How ODS Improved Viropharma’s Patient Care

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In 2006 when Orphan Drug Solutions first went to Viropharma’s offices (prior to them being acquired by Shire), they had 80 employees dedicated to the advancement of their primary drug, Cinryze. Cinryze was and is the only FDA-approved C1 esterase inhibitor therapy used to treat HAE (Hereditary Angioedema), so its success was not just important for them as a company, but for their patients who were suffering from this disease.


HAE is a rare, genetic disorder caused by the deficiency of C1 esterase inhibitor, which is a protein in the blood that helps prevent swelling. Individuals that have the disorder experience intense, often times painful attacks of swelling in any part of the body, but typically in the extremities, abdomen, face, genital area, or throat – all of which are potentially life-threatening. HAE attacks can happen without warning and can last for days.


Before Viropharma began using our software, they managed their patient relationships and everyday data through Excel spreadsheets and emails. This “system” could work for a small organization with a low number of patients, but for any growing business, its lack of scalability and limited functions make it nearly impossible to expand passed a certain point. At that time they had only a few patients, but they knew they needed to make changes to their current “system” because, in the end, their care coordinators needed a better way of communicating with Cinryze users to ensure better service, a better patient experience, and more patient retention.


Once Viropharma was ready to take the next steps for growth, they gave us a call and we began working together right away. Their business needs were a moving target, thus the operations needed to match the behavior of the business to continue to enhance value and patient care – and that’s where we came in. Our unique ability to customize menu options, logic, interfaces, dashboards, you name it, was the primary reason we were able to cater to what they needed.


“The main thing that attracted myself and Viropharma to Orphan Drug Solutions’ was that they provided a very consistent method of ensuring patient retention, patient compliance, and most importantly, doctor and patient insight to behaviors that may need correction.”Thomas Lembck, former CIO of Viropharma


He continued, “Patient care improved significantly. Most of our case coordinators’ time shifted from the basics and administrative work into high, valued activities such as more time to discuss patient needs, participating in the strategy of planning new types of care, and the development of support programs based on hard evidence.”


Our software was able to evolve because of our constant engagement with Viropharma. On a monthly basis, each department associated with doctors (HCPs) and patients would provide feedback. This would include medical affairs, clinical operations, clinical development, marketing, sales, I.T., managed markets, corporate communications, and the executive team.


Ultimately, because Viropharma used our software, their organization not only expanded internally but they were able to onboard upwards of 1,200 Cinryze patients. Their day-to-day tasks were better organized which, in turn, made it so their care coordinators were able to extend a better relationship to all of their patients.

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