We are Brian & Jenna Davis. Our daughter, Merritt, was born with Spina Bifida. She’s now almost 4 year old and she loves to sing, play, go on walks and she is truly a normal, sassy, 2-year-old.
There is one thing about Merritt that’s made her average 2-year-old life, complicated.
Like thousands of other Americans living with Spina bifida and other conditions, Merritt relies on catheters to drain her bladder. We quickly learned as new parents how essential catheters would be to Merritt’s health, and also how much these catheters would be a part of our new normal, everyday life.
When our insurance company denied coverage for Merritt’s catheters, we were stunned. They had lumped Catheters in the same supply category as bandages and gauze. Merritt uses over one thousand catheters a year, so to pay out of pocket for these, we’re talking thousands and thousands of dollars in excess medical costs.
Could you imagine someone charging you every time you went to the bathroom? That’s what it’s like for people who have to pay for catheters out of pocket.
We did everything we could. We filed appeals, all of which were denied. We also filed a complaint with our state insurance bureau, which they told us they were powerless. We wrote letters to insurance companies executives, all of which were ignored or denied.
It wasn’t until we reached out to the Spina Bifida Association, that we finally were given hope. We realized the only way to influence change would be through Advocacy, and because the Spina Bifida Association listened to us, we’re now joining forces and taking on this cause.
Life can be challenging enough for people with disabilities and their families and it’s unfair that insurance companies are only adding to this burden by refusing to cover every day, crucial medical supplies.
In January of 2021, the Spina Bifida Association, in tandem with other national organizations, will be releasing a catheter survey. This survey will be sent to thousands of people and it will uncover the truth about catheters, coverage, and insurance companies. It’s our hope that this survey will establish the foundation for a future where catheters are covered. But we know this isn’t a reality without the support and advocacy of organizations like the Spina Bifida Association.
This month, for Spina Bifida Awareness Month, I’m asking you to give to Meritt’s future.
Give so that she isn’t charged for every time she needs to use the bathroom, and so that all of the families in our Spina Bifida community have one less insurance headache to deal with.
The Spina Bifida Association listened to us, they heard our frustrations and our needs, and I’m confident that their advocacy work can truly make a difference in our futures. We look forward to a better and brighter future for Merritt, and we hope you’ll help us, and the SBA, create it.
Brian, Jenna & Meritt Davis