A descriptive survey of patient experiences and access to specialty medicines with alternative funding programs
Authors: Wong William B. , Yermilov Irina , Dalglish Hannah , Bienvenu Lori , James Jonathan , Gibbs Sarah N. 
Published: July 2024

Background

Alternative funding programs (AFPs) seek to reduce plan sponsor costs by excluding specialty drugs from a beneficiary’s plan coverage and requiring patients to obtain medications through alternative sources (typically, the manufacturer’s patient assistance programs [PAPs]) via an AFP vendor as a third-party).

Objective

To describe patients’ experiences and medication access with AFPs, which have not been explored previously.

Methods

A survey instrument consisting of optional single- and multiple-choice questions with branching logic was administered to patients recruited from an online patient panel and a patient advocacy group who had experience with AFPs. The survey assessed patients’ awareness of AFPs from their employers, experience with the PAP application process via the AFP vendor, timeliness of medication access (if granted), and/or the health impact of any delay in access. All analyses were descriptive and exploratory subgroup analyses were conducted by disease area and reported income levels.

Results

In total, 227 patients were included in the final sample. Most patients (61%) first heard of the AFP as part of their health benefit when trying to obtain their medication. Up to 88% of patients reported being stressed owing to the medication coverage denial and the uncertainty of obtaining their medication. Over half of patients (54%) reported being uncomfortable with the benefits manager from the AFP vendor. On average, patients reported waiting to receive their medication for approximately 2 months (68.2 days); 24% reported the wait for the medication worsened their condition and 64% reported the wait led to stress and/or anxiety. Patients who indicated the wait time negatively affected them had considered a job change or left their job at a 3–5-fold higher rate than those who reported no impact from wait time. Patients with hemophilia and other bleeding disorders reported receiving their prescribed medication less often than patients with other conditions (63% vs 82%), while more patients with lower incomes (< $50,000 vs > $50,000) reported not receiving any medication (12% vs 5%).

Conclusions

Most patients who obtain their specialty medicines via AFPs reported being uncomfortable with the process and experiencing treatment delays, which may have been linked to disease progression, worsened mental well-being and consideration of a job change. Employers should be aware of the potential downstream impacts on employee health, retention, and the employee–employer relationship when considering implementing an AFP into their health plan.

Plain Language Summary

Patients who have used alternative funding programs (AFPs) to access their medication were surveyed to understand their experiences. We found that using AFPs may lead to delays in patients receiving their medication, which may lead to worsening of their disease and add to their stress/anxiety. Employers should be mindful that, because of AFPs, patients reported considering leaving their jobs to find a role with better insurance coverage.