Do families ever have trouble getting the right medication or insurance coverage?
The medications that patients have to take for their transplant can be very expensive, and for that reason we work closely with the families and their insurance companies to make sure medications are approved and can be paid for. Our social workers, financial coordinators, and patient care coordinators all work together to help families navigate the insurance process. We also work with the patient’s pharmacy to ensure medications are always readily available. While teaching patients and families about these medications, I emphasize how important it is that they never go without them, and that they should contact their transplant team if they ever have issues getting the medications they need.
Jennifer Gilarde, PharmD
We work on that very hard before they go home from the hospital: we set up with their home healthcare companies for supplies and we get their medications all in order. I think the biggest problem with that comes up as the children get older. As they come off their insurance policies, as families move and change, there are some issues that do come up with loss of insurance, loss of coverage, very high copays, etc., so there are some concerns.
We help them with that as much as we can. We try to be proactive about it as the kids get older, we try to teach them the importance of taking their medications and staying on top of their prescriptions. We have a financial administrator who works with the insurance companies and tries to help them with the documentation that they might need, but they have to learn to advocate for themselves and stay on top of it.
Maureen Jonas, MD, Medical Director, Liver Transplant Program
Courtney: They do, but a lot of times they don’t even know what’s going on behind the scenes, which is kind of nice. We may know that there are insurance issues or difficulty with approval, but the family may have no idea. It all gets worked out.
Rachel: They’re never, ever without their medications, and if we can’t get them at a pharmacy, then they always know that we can give them a supply here until we can get the situation resolved. We never, ever let them go without their medications or whatever they need.
Courtney: There’s a back-up plan for everything, pretty much.
Courtney Loper, RN, MSN, CPNP and Rachel Blumenthal, RN, BSN, CNN, Transplant Coordinators, Kidney Transplant Program
Do families ever have trouble getting the right medication or insurance coverage?
These kids usually need ostomy bags and then syringes and sometimes PN and then enteral feeds, so not everything comes from the same supplier: you have a home-care company that just deals with ostomy supplies and enterals, and then you have a home-care company that deals with the IV stuff. So it’s hard for the families. They get used to the system and how to get things done, but in the beginning, we’ll help them. We’ll spend however long we need to on the phone getting the right supplies and getting everything delivered, and I usually sneak them a lot of stuff before they leave, so they’ll be okay!
Courtney Fratto, RN, MSN, CPNP, Transplant Coordinator, Multivisceral and Liver Transplant Programs