The beginning of the year is a challenging time for me and my husband. Living with the rare disease indolent systemic mastocytosis (ISM), plus having diabetes, anxiety, depression, PTSD and a host of other medical conditions comes with such high out-of-pocket expenses that we constantly worry about how we will be able to pay for them.
I have been in a clinical trial at a cancer research hospital for the last five years, and the medication I have been on has been provided to me through the trial. But the trial is ending, and now I am responsible for paying for my medication.
Care at a cost
Recently I got a call from the research center, and spoke with the nicest lady whose job is to help me with this transition. First, she told me that they were able to get my prescription approved through my insurance — which was great news. Then, of course, she had to tell me that the amount of money I would have to pay to meet the out-of-pocket expense was outrageous.
I let her know that I would not be able to pay that. After that huge scare, she offered to help me apply for a grant. I did not know grants existed for helping cover the out-of-pocket expenses for prescriptions. She told me to sit tight, and we would hear something soon. About two hours later she called me back and told me the grant was approved.
An incredible source of help
This ended up being such a huge blessing for me that I needed to share this information with all of you. I was approved for Blood Cancer United’s Co-Pay Assistance Program. The money can be used to cover not only the medicine I take for ISM, but my other medications as well. Also, it will cover out-of-pocket expenses for lab services, radiation, scans and tests.
I was able to get the grant under the myeloid leukemia umbrella. This is where ISM falls under. A card was mailed to me to give to my pharmacy. Now every time I pick up a prescription it covers any money needing to be paid at that time. If I need to be reimbursed for medical procedures they send me forms to fill out and attach a receipt to. Once it is approved, they will send me a check back for the amount I had to spend. I’ll have to reapply for the grant at the beginning of each year.
I did not even know grants like this existed.
I know there are many people that must choose between paying for food and lights or getting their medication, and that is so sad. I hope if anyone is going through this that they will read this and ask their doctor to help them. I am sure there are other organizations that provide the same service if you have a medical condition that qualifies.
I have been so happy with the research center, and I am sad that I will be going to another hospital closer to where I live now that the trial is over. They have taken such great care of me. Even with me leaving they are making sure that my transition to another doctor and getting my prescribed medication goes smoothly.
The rare disease community needs to stick together and help each other with answers, support and camaraderie. It is tough to live with a rare disease so we all need to make sure we do our best to support one another.
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