In the rare disease space, small and midsize manufacturers — typically generating between $100 million and $10 billion in annual revenue — are fueling much of today’s pharmaceutical innovation. These agile companies are often first to market with therapies targeting underserved or highly complex conditions. But delivering breakthrough science is only part of the challenge. Supporting patients through high-cost, high-touch treatment journeys requires infrastructure that’s just as thoughtful and personalized as the therapy itself.
For many patients, the path to treatment is filled with financial, emotional, and logistical hurdles. From benefit verification and affordability support to education, adherence, and psychosocial resources, patient service programs (PSPs) have become essential to the treatment experience.
To understand how well these programs are meeting patient needs, and where they still fall short, Two Labs and Clarivate have partnered for the third year on a comprehensive benchmarking initiative. While past reports focused on oncology and neurology, this year’s research focuses on rare disease and cell and gene therapies, offering a timely look at how PSPs are evolving in some of the most complex and fast-moving therapeutic areas.
What Sets Effective Patient Support Programs Apart
Robust PSPs have become essential for manufacturers navigating complex treatments and rare disease landscapes. When done well, they serve as a critical bridge between therapy and access, helping patients navigate affordability, logistics, education, and adherence—often while managing emotionally and physically taxing conditions. Clarivate’s research has found multiple areas where PSPs provide strong support to patient:
- Financial Support: Today, co-pay and free drug programs are the foundation of any credible PSP. These offerings—once viewed as added value—are now considered the bare minimum. But the strongest programs go further. They recognize that commercially insured patients aren’t the only ones facing barriers and proactively educate families about federal and state-level resources, such as Medicaid waivers, CHIPs, or SSA Compassionate Allowances.
- Educational Resources: The best PSPs understand that knowledge empowers patients and providers alike. Whether it’s disease-specific content, treatment timelines, or CE/CME-accredited provider tools, high-impact programs like SK Life Science’s “Xcopri University” show what’s possible. Beyond static resources, top-tier programs offer peer mentorship, webinars, and advocacy-sponsored learning opportunities to enhance trust and connection.
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