Please help me with facts for making an appeal to have the U.S. Medicare system (for older citizens) cover the costs of methylcobalamin for self-injections. I was blessed with a diagnosing physician who put me on 2 x week injections for life, but it was for transcobalamin. With methylcobalamin injections since last year, I have had more occasions of energy (walk for exercise most days!) and fewer periods of lying in the deep trough of fatigue. I also have less trouble with residual brain effects. Before, I was always deeply fatigued and sometimes struggled to communicate effectively. But I pay all costs to a compounding pharmacy.
There are two parts to such an appeal. First, frequency, which is once per month in the U.S., based on 1994 British Society of Haematology Guidelines. I hope to use information from PAS on this issue and welcome any specific recommendations from others . Second, approval as a safe and effective drug, meaning the Federal Drug Administration must cover it. Failure is highly probable for this part, but I can learn what might be a next step. For this part, I need information about transcobalamin vs. methl or hydrox. I understand that hydroxocobalamin is used in the UK because methycobalamin somehow is not available. But why is transcobalamin not used there when it is the only covered usage in the U.S.? Why is methycobalamin not manufactured in the UK?
It may be that I should contact people in the Pernicious Anemia Society, but I want first to hear from other patients. If you post a response, please say if you are in the UK or the US. I will appreciate what you say.