Maintaining, Monitoring, and Measuring a Smooth Patient Journey

The journey of a rare disease patient is not an easy one from the start, frequently entailing a years-long quest for the right doctor, the correct diagnosis, the most effective treatment. Once received, a new turn is taken, with expert guidance needed to remove numerous obstacles in the path to affordability, accessibility, and understanding of the often costly, complex therapies prescribed. These can require unique administration, continual monitoring, education, and time-intensive processes for enrollment, documentation, benefits verification, prior authorization, and reimbursement.

At Orsini Specialty Pharmacy, we recognize that each patient travels down their own unique road, and our mission is to help them navigate this most transformative part of their journey every step of the way. As Dilyana Dineva, Orsini patient care coordinator, noted: “I feel lucky to have the chance to truly make a long-term impact on other people’s lives. My role has allowed me to provide not only medication to patients but a whole experience with Orsini. Each patient that we touch with our hard work and dedication is another patient that has a longer or better life, and each time we speak with them, we can hear it in their voices.”

We’re proud to report the results of that powerful commitment, as illustrated in our 2020-21 patient satisfaction surveys, taken during the pandemic, one of the most challenging periods in healthcare history. Beyond the numbers, we also share a sampling of the heartfelt comments we received from the patients surveyed as well as our employees’ stories from the front lines of care.

But we are also well aware of the challenge - and the promise - that lies ahead with the explosive growth of advanced gene therapies aimed at treating hereditary rare diseases. Our pledge: we’ll continue to ask questions and listen to the answers. There’s no better way to ensure we’ll always be providing the most responsive, knowledgeable, and empathic guidance possible as we move into the next era of patient care.

In 2020 and continuing through 2021, Orsini conducted patient surveys to measure six primary keys to satisfaction. Below you’ll find the ratings based on responses from a total of 5,293 patients receiving specialty pharmacy medications for conditions including hereditary angioedema (HAE), Fabry disease, idiopathic pulmonary fibrosis, Duchenne muscular dystrophy, type 1 Gaucher disease, Pompe disease, and other rare diseases.

1. 99% received courteous and helpful customer service.

“There are no words to express my gratitude to you for helping me and my brother in our time of great need. You truly went above and beyond by expediting the shipment of the medication, explaining the process, and even providing direction on the next steps.  Your calm demeanor, professionalism, and high competency ensured us that we were safe with you. Indeed, you are a godsend." – letter received by Hetal Pandya, Orsini patient care coordinator.

“Your staff members are the best. I couldn’t ask for anyone to be kinder. I really appreciate the monthly call to refill and ship my order. It takes away the stress of not remembering to call.” – Patient J.B.

“I truly appreciate the help and hope provided by your pharmacy. Thanks for helping me and others to cope.”- Patient L.M.P.

2. 98% said they knew their point of contact at Orsini for questions and concerns.

“I had some concerns after 6 pm. I was connected to a pharmacist in less than 2 minutes. She gave me valuable information right away.”- Patient M.A.M.

“I appreciate all you have done to make the process easy to understand. I was worried about cost, so grateful for all your assistance.” – Patient F.L.

3. 99% said their medications and supplies arrived cleanly and correctly.

“One of my most memorable experiences was when a pediatric patient, who required a special syringe size and style, needed an overnight delivery of medication. We had just run out of a specific type of syringe and could not replenish stock from our supplier at that time, so I spent several hours calling every medical supply store and retail distributor until I was able to find a site that had them in stock. I drove to the location, purchased them, and brought them back to our site for the last pickup of the day to make sure the patient received the medication.” – Buffy Nelson, Orsini specialty pharmacy program manager.

4. 98% said their medications and supplies were delivered in a timely way.

“Great pharmacy. Always receive my medication on time and very well packed.” – Patient C.R.  

“We do everything we can for patients to ensure they receive their medication for idiopathic pulmonary fibrosis. One time, as I was leaving work for the day, a patient’s daughter called and asked for help applying for a grant she was trying to secure to help pay her parent’s medication. I walked her through the entire online process, step by step. I do what it takes to help patients and caregivers because I love doing what I do.” – Linda Rech, Orsini patient care coordinator

5. 99% said they understood how to safely use the medication and supplies with the instructions given by Orsini.

“Thank you for your assistance with this medication. It would not have been possible to take it without your help.”- Patient J.R.

6. 98% said the services received met their expectations.

“Thank you for all your efforts coordinating my medication with the manufacturer, insurance company, and my doctor.” – Patient L.N.P.

“Staff has given me much consideration to make sure my meds arrive on time. It has changed my life.” – Patient A.K.

“There is no one that excels the service Chris delivers. Kind, compassionate, always there when I need him.” – Patient O.C.

Notably, 98.5% of patients surveyed would recommend Orsini to their friends and family.

Providing patients with comprehensive and compassionate care since 1987, Orsini is the leading independent specialty pharmacy focused on rare diseases, gene therapies, and complex conditions. Orsini's high-touch care model centers around experienced, therapy-specific teams that provide personalized care to patients. At Orsini Specialty Pharmacy, we’re constantly inspired by the stories of our patients. You can read some of our patient journeys to learn more about their stories, living with their rare disease, and how partnering with a supportive and empathetic specialty pharmacy can make all the difference in their treatment.

You can also connect with an Orsini Specialty Pharmacy rep to learn how we can help improve your patients' adherence and outcomes.