Meet Deshon Williams, a Wonderful Patient from our Infusion Center in Canton Georgia
“Very helpful and a very pleasant group of nurses. I recently went through a very tough time at the young age of 27 and boom the nurses were right there to pick me up and get me back on my feet. I wish I had more stars to give because the staff is the best in the world. Y’all rock!!!” – Deshon Williams
Last year we shared information about neuromyelitis optical spectrum disorder (NMOSD), a chronic disease whose source is yet unknown, affecting between 1 and 10 per 100,000 Americans. Often misdiagnosed as multiple sclerosis, 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. On January 1, 2021, the Medicare Home Infusion Services benefit went into effect, covering the cost of drug infusion services for certain medications and conditions[2]. TwelveStone offers patients a warm, caring environment to receive infusions like Soliris.
We have been blessed to be a part of the patient journey of Deshon Williams who was referred to TwelveStone by Nurse Practioner Stacey Tatroe in Rome Georgia. Her diagnostic skills and deep empathy for Deshon are evident in a recent documentary that shares his story. 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, Deshon 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 to share his remarkable progress – which allows him to return to the workforce 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/
[2] https://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/Home-Infusion-Therapy/Overview
