Meningitis Angels Fear More Outbreaks with only Permissive Men B Recommendations

ATLANTA - June 25, 2015 - PRLog -- On Wednesday, June 24^th,  in Atlanta, Georgia the U.S. Centers for Disease Control and Prevention’s (CDC) Advisory Committee on Immunization Practices (ACIP) met to decide whether or not to recommend routine Meningococcal group B vaccines for adolescents and young adults. However, a Category B, or “permissive,” recommendation for those between the ages of 16 and 24 years was a disappointment for parents from across the country.

Meningococcal B disease progresses quickly and can cause serious debilitations or death in as little as 48 hours. It is a contagious disease that spreads in places where people live or gather in close quarters, share drinks, food, or cigarettes, and have close, intimate contact such as kissing. Experts claim smokers carry the bacteria “Neisseria meningitides” which causes the disease at a higher rate.

Several advocates from Meningitis Angels, an organization founded by Frankie Milley after she lost her only son Ryan to meningococcal meningitis in 1998, testified at the hearing.

Scott Pankhurst, who lost his 17-year-old son Jake just last year to Meningococcal B and now serves as an Oregon State Team Leader for Meningitis Angels, shared his thoughts on the proceedings, “Today was hard. I felt as if I lost Jake all over again. I had to take my older son, Jeff  to Canada to get him vaccinated.  Most parents can’t do this and should not have to. This disease has cost my family great personal grief, social and economical hardship.”

Milley stated earlier, “The disease is one of the quickest onsets of any and one of the most deadly and debilitating on earth. Yet we have to beg, cry and dedicate our lives in order to get FDA approved vaccines recommend to stop it.”  She also noted in her testimony, “Many times with the work of the CDC working group, the voting committees and old warriors like me and others we have made amazing strides in preventing meningococcal disease. We have celebrated victories. We have walked out in tears of defeat such as the decisions or lack thereof on infant meningococcal recommendations a few years ago.”

Emotions once again ran high today as survivors, parents, siblings and health care providers shared their devastating experiences with meningococcal disease.  Milley explained, “Permissive recommendations do not allow for proper education on the disease or the vaccines. It hurts accessibility and affordability for those who don’t have insurance or access to the federal Vaccines for Children program. It causes confusion among vaccine providers and sometimes hesitancy to vaccinate. There are problems with reimbursement for those same providers but most of all leaves some of the most at risk for the disease outside of the recommendation. It creates confusion for parents over which vaccines their kids truly need to protect them fully from this deadly disease. Sadly state policy decisions are not made on permissive recommendations either.”

For now, parents find themselves searching for the Meningococcal B vaccines or begging doctors to give it to their child. Georgia Angel Team Leader Rhonda Butler, who recently lost her daughter Brooke to the disease, tried to have her remaining daughter vaccinated. Because of the confusion around Meningococcal B, her daughter’s doctor instead gave her an additional dose of the meningococcal conjugate vaccine which covers groups A, C, Y, and W135.  Butler said, “Now I have to send her off to college before she is fully protected against meningococcal B with a possible threat of outbreak.”

Because of this disease, families are thrown into social and economic nightmares. Those families whose children survive are often left with children so debilitated, they require 24 hour care.   The divorce and family dissolution rates are high. Some even report suicides. They have to fight for education, health care, prosthetics, disability benefits and more. The cost can run into the millions for the families, insurance companies and the government health care and educational programs.

David Berman DO MS FAAP FPIDS with the Division of Pediatric Infectious Diseases at All Children's Hospital and Johns Hopkins Medicine serves as a medical advisor for Meningitis Angels.  He said, "As a pediatric infectious diseases specialist, I was very disappointed that the ACIP did not recommend that all teenagers receive the new meningococcal B vaccine. The decision to immunize will be left up to a discussion between parents and pediatricians. I strongly encourage pediatricians to consider offering this vaccine to teenagers especially those beginning college this August. Although the disease is rare, the consequences of infection are devastating for adolescents and families."

Milley stated, “We must remember that two different vaccinations are needed in order to fully protect against meningococcal meningitis. To only focus on one gives parents and students a false since of security. The vaccines for meningococcal groups A, C, Y and W135 are different from the vaccines that prevent group B. They are all deadly.  Teens and young adults are all at risk. To only vaccinate those living in dorms sends a message of less importance to other students and younger teens. How many tears must we cry and how many must die or be debilitated before they listen and finally help eradicate this disease in the US?”

For more information on Meningococcal B disease or Meningitis Angels, visit http://www.Meningitis-Angels.org <http://www.meningitis-angels.org/> . Website visitors can also view Meningitis Angels’ new music video, “Angel Wings,” starring country must artist Curtis Braly and several Angel children at http://www.youtube.com/watch?v=ELVflh0DTms <http://www.youtube.com/watch?v=ELVflh0DTms>.