The Emily Stillman Foundation will be testifying at the CDC for the universal use of the Serogroup B of Meningococcal Disease vaccine in the entire young adult population.
West Bloomfield, MI -- (ReleaseWire) -- 06/16/2015 --Alicia Stillman, Co-Founder and Director of The Emily Stillman Foundation will be testifying at the CDC's ACIP (Advisory Committee on Immunization Practices) meeting in Atlanta on June 24th. Stillman has been a very outspoken advocate for the Meningococcal vaccinations since her 19 year old daughter Emily died in 2013 of Serogroup B of Meningococcal Disease while away at college. At the time, her daughter was vaccinated with the quadrivalent conjugate vaccine, which protected her from strains A, C, Y and W135. Stillman says she had no idea that a strain existed that her daughter was not protected from. She believes that she is not alone. The Meningococcal B vaccines were not yet available in the United States. Stillman claims she considers herself "no different than the mothers living in a third world country who bury their children every 20 seconds to a vaccine preventable disease even though she lives in the United States." Her anger fueled her activism as she and her husband, Attorney Michael Stillman took their fight to Congress and to the FDA. In addition, Stillman's Foundation began to bus groups of students and their families across the Detroit/Windsor border into Canada, where the Meningococcal B vaccine had already been approved. Stillman explains the vaccine bus project began in order to protect her son Zachary, who would be beginning his freshman year at the University of Michigan that fall. She said, "There was no way in a million years I would move another child of mine into a dorm room environment without that protection".
Stillman was relieved when each of the two Menigococcal B vaccines (Trumenba by Pfizer and Bexsero by Novartis) were officially licensed and approved through an accelerated approval process by the FDA for ages 10-25 at the end of 2014 and the beginning of 2015. "It was bittersweet," she states. "It was not in time for my Emily – but I knew that these vaccines would save lives." At the time she felt optimistic. The vaccines were now licensed and approved in the United States. She knew she still had to raise awareness – but she believed parents now had the ability to fully protect their children from all strains of this disease.
She soon realized that once a vaccine receives this stamp of approval, it must go to the CDC for an official recommendation. The ACIP board (Advisory Committee on Immunization Practices), which meets three times a year, is charged with making the determination and the recommendation as to how a vaccine should be used. This recommendation will ultimately will determine if a medical practice will use it, and if insurance companies will cover it.
The board met in February, and granted a limited recommendation. They recommended its use for patients who have an immune deficiency or in the case of an outbreak. Stillman explains, "To me, that just sounded ridiculous. Emily was not immune deficient in any way – and to recommend the use of this vaccine once an outbreak occurs is like buckling your seat belt while you are already involved in an automobile accident. We have the vaccine - It makes more sense to use it before an outbreak occurs." Furthermore, Stillman says there are physicians who are still unaware that the vaccine is even licensed in the United States. Even of the ones who are aware, most won't use it until the recommendation has been expanded. She explains that she is contacted by parents all over the Country asking for help. Locally, The Foundation sponsors clinics to provide this vaccine.
It is Stillman's hope that the June vote will result in a recommendation for the universal use of the meningococcal B vaccine in the entire young adult population.
As she shares her story of losing her 19 year old daughter Emily to Meningococcal Disease, she will convey that although she understands their responsibility to make a fiscally balanced decision, when there is a public health crisis (which Stillman believes this is), it is their responsibility to step outside of the box. In her mind, the universal use of this vaccine to protect our young adult population is not negotiable. Stillman has worked with the Universities in the State of Michigan. "The support was overwhelming and across the board," she says. "They want this vaccine at least recommended (if not required) before the kids return to school in the Fall of 2015. Although the letters are all addressed and sent in advance to the board, Stillman is proud to carry a copy of every letter in a purple folder (Emily's favorite color). She has the support of The University of Michigan, Michigan State University, Wayne State University, Kalamazoo College, Central University, Eastern Michigan University, Western Michigan University, and MICU (The Michigan Independent Colleges and Universities). She explains, "It was important when I testify that I do so with credibility as the director of a well-respected Foundation advocating for vaccinations, in addition to being a mother who has lost a child."
When asked what other important messages she wants to make sure people know, Alicia Stillman looks down. With tears in her eyes and she says, "I want people to learn from our tragedy. I want them to realize that this can happen to anyone. My daughter died of a vaccine preventable disease because the vaccine was not available to us. It is available now – we just have to give them permission to use it. I could not protect my daughter, but you can protect yours."
We thank Alicia Stillman and wish her the best of luck as she testifies in front of the ACIP board on June 24th, and as she continues her mission to protecting our children. We know her Emily is proud as can be of her mom.
For more information: http://www.foreveremily.org