immunization cards for their children.

Congratulations, Chrystal! Thank you for helping us to raise awareness about life-saving vaccines!