We have been unable to obtain Maribavir. Apparently you have to meet three criteria for the manufacturer to allow its use. 1. you must be in a clinical trial. 2. you must live in the continental U.S. 3. you must be an "adult". Melodina will be an"adult" in less than four months. She fails all three tests. Apparently this is the criteria set by the manufacturer. I have written to Vira Pharma Incorporated and asked for use on compassionate grounds. While the Health Minister has not responded to my e-mail - I have to assume he doesn't care - the Canadian and Ontario governments, nor the doctors at Sick Kids can get this medication.
There is another hope. Artesunate is an anti-malaria medication that has very few side effects and is being studied in Isreal for use against CMV in post bone marrow transplant patients. We will be discussing its use with Melodina's doctors today. I'll keep you posted.
The good news is that Melodina's CMV activity in her blood is markedly reduced. Her liver function indicators are unfortunately up and the available drugs cannot get rid of the virus - only try to control it. That's why we continue to look for a drug with less side effects. Until Melodina can achieve a fully functional immune system this may be an issue.
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