Almost 1 in 10 Americans are affected by a rare disease.1 Common challenges rare disease patients face include limited treatment options, little to no research on the disease, difficulty finding experienced physicians to treat the rare condition, and difficulty obtaining an accurate diagnosis. 2
When an accurate diagnosis is made, rare disease patients often require more resources to provide continuity of care. This includes a highly coordinated team and effort from multiple specialists, their care staff, the pharmaceutical manufacturer, the rare disease specialty pharmacy provider, and their patient support team.
Rare disease specialty pharmacies offer clinical expertise, handle complex delivery needs and provide the "high-touch" patient experience to help maintain a continuity of care. By educating payors on the complexities and subtleties of managing a rare disease patient population, rare disease specialty pharmacies can play a more proactive role in providing seamless coordination.
There are several criteria that payors should consider when evaluating a specialty pharmacy partner for rare diseases, including:
- Trends in Rare Diseases
- Rare Diseases are Difficult to Diagnose
- Traditional vs. Rare Specialty Pharmacy Distribution
- Network Development for Limited Distribution of Rare Disease Drugs
- Payor Credentialing
- Payor Operational Challenges with Rare Disease Limited Distribution Drugs
- Optimizing Patient Care Services with Rare Disease Limited Distribution Drugs
To help better explain each of these criteria, our team has created a new whitepaper on what payors should consider when evaluating a specialty pharmacy partner. Click here, or the image below, to download your copy.
1. Tisdale, A., Cutillo, C.M., Nathan, R. et al. The IDeaS initiative: pilot study to assess the impact of rare diseases on patients and healthcare systems. Orphanet J Rare Dis 16, 429 (2021). https://doi.org/10.1186/s13023-021-02061-3
2. NORD. Rare Disease Day: Frequently Asked Questions. Accessed July 20, 2022. https://rarediseases.org/wp-content/uploads/2019/01/RDDFAQ-2019.pdf