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.

William B. Wong is an employee of Genentech, Inc. and has Roche stock/stock options. Irina Yermilov, Hannah Dalglish, and Sarah N. Gibbs are employees of PHAR (Partnership for Health Analytic Research), which was paid by Genentech, Inc. to conduct the research described in this manuscript.

This study was funded by Genentech, Inc. Genentech, Inc. were involved in conducting the study.

I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

Yes

The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The study protocol, screening tool, and survey were reviewed and approved by the Western Institutional Review Board.

I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals.

Yes

I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

Yes

I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable.

Yes

All data produced in the present study are available upon reasonable request to the authors