My daughter, Kira, and I have a genetic disorder (Ehlers-Danlos Syndrome), which causes a number of disabling symptoms. Since she was 16, Kira has suffered from severe iron-deficiency anemia, because her body is unable to process iron normally (including through normal IV iron infusions.)
There is a simple, effective treatment -- an IV infusion drug called FeraHeme. It has helped her massively in the past.
Unfortunately, we have been unable to get it covered through her Medicare drug plan or through Medicare itself (it's falling into a coverage loophole), and each infusion costs $3,648 out of pocket. She needs infusions every 6 months until her ferritin and serum iron levels are closer to normal.
She has been seriously ill for over two months now, while her hematologist has been fighting to get her infusions covered.
Medicare and WellCare (pharmacy benefits provider) both agree that it's medically-necessary, but we are tied up in red tape and appeals, and she's getting sicker every day.
She had a bone-marrow biopsy on August 3, and her doctor is very concerned about the harm that this extended period of anemia is causing.
I'm pursuing every possible appeal and avenue of attack to get this covered, but it's taking way too long. At this point, we need to ask for help, so that she can get her first set of infusions, and therefore can start recovering while we pursue getting future treatments covered.
Thank you so much for any help you can give, and for boosting the signal on this campaign.
We are deeply grateful to have such an amazing community of friends, and I'm hoping that we can raise the funds to get Kira back on the path to feeling better.
- Denise Robello
- Heather Harper
- Lori Magill