Support members with rare diseases

We help members navigate rare diseases with our holistic, customized approach to care.

Learn more about rare diseases  

More than 7,000 rare diseases impact over 30 million people in the United States. Many of these conditions are life-threatening, yet most lack effective treatments. Developing drugs, biologics and devices for rare diseases is particularly challenging due to the complexity of these conditions and the limited understanding of their natural history.1

30M

30M Americans are affected by rare diseases.2

Orphan drugs, developed to treat rare and often life-threatening conditions affecting fewer than 200,000 people, have become essential in addressing the unmet needs of those with orphan diseases.3 Since the Orphan Drug Act was signed into law in 1983, the FDA has approved hundreds of drugs for rare diseases, but most rare diseases do not have FDA-approved treatments. Orphan drug costs are a concern from a cost perspective. For example, orphan drugs have an average annual cost of $32,000, and more than a third of drugs with orphan indications cost more than $100,000 annually.4

$32K+

The average cost of an orphan drug in the United States is $32,000 per year, but the cost can range from $6,000 to over $500,000 per year.4

Prime has studied and published drug super spender trend information and found that 32 per 100,000 commercially insured members are drug super spenders and half have a rare disease.5 Prime’s drug super spender expertise has allowed us to build an industry-leading drug spender predictive model that is available to clients for which Prime has integrated medical and pharmacy benefits data, through Insights+.

A comprehensive approach to savings

Expertise & predictive analytics 

Look ahead with our super spender predictive model, which uses integrated pharmacy and medical claims data to identify people with rare diseases who may use $250,000+ in drug therapies per year.  

Clinical rigor and outcomes tracking 

Help your members get the right treatments with comprehensive policies, proactive pipeline monitoring and rigorous utilization management (UM). 

Specialized pharmacists 

Get support from specialized pharmacists who reach out to providers to optimize drug therapy and report savings back to you. 

Choose what works best for you and your members 

Footnotes

*All brand names are property of their respective owners.
**The programs listed are not available to all clients. Please check with your representative if you are interested in learning more.
1 Rare Diseases at FDA (n.d.). U.S. Food and Drug Administration. https://www.fda.gov/patients/rare-diseases-fda#:~:text=An%20orphan%20drug%20is%20a,drug%20development%20for%20rare%20diseases
2 Rare diseases. (2023, November 16). National Institutes of Health (NIH). https://www.nih.gov/about-nih/what-we-do/nih-turning-discovery-into-health/promise-precision-medicine/rare-diseases
3 NCI Dictionary of Cancer Terms. (n.d.). Cancer.gov. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/orphan-drug
4 Aitken, M., IQVIA Institute, National Organization for Rare Disorders, Gardocki, B., Ghotkar, O., Nass, D., Simorellis, A., & Soni, D. (2020). Orphan Drugs in the United States: Rare Disease innovation and cost trends through 2019. In National Organization for Rare Disorders (pp. 2–21) [Report]. https://rarediseases.org/wp-content/uploads/2022/10/orphan-drugs-in-the-united-states-NRD-2020.pdf
5 Starner, C. I., Bowen, K., & Gleason, P. P. (2022). Drug super spender tsunami: An integrated medical and pharmacy benefits assessment. Journal of Managed Care & Specialty Pharmacy, 28(11), 1200–1206. https://doi.org/10.18553/jmcp.2022.28.11.1200

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