Member and Community Relations Update

Working with Self-funded Plans: Opportunities and Challenges in 2026
by The Member & Community Relations Team

It has been a very busy first 6 months of the year within the payer world at Hemophilia Alliance. The Directors of Member and Community Relations (MCRs) work with and for HTCs across a wide range of entities within the payer space, advocating at the regional and national level for patient access to HTC clinics and HTC pharmacies.

When working with HTCs who are reviewing a patient’s insurance plan, MCRs recommend, as a first step, determining whether the patient has a fully insured or a self-funded group plan. The medical and pharmacy plan benefits can look similar across both categories of health plans. But there are important differences as well, including what laws apply (federal or state) and where a patient goes to contest a denial or to register a complaint.

When MCRs engage with self-funded group plans, we deal with a wide range of parties on the payer side. There are insurance brokers who develop health plans for their clients (employers) and, within that category, separate brokers of record for the medical and pharmacy benefits. There are consultant groups that work only within the pharmacy space – including even consultants who advise only on specialty drugs, i.e., high-cost medications. There are reinsurance or stop loss groups that provide reinsurance for self-funded employers, shielding their health plans from catastrophic claims. There are also vendors that support self-funded plans in roles such as third-party administrators (TPAs), pharmacy benefit managers (PBMs) and specialty pharmacies. Members of the MCR team meet with all these stakeholders to make the case for patient access to HTCs. Our message is always the same; HTCs are the gold standard of care for people with bleeding disorders. When working together, the integrated clinical and pharmacy programs result in the best health outcomes for patients and save payers money.

By virtue of our work across a wide range of self-funded payers, members of the MCR team are able to identify emerging trends within the employer health benefit networks. Of greatest concern, the MCR team is seeing a proliferation of Alternative Funding Programs (AFPs).

AFPs are programs sold by for-profit companies to self-funded health plans to cut costs, by securing “alternative sourcing” for specialty drugs used by plan enrollees. Sometimes the AFP will work with the health plan to formally exclude coverage for those drugs. More commonly, though, the AFP and plan adopt a prior authorization strategy: they implement prior authorization processes that by design lead to denials for targeted drugs, even though the drugs are deemed medically necessary. Upon receiving a denial, AFPs then instruct impacted patients to:

1. Apply for enrollment in the relevant drug manufacturer’s Patient Assistant Program (PAP); or
2. Move off the employer’s plan and onto a Marketplace or state-based plan; or
3. Engage in medical tourism to acquire their medication from a foreign country.

AFPs cause serious harm, depriving patients of coverage and benefits under their employer health plans. In so doing, AFPs delay (or outright deny) patient access to their needed medications, with potentially devastating consequences for patient health. They require patients to share sensitive financial and personal information, and place patients and providers in untenable positions.

If you or your patients encounter an AFP, please bring the issue to the attention of your MCR. We can point you to helpful resources and join you in educating payers about harms and risks that AFPs entail. And gathering data and examples of AFP abuses can help the Hemophilia Alliance in its ongoing advocacy with federal and state lawmakers as we urge regulators and legislators to rein in this dangerous practice.