[TazziRN]

NO medical advice please, don't get this closed down! Not sure if this is the right forum, but I'll start here.

What resources do pts have when insurance doesn't cover all of a treatment and have to come up with the very large balance in full beforehand? It's a rare condition that needs surgical intervention. Where can I point the family? In California there is an organization that helps children with catastrophic illnesses but this person is in her 20's. Is there any kind of help for adults?

[SaderNurse05]

Is there a foundation for this condition? They may have benevolence funds.. Is there a specific hospital/surgeon that has to be used? Some hospitals I work with have waived large bills. Do you have any contacts there who are case managers or medical social workers? If you want to PM me with more specifics I may be able to come up with better options. Good luck and God bless you for trying to help!

[CritterLover]

Originally Posted by SaderNurse05

Is there a foundation for this condition? They may have benevolence funds.. Is there a specific hospital/surgeon that has to be used? Some hospitals I work with have waived large bills. Do you have any contacts there who are case managers or medical social workers? If you want to PM me with more specifics I may be able to come up with better options. Good luck and God bless you for trying to help!

This is exactly what I was thinking, too. Most disease/disorders, even rare ones, have some sort of foundation/association, and they would be the best resource as to where to get funding.

Also, is there a reason insurance isn't paying? No insurance, unable to get medicaid, "experimental" treatment --> no coverage for this surgery?

The only other thing I can think of is having fund-raisers. Bake sales, car washes, garage sales and the like. Maybe get a local high school to sponser? Or a sorority?

[Jolie]

I agree that talking with a social worker would be a good first step.

I've never worked in CA, but in the Chicago area, there are private philanthropy groups that will contribute large sums towards unpaid medical expenses for families without adequate insurance. Our NICU social worker was a wealth of information on finding funds for these families. It was not uncommon for families to have insurance coverage for their infants, but not maternity care, so we often sought assistance for the mother's bill.

Good luck and God bless you in your efforts.

[TazziRN]

Originally Posted by CritterLover

This is exactly what I was thinking, too. Most disease/disorders, even rare ones, have some sort of foundation/association, and they would be the best resource as to where to get funding.

Also, is there a reason insurance isn't paying? No insurance, unable to get medicaid, "experimental" treatment --> no coverage for this surgery?

The only other thing I can think of is having fund-raisers. Bake sales, car washes, garage sales and the like. Maybe get a local high school to sponser? Or a sorority?

Her insurance will pay for all but $15,000, and she has to come up with that up front. The dad works for a grocery chain and is well known in most of the store branches, and we have already raised about $1000 via donations, but it's a long way from the total.

[crissrn27]

could you tell us the name of the disease/disorder so I can do some research? No names or details or anything.

[TazziRN]

Chiari brain malformation. She does not have spina bifida but she has tremendous pain and her balance is so bad that she can't even stand in the shower.