By Shane Reeves, Chief Executive Officer
Neuromyelitis optical spectrum disorder (NMOSD) is a chronic disease that typically affects between 1 and 10 per 100,000 Americans. NMOSD is usually characterized by an inflammation of the optic nerve and spinal cord, creating a host of symptoms, including damage to the motor, sensory, and autonomic functions[1], causing incontinence and difficulty walking. This autoimmune disorder causes the individual’s own body to attack the central nervous system impacting proteins like aquaporin-4 resulting in some patients testing positive for aquaporin-4 antibodies.
Soliris, an infusion medication approved by the FDA in 2019 to treat NMOSD, has been a valuable treatment for patients suffering from the debilitating effects of NMOSD. The medication has been proven successful in improving the quality of life and disease management for patients with the condition. TwelveStone offers patients a warm, caring environment to receive infusions like Soliris. Recently, we met with a patient who had recently been diagnosed with NMOSD. Prior to beginning treatment, he experienced a significant decline in his ability to walk and use his hands, as well as cognitive issues. At the time of his referral, the patient was out of work, nearly destitute, and without insurance coverage.
TwelveStone approved this patient for drug administration at no cost. As a result, we have been thrilled to witness significant improvements in his quality of life now that he has begun these treatments. After infusion, he has recovered nearly 90% of his baseline (before experiencing symptoms of NMOSD). When TwelveStone’s pharmacists spoke with the patient’s prescriber, we were notified that he has finally been approved by the National Organization of Rare Diseases (NORD), which offers coverage for the cost of infusion services, further reducing the stress he had been experiencing. We are overjoyed with his remarkable progress which has returned his independence without the burden of significant medication expenses. He is now able to focus on getting back to enjoying his life!
[1] https://rarediseases.org/rare-diseases/neuromyelitis-optica/
