Our teen daughter deserves a day without pain. Help her get needed Autoimmune treatment.
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A single mosquito bite changed my daughter Liana’s life. What began as a mild case of meningitis, encephalitis, and viral arthritis morphed into a collection of Autoimmune disorders that have plagued her since she was 9 years old. Unfortunately, her best chance at treatment (and a normal life) is the one our insurance company, UnitedHealthcare, refuses to cover.
Our once healthy, athletic daughter now experiences debilitating abdominal pain, insomnia, headaches, whole body pain/neuropathic pain, nausea, painful joints, and severe fatigue. She’s also 40 pounds heavier due to illness-driven metabolic issues. The physical and emotional impact of her autoimmune condition is significant. She has trouble sleeping due to the dysfunction of her autonomic nervous system, also known as Dysautonomia. Dysautonomia is often accompanied by Gastroparesis or a dysfunction of the nerves of the gastrointestinal tract, causing slow and painful digestion. Social impact is also difficult: friends don't come to visit and when they do, they don't know how to talk about her condition or understand its full impact.
UnitedHealthcare coverage policy requires conventional Autoimmune treatments to be used first before any other treatments are considered. The first line treatments for Autoimmune neuropathies like Liana’s are Cortisone and Lyrica. However, these are not ideal treatments for teenage girls and cortisone has significant long-term effects on the body, including weight gain. Intravenous immunoglobulin therapy, IVIG, or biologic drugs like Rituxan, on the other hand, are less destructive on the body's internal systems, however, these two treatments are very expensive ($15K-$30/Treatment and up to $100K/year. These alternatives though begin to work right away (IVIG) in improving the quality of life for many young women who have autoimmune conditions. Rituxan takes a bit longer for the body to respond to.
Our family began petitioning United Healthcare for IVIG treatment last summer. By early 2017, we had exhausted all of our appeals for the treatment, and Liana’s condition has become worse. We are now petitioning for the biologic drug Rituxan.
It has been 4 years since Liana has had even a single day in which she’s felt normal and healthy. She only leaves the house once per week -- for doctor's appointments. At the very least, she deserves to have hope for a future and life without a daily pain. Liana's middle name is Hope.
Please sign and share this petition asking UnitedHealthcare to allow IVIG or Rituxan treatment for Autoimmune disorders. Young people across the country, like our daughter, are suffering every single day -- and UnitedHealthcare has the power to reverse this condition, provided they act promptly to these autoimmune conditions. One to two years after diagnosis is much too long.
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