Forgetting or intentionally skipping doses repeatedly can be catastrophic. Medication is the only thing between a transplant recipient and rejection, and honestly, it’s an extremely imperfect solution with no guarantee. It’s not an exact science, it’s ever-changing, and it’s no cure-all. The ideal option would be an organ grown from the patient’s own stem cells, which does seem to be a viable option in the future. However, right now we have to play the hand we’re dealt. It is imperative that your child receives his or her medication in the proper dose at the correct time.
If you cannot afford the medication, there are ways to get assistance. First and foremost, talk to your transplant team and social workers, because they have a lot more sway with insurance companies than policyholders do. They can offer medical evidence that the medication is a requirement rather than a luxury. We needed a medication to protect N during RSV season, and the insurance company denied it several times. Each time, our transplant nurse called our insurance company and fought for us to get this medication, and she’s had to fight to get it for several other families. Eventually, though, we were able to get the medication covered because of her efforts. Your transplant team is an invaluable resource, so use them!
There are also programs available like Astrazenaca (under-insured and low income qualifications) or NeedyMeds, both of which have several programs through which you may qualify for financial assistance with medication costs. If you qualify, Medicaid also covers prescription costs and many more medical expenses (outpatient visits, clinic, etc). Some people feel ashamed or embarrassed to seek help, and I understand why they would feel that way. Truly, I do. But if you are one of those people, think of it this way: what’s worth more, your pride, or your child’s health? If your child suffers medical complications from a rejection, and you are the guardian responsible for ensuring that doesn’t happen, and it happened because you didn’t do everything possible to get them their medication, Child Protective Services could get involved. I’ve read horror stories on Facebook transplant pages about CPS getting involved with families whose children did not get their medication, or did not take their medication and their parents didn’t know about it. Furthermore, if this happens to you, your child may not qualify for another transplant if the medical team can’t guarantee this “won’t happen again.”
I’ve seen several Facebook posts of people asking “How many doses can I skip, since I can’t afford my refill until next month?” The responses were pretty bleak. One woman said, “I couldn’t afford my meds once, so I went several days in a row without my Prograf. I was diagnosed with rejection a week later. Since then, I’ve been in chronic rejection.” Another said, “I didn’t like asking for help, but I was NOT about to go back through the misery I suffered before I got my transplant.”
I’ve also seen people on Facebook asking others to share their meds so they don’t run out. This is illegal and highly ill-advised. Don’t let it come to this. Bottom line: get help, and get those meds. They’re crucial, and it’s worth asking for help.