Imagine your happy life with a loving partner, some happy children, and perhaps a pet or two. You have comfortable careers with healthcare coverage. You are not rich - losing a paycheck would be a big problem - but you do not feel insecure.
Now one of your children gets sick. Their kidneys have failed! In addition to learning about new drugs and diets and dialysis, you find out that your insurance has restrictions on specialty care. If you want them to pay for the surgery, then your child has to move to a contracted center in another state. Sure, your state has a hospital that can do it just 2 hours from home, but this is not the "preferred provider" so only 80% of costs will be covered. That means more than $20,000 out-of-pocket.
So how bad would living at the out-of-state center be? Since we are talking about a child, there will have to be a guardian of some sort with them. You will need to relocate to a strange location for weeks to months, leaving behind your support system. Of course, you cannot continue to work during this time, nor can you contribute to the maintenance of your family in non-monetary ways. Who will feed the dog? To top it off, your insurer will reimburse you for living expenses while out-of-town, but you have to pay to move and start a second residence out of your own pocket. Where do you get that money?
Well, Medicare also covers patients with end-stage kidney failure. You have worked and paid into the system, so your child is eligible...if you start paying Medicare premiums. There goes $800 each month to make sure your kid gets covered some way.
It's enough to break a family apart. Or enough to inspire a mother start a charitable organization.
The Stay of Hope Foundation will provide a number of services for children and families facing these medical and financial pressures. Beginning in Oklahoma (charity starts at home, folks) the foundation will offer advocacy in dealing with insurers and financial support for living expenses, Medicare premiums, and other out-of-pocket expenses. The group just got its LLC papers; as soon as we raise the application fee ($850) we will start the long and winding road to 501(c)(3) status! Eventually, we hope to offer services throughout the USA.
This scenario has occurred on a few occasions during the decades I have practiced, so when I heard about Heather MacDonald's new work I volunteered for their board. Forcing families under the stress of chronic disease to split geographically or face financial disaster seems unkind at best (mean, wicked, and grinchy come to mind).
I am supporting this group with my time and treasure and pride. More information can be found on the website, as can a Paypal donation button and an address for old-fashioned checks. As I noted, we do not have that 501(c)(3) status yet, but we are working on it.
So spread the word. Give if you can. And help families deal with that spot between the rock and the hard place.