A Survivors Perspective

This testimony was provided to the Advisory Committee on Immunization Practices on February 26, 2015.

My name is Carl Buher. I survived serogroup B meningitis when I was 14 and am writing to you as a representative of the National Meningitis Association.

I spent five months in the hospital, lost three of my fingers and both my legs below the knee. I had 11 surgeries, and it took me four years before I could walk again using prosthetics. To date, my medical bills have far exceeded two million dollars.

I still consider myself lucky. Eleven years later, I have a college degree, a great job and a beautiful wife. Most survivors I know feel the same way. We have pretty good attitudes and remain positive.

No matter how lucky we are, most of us will deal with the effects of this disease for the rest of our lives:

  • My fellow survivor, Samantha, has had more than 30 surgeries in 37 years and still deals with pain on a daily basis.
  • Kyla lost both legs and most of her fingers and has gone through a dozen surgeries in the past six years to separate and lengthen her thumb – because, as she says, opposition is everything.
  • Blake, who survived meningitis at age 18 learned so much as a dialysis patient before he got his transplant that he became a dialysis nurse.
  • Some of us, like Casey and Francesca, have invisible scars like loss of cognitive function, hearing or vision.

Many of us endured – and some continue to endure – anxiety, fear and depression because of this disease.

When we get together, we talk about the challenges that we deal with that most people don’t even think about. Things like how to take a shower when you are traveling, or how hard it is to count to 10 on your fingers when you are missing a few.

For most of us, it will affect our finances for the rest of our lives. Our cost of living will always be higher since we may need additional support. There are the more obvious things such as we may need more time off of work to deal with medical complications or additional surgeries. Even those of us with great insurance plans pay an enormous amount in co-pays and out-of-pocket expenses. But there other things that no insurance will cover, such as the cost to renovate homes so we can navigate in our wheel chairs or retrofitting cars to fit our needs.

We’re all very different, but there’s one thing we universally agree on. We don’t want anyone to have to go through what we went through – and what we still deal with every day.

When you look at the cost of prevention, I hope you’ll calculate how high the cost of survival is as well.

Carl Buher, meningococcal disease survivor and T.E.A.M. member with the National Meningitis Association