My letter is below. Please read it and if you feel the same way, take the time to write them a letter. They should be addressed to Linda Roesch, 18 Barone Circle, Cheektowaga, NY 14225 (she is a member of United Mitochondrial Disease Foundation gathering materials to send to Univera). The denial in coverage is set to begin May 1.
To Ms. Roesch and Univera Insurance Company:
The United Mitochondrial Disease Foundation (UMDF) informed me that you would no longer be covering the Mito Cocktail for patients with Mitochondrial Disease. I have Mitochondrial Disease, specifically a variant of Pearsons Syndrome. Though I am covered by Blue Cross/Blue Shield, Univera’s decision to no longer cover this medication sets precedence for other insurance companies to deny coverage. It puts this drug that has helped me so much to perform everyday tasks in jeopardy.
Though it may initially save Univera money to not cover this medication, patients like myself will not be able to afford it on their own. Their conditions will deteriorate and they will need more costly medications and hospitalizations to maintain a certain degree of livelihood. For many, depending on their type of Mitochondrial Disease, patients will not just experience fatigue, but their organ systems can fail. Mitochondrial Disease is a degenerative illness, so this medication allows people the ability to prolong that deterioration, lessening their symptoms and lengthening their lives.
When I have not been afforded the ability to take this medication, due to lapse in insurance, I have fallen into sickness that has worsened into a condition needing hospitalization. The fever, pain, nausea, and other extreme symptoms prevented me from working and living a healthy, normal life. Without this medication I may not be able to walk, or work a regular job. I will have extreme fatigue and may have to rely on the government for assistance. I will have to take pain medication around the clock. In pinching pennies, insurance companies will be responsible for more costly charges. Ultimately, not covering the Mitochondrial Cocktail will result in more frequent hospitalizations, and sicker patients requiring more costly medications and procedures to be covered by insurance companies.
Mitochondrial disease is not something that many people know about. I struggle with explaining my symptoms to people every day. It is invisible. However, it is a disease that takes people’s lives and by denying them the only medication that is believed by medical professionals to help them, health insurance companies are saving dollars at the cost of human lives.
Please reconsider your decision to stop coverage of the Mitochondrial Cocktail.