Serogroup B Meningococcal disease (or Men B): is a serotype of meningitis that is common in the US and can, take families by surprise.
The viruses victims can start feeling a little under the weather, and rapidly lead to death, or even lose a limb within a day!
Take a look at this personal account from a mother who battled diligently to get her daughters a vaccine that could very well save their lives.
Think your kids have been immunized? The odds say probably not. The meningitis vaccine your school system requires is for other strains. Up until 2014 there were NO vaccines against this type meningitis.
Recent outbreaks of Men B at universities have dramatized the need for the Meningococcal Group B vaccine. Thank goodness there are currently two FDA approved vaccines. They may not protect against all Men B strains, but they both have been shown to be effective for some. It is “back to school” time, and this vaccine is indicated for kids between ages 10 to 25. I have three kids in that age range, and my pediatrician highly recommended they be vaccinated. My pediatrician however, has not been able to get it. I went looking for Bexsero, a two dose vaccine being sold by GlaxoSmithKline (GSK), because I wanted to try and get a complete course in before my older children traveled away. Trumenba, the other FDA approved vaccine being sold by Pfizer, is a 3 dose course. But GSK does not seem ready to sell the vaccine.
The health department does not have it. I called the State Dept. of Vaccinations who told me to call the health dept. The health dept said I had to call the state. I did. They told me to call the health dept., so I called the health dept again and gave them the name of the guy at the state health dept… I waited.
I called my health insurer and asked them to help me find it (it shall remain nameless, but its pretty huge). It has been two weeks, and I have now received a snail mail letter saying they are working on my inquiry. I called GSK and asked where in a 50 mile radius they had distributed their vaccine. I was told they could not tell me – it was a breach of confidentiality. Which left me thinking, (really?! why would those trying to sell the vaccine object to you pointing potential customers in their direction?).
Finally, I called a travel clinic who ordered one vaccine for which I paid out of pocket $195 plus an $11 administrative fee. I ordered one day, and it arrived the next and in my child’s arm within 3 hours. That was great service GSK!!
Of course we will need a second dose at least a month apart, and because it took 3 weeks to get the first dose, she will already be gone in college, when the next dose is due. I called the college health service. No they do not have it and no, they will not order it. I guess the second dose will have to wait for Fall break…
Now the hunt began for Bexsero to treat daughter number two who lives in the Washington DC area. I started by calling a travel clinic, to try to shave 3 weeks off my search. This facility and physician said they would order and administer it, but when they called GSK they were told they would not sell one immunization only a package of 10.
The MD’s office, who had never heard of it, was reluctant to buy $1500 dollars worth of a vaccine that might lack demand. I then called GSK and asked why they would not sell one vaccine in D.C. when they would sell one in my town. They don’t know. They will get back to me. It was over one week and three days since I sent an email on July 30th to their vaccine email address. Still no response.
In the meantime, my child who needs a vaccine traveled to Tulsa for work. She said she was willing to get the vaccine there. I called the health dept. in Tulsa. No vaccine.
I called the immunization program and was told they do not have the vaccine. I asked if they could order it, but the nurse would have to call me back. She did but explained that no, they did not have it and besides that my child did not need it. Her exact response was, “only kids with cancer or other immune system compromising conditions needed Men B.” I explained why I thought my kid was at high risk. She works, travels, sleeps and plays with 15-17 year olds from around the world for her job. No says the nurse. That is irrelevant.
New Idea – try to find a GSK sales rep in Tulsa. Two calls later, I give GSK the Tulsa zip code. No sales reps in Tulsa. None at all.
I then called a private physician in Tulsa and the nurse there said to try Walmart. Walmart’s pharmacy in Tulsa has been uber cooperative, but their “middle man” only has 3 doses and they cannot guarantee that they will be ordering more, or that the product they have will last.
Despite the long arduous road. There have been 3 bright spots I’m thankful to point out:
1. I got a call from my local health dept, their message made me smile “Because of your call we have now talked to the state and can order it. Thank you for putting this vaccine on our radar.”
2. A wonderful friend asked me if I knew where she could get her kid vaccinated and he now has been immunized at the local travel clinic, before heading out to state university. And two more of my neighbors have also secured it.
3. My insurance carrier called to tell me the vaccine and its administration will be fully covered as a preventative medicine at participating providers. They will consider my request for reimbursement, even though it was not given at a participating provider because they had been trying to help me find the vaccine at a participating provider to no avail.
For my commission, GSK may I please have 3 more doses of Bexsero ? I know you are not the only Men B vaccine on the market, but young adults are hard to corral for shots and I liked your two dose regime.
Still, if even a very motivated Mom can’t get it, I may have to start tracking down Trumenba instead.
If you have had a similar experience trying to vaccinate your kids, leave a comment below.
And be sure to share this crazy story to prove a mother’s love for her kids is nothing to mess with!
