The complexities of managing the care of a rare disease patient are tremendous. Several models of care are efficient when optimizing patient care services with rare disease limited distribution drugs; however, the most promising is the concierge model. This model is where all communications would filter through the health plan. The health plan has a line of sight to precisely what that patient needs and where to get their drug. This is resource heavy and cannot be for everyone, but every health plan can likely think of 10 member patients that could benefit from this type of service. The concierge model aims to provide the best outcome for each patient without inundating them with multiple touchpoints.
According to Chandra Wahrgren, MBA, SVP, Corporate Pharmacy Enterprise & Innovation, Moda Partners:
“We just instituted about a year ago a digital platform as a 360-degree patient care approach, aligning to the concierge model concept. Our program really becomes an extension of care for our provider and helps build the relationship with our provider networks.”
How can we connect all stakeholders through a process that can be more easily duplicated and less resource intensive? The rare disease specialty pharmacy might be in the right place at the right time to be positioned as the single point of contact (SPOC) and be the conduit between the multiple stakeholders. The rare disease specialty pharmacy can provide clinical case management after the warm transfer to assist with the specific rare disease patient needs.
With the increasing percentages of high deductible health plans, where patients struggle with high deductibles, copayments, and coinsurance percentages, the rare disease specialty pharmacy can provide solid financial case management by assisting with patient affordability by exhausting all possible resources to reduce patient out-of-pocket expenses. A caregiver support program designed to include the spouse, the loved one, and other support members ensures that the patient is compliant in taking their medications and understands the caregiver’s needs to support them on this journey best is critical. We want to treat our patients the same way we would like to be treated if we were in that situation. We all have a shared responsibility to take care of the patient.
Tom Shaughnessy, SVP, Payor Services & Managed Care, Orsini Specialty Pharmacy, states:
“Treating rare diseases is a family affair. Many forget that 40-50% of our patient population are children with unique needs, which puts a lot of stress on their families. As specialty pharmacies, we must consider this as we think about the day-to-day aspects of their care.”
Optimizing patient care for rare disease limited distribution drugs requires a multi-faceted approach incorporating education, support, and collaboration among healthcare providers. By leveraging these ideas, healthcare systems can improve access to specialized care, empower patients to manage their conditions effectively, and ultimately enhance the quality of care for individuals with rare diseases.
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