Insights for Supporting Unique Patient Populations

NORD 2016 takeaways

Insights for Supporting Unique Patient Populations

Members from both UBC and Accredo recently attended NORD’s Rare Diseases and Orphan Products Breakthrough Summit in Arlington, VA. This was a great opportunity for leaders from both organizations to collaborate with key industry stakeholders to discuss the progress as well as challenges in rare disease diagnosis, clinical trials, patient engagement and access to orphan products. Here are some key takeaways our leaders had from the conference:

Integrating the Patient Perspective in Research and Care

To fully understand the impact of rare diseases, it’s import to take a patient-centric view. What unique challenges do people with this type of disease face? How would they like their care delivered? These are some of the questions we should pose during the development of clinical trial protocols as well as during the design of patient access support programs. Because relatively few people are affected with each rare disease, how can we better engage these small patient populations? One way is by utilizing the telecommunication and information technology solutions provided by telemedicine to better connect with these patients. These solutions allow orphan product sponsors and manufacturers to educate and build awareness of clinical trials and support services available to patients and their families.

Driving Progress through Collaboration

At the event, UBC’s Vice President of Patient Access & Engagement, Nicole Hebbert, and Accredo’s Vice President of Business Development, Rob Osborne, discussed how our industry can unlock an optimized therapeutic pathway. The key: stakeholder collaboration.  When leaders from the FDA, the life science industry, pharmacies, patient advocacy groups, payers and research institutions come together and collaborate, we can:

  • Accelerate rare-disease research and development
  • Improve speed to therapy for orphan products
  • Gain a deeper understanding of the patient and their unique needs
  • Optimize care and patient outcomes

Helping Patients with Rare Diseases Overcome the Challenging Dynamics of Healthcare

In the United States, the reimbursement landscape has become very diverse with policies and resections varying from payer to payer. These challenges often lead to patients absorbing more of their healthcare cost due to higher deductible plans and decreases in coverage. Patients living with a rare disease often wait years for an approved therapy only to learn that their insurance won’t cover it or they can’t afford it. As the complexity within the healthcare system continues to increase, services that help patients navigate their complex therapeutic journey are needed now more than ever.

With all this momentum behind the need for helping improve the therapeutic experience and treatment options for rare-disease patients, UBC and Accredo can help you bring big solutions to your small patient populations. Contact us today!

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