Ever since I was diagnosed with this disease I have had quite a few instances where I had to fight for my insurance to cover prescribed medicine. If they didn’t want to cover the drug they would sometimes offer to cover the generic brand or a “similar” drug. I have always been weary of this practice because I trust my doctors, mostly because they have been well vetted by me. They know my medical history with medication and we have discussed why they are prescribing that specific drug. I also know my personal reaction to medication. I am always the person who is the 2% of the population who suffers from side effects. I easily get nauseous, and sometimes even swallowing my pills the wrong way could make me vomit. I know that drugs easily affect me so I am always extra cautious about what I take. I usually check with my doctor and get a second opinion before I accept a similar drug.
A few days ago I read this article about a well-known disability advocate and lawyer, Carrie Ann Lucas who died recently. She had a rare form of muscular dystrophy. She used a ventilator for breathing assistance, got around in a power wheelchair and had low vision. According to the article, “In January 2018, she got a bad cold, which turned into a trach and lung infection. United Healthcare refused to pay for a specific medication she needed, her obit says. She took a “less effective” drug instead and had a bad response to it, losing function including her speech. … Her insurance company thought that the medication she needed to recover from a lung infection was too expensive and instead approved a drug that would lead to her loss of speech and her eventual death.” Rebecca Cokley, director for disability policy at the Center for American Progress and a friend of Lucas’, was quoted as saying “Carrie Ann Lucas died to save $2,000, even though it ended up costing the insurance company over $1 million to try and salvage their error.”
This whole situation is so sad and upsetting. I have seen other people with lupus and other illnesses discuss the run around and the difficulty in getting the treatment and medication they deserve, this should never be the case for anyone. It is ridiculous and amoral that we still have this issue with health insurance looking to save dollars instead of lives. I want this post to be the beginning of trying to solve this problem for patients around the country. We deserve the treatment that we are prescribed. We deserve our lives to be valued and supported regardless of how much money is in our bank account. I will be posting a follow up to this after a bit of research for financial help and medical advocacy for patients. In the meantime, I pray for all of us good days, great healthcare and an incredible support system.