Coram, a CVS specialty business, provides high-quality infusion and tube-feeding care to patients where they live, work and travel. So when 17-year-old Andrew had an opportunity to go on a six-week cycling, cross-country adventure this past summer, his parents knew the Coram nursing team could help.
Andrew has Gaucher disease and receives enzyme replacement home infusions every 2 to 3 weeks. His trip would leave from Massachusetts in June and not return until early August, so he would require infusions along the route. His parents and medical team mapped out the trip and planned for infusions in Oklahoma City and Santa Monica, CA.
Coram nurses worked with Andrew’s primary care team at Boston’s Children’s Hospital to secure connections in the other states who would be willing to help. He needed an in-state physician to write the nursing orders, and a Coram nurse to meet him at a hotel for the infusion. The Coram Oklahoma City and Los Angeles branches ensured Andrew received the specialized care he needed.
Gaucher disease is a rare genetic enzyme deficiency disorder that affects 10,000 to 20,000 Americans, and can largely be controlled with enzyme replacement. Patients experience anemia, low platelet counts, severely enlarged liver and spleen, and bone disease.
Coram’s Vast Nurse Network
“The benefit of working with Coram is that we have more than 38 years of experience providing infusion services to patients,” said Julie Scaramuzzi, Nurse Manager, Infusion. “We meet patients where they are, and Coram has 73 ambulatory infusion suites across the country. Our team helps patients prepare the paperwork to bring liquids through airport security, and secure a nurse and location for the treatment,” she said. Coram has more than 2,000 clinicians who provide care to nearly 200,000 patients annually for a range of complex conditions including immune deficiencies, neurological disorders, digestive diseases and serious infections.
Andrew’s mom, Heidi, connected with Coram to pick up the medication near her home, and with the paperwork in order, boarded planes to Oklahoma and California. She met Andrew and the nurses in the hotels, and Andrew successfully received his treatments on the road. He was able to stay with his biking group for the entire trip.
Julie said “Andrew proves that patients who home-infuse are no longer home-bound. Our team works with many patients who travel for business or even just to see family for the holidays. Our network of nurses is vast and we are able to meet patients where they are, when they need their treatment.”
The Accordant Team Approach for Gaucher Patients
In addition to care from Coram clinicians and nurses, Accordant offers support for members with rare conditions, such as Gaucher disease, through targeted interventions designed to meet each patient’s unique needs.
“The specialized care team is composed of registered nurses, pharmacists, social workers, and a medical director – all backed by a medical advisory board,” Ahmed F. Hassan, Vice President and General Manager, Accordant. “These skilled practitioners set mutually agreed-upon health goals with the patient, discuss symptom management, explain proper use of medications, and even deal with resource issues such as lack of transportation to doctors’ appointments or cost of care.”
The more than 30 physicians on Accordant’s medical advisory board are available to the Accordant team to discuss complex situations and offer insights into care approaches that the nurse may use in supporting the patient. And, all of the team’s care is grounded in the latest evidence-based medicine and clinical guidelines.
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