Member and Community Relations Updates
Open Enrollment Is Here: Helping Patients Protect Access to Hemophilia Care
by Jennifer Borrillo, Senior VP of Member & Community Relations
Open enrollment is an important opportunity for people with bleeding disorders and their families to review health coverage for the coming year. Even when a patient’s current plan remains available, changes to provider networks, pharmacy arrangements, formularies, utilization management requirements, and cost sharing can affect timely access to factor products, gene therapy services, specialty care, and the patient’s trusted Hemophilia Treatment Center (HTC). A proactive review can help identify concerns before new coverage takes effect.
Key Dates for 2027 Coverage
- Medicare Open Enrollment: October 15–December 7, 2026. Changes take effect January 1, 2027.
- HealthCare.gov Marketplace Open Enrollment: November 1, 2026–January 15, 2027. Enrollment by December 15 is generally required for coverage beginning January 1; later enrollment generally begins February 1. (See https://www.healthcare.gov/downloads/apply-for-or-renew-coverage.pdf for a list of what you will need to apply or re-enroll)
- Employer-sponsored Coverage: Dates vary by employer.
- State-based Marketplaces: Deadlines may differ, so patients should confirm dates with their state exchange.
What Patients Should Review
- HTC and Provider Participation: Confirm that the HTC, hematologist, hospital, laboratory, and other essential clinicians are in network for 2027.
- Pharmacy Access: Determine whether the plan requires a designated specialty pharmacy and whether the patient may continue using the HTC pharmacy or preferred dispensing provider.
- Medication Coverage: Review the formulary for factor products, non-factor therapies, and other prescribed medications, including tier placement and any exclusions.
- Utilization Management: Look for prior authorization, reauthorization, step therapy, site-of-care, quantity-limit, or medical-necessity requirements.
- Out-of-pocket Exposure: Compare premiums, deductibles, coinsurance, copayments, and annual out-of-pocket maximums. It’s important not to pick plans based on premiums alone!
- Medical versus Pharmacy Benefit: Confirm how each therapy will be covered and billed, especially when changing products or considering gene therapy.
- Coordination of Benefits: Review how the plan works with Medicare, Medicaid, employer coverage, manufacturer assistance, or other secondary coverage.
How Member HTCs Can Help
HTCs can reduce avoidable disruptions by beginning outreach early and encouraging patients not to rely on automatic renewal. Consider sharing a brief checklist through patient portals, social media, clinic visits, and pharmacy communications. Ask patients to bring their Annual Notice of Change, Summary of Benefits and Coverage, formulary, provider directory, and current medication list to a benefits review. Document anticipated plan changes, start authorizations before current approvals expire when permitted, and establish clear escalation pathways for network or coverage concerns.
When patients compare plans, remind them to obtain confirmation directly from both the health plan and the HTC whenever possible. Online directories and formularies can change, and a plan’s name alone does not confirm that a particular provider, location, pharmacy, or therapy is covered. Patients should keep notes of calls, reference numbers, and copies of plan materials.
“Junk,” non-ACA-compliant plans are widely advertised and can lure patients with the promise of lower-cost coverage. These plans provide inadequate coverage, especially for patients with bleeding disorders. Junk plans are widely advertised and show up as top results in many Google searches (even in response to inquiries about “Obamacare”). Patients shopping for non-employer coverage should be reminded to start their search on healthcare.gov or on their official state-based Marketplace site.
Start the Conversation Now
Open enrollment is more than a yearly administrative task—it is a critical point of care continuity. Early conversations give patients, caregivers, HTC staff, and health plans more time to resolve network questions, clarify benefit requirements, and prepare for January 1. Member HTCs are encouraged to connect patients with their center’s financial counselor, social worker, pharmacy team, or other designated benefits resource for individualized support.
Why U.S. Health Insurance Feels So Complicated and What It Means for Hemophilia Treatment Centers
by Jennifer Borrillo, Senior VP of Member & Community Relations
Hemophilia Treatment Centers (HTCs) see the benefits of comprehensive, team-based care every day, but HTCs also see how insurance complexity can delay treatment, increase administrative burden, and create uncertainty for patients and families. The U.S. does not have a single health insurance system. It has multiple coverage lanes, layered regulations, and several organizations involved in paying for and approving care.
Here is a quick primer on the “many systems in one” reality and how it shows up in access to factor, non-factor therapies, gene therapy pathways, and comprehensive HTC care.
- Employer-sponsored Insurance (ESI): Most working-age patients are covered through an employer plan. Benefits, specialty pharmacy requirements, and prior authorization rules can differ dramatically across employers even within the same insurance brand.
- Individual Coverage (ACA Marketplace/off marketplace): Coverage depends on income, household size, and state rules. Formularies, network design, and specialty drug policies can vary by plan tier and carrier.
- Government-sponsored Public Programs: Medicaid/CHIP (state-run, income-based), Medicare (federally-run, age/disability-based), and TRICARE (military/veterans).
- Uninsured/Underinsured Periods: Coverage gaps can happen with job changes, renewals, or paperwork issues. Even short gaps can disrupt treatment schedules or delay approvals for high-cost therapy.
For HTC patients, program-specific rules can affect where factor is dispensed, which providers are in-network, and how home infusion supplies are covered. Coverage comes from different lanes, each with different rules. It matters because two patients with the same diagnosis can face completely different coverage pathways depending on their insurance plan. Rules are layered: federal + state + employer plan design:
- Federal requirements shape Medicare and many employer plans including standards for covered services and appeals.
- State insurance rules strongly affect individual plans, fully-insured plans, and Medicaid, so coverage details and provider networks can look different across state lines.
- Employer plan design (especially for self-funded plans) can set its own specialty drug policies, utilization management, and network arrangements often with limited state oversight.
For HTCs, this can mean different prior authorization forms, appeal timelines, and documentation expectations even for the same medication depending on the patient’s plan. Many organizations sit between the patient and their therapy. Even when a patient has “good insurance,” access often depends on how multiple entities coordinate (or don’t):
- Health Plan + Third-party Administrators (TPAs): Set coverage policies, authorizations, and member services processes.
- Pharmacy Benefit Managers (PBMs): Manage drug benefits, formularies, and often the specialty pharmacy channel.
- Provider Networks: Determine which HTC clinicians, hospitals, labs, and infusion services are considered in-network.
- Utilization Management: Prior authorization, step therapy, quantity limits, site-of-care policies, and periodic re-authorization can all affect the timing and location of care.
Prices vary by payer and the allowed amount is what counts. In the U.S., there is not one fixed price for a visit, lab, infusion service, or medication. What matters is the plan’s negotiated allowed amount, which can differ widely across insurers and networks. Different contracts mean different reimbursement rates for the same service across payers. Network participation can change patient cost-sharing and billing outcomes. Public versus private payment methods differ. For high-cost therapies, small differences in policy or contracting can have outsized effects on patient out-of-pocket costs and authorization requirements. Patients experience coverage through cost-sharing and coverage rules. Even when a therapy is “covered,” the details can determine whether it’s practically accessible.
Networks determine where patients can receive their care. Insurers use networks to manage costs. For patients with bleeding disorders, network limits can affect access to specialized teams and facilities. Out-of-network care may have higher cost-sharing or no coverage, even when specialized expertise is clinically important. Patients can face complex billing situations, for example, when multiple clinicians or facilities are involved, and verification can often take time. Network status may differ for the facility, the clinician, the lab, and the specialty pharmacy and each can affect coverage and patient cost.
What does this mean in practice for HTCs:
- Map the Coverage Lane Early: Confirm whether benefits run through medical vs. pharmacy, identify the PBM/specialty pharmacy, and clarify network status for the HTC and key ancillary services.
- Anticipate Authorization Cycles: Track re-authorization dates, required documentation, and common denial reasons to reduce therapy interruptions.
- Prepare for Transitions: Proactively support patients during job changes, renewal seasons, and Medicare/Medicaid transitions with a coverage checklist.
- Use Appeals Pathways Consistently: Document clinical rationale clearly and escalate when timelines threaten continuity of care.
- Center the Patient Experience: Explain deductibles, coinsurance, and out-of-pocket maximums in plain language so families can plan for financial exposure.
The bottom line is the complexity of insurance is not just frustrating, it directly affects timeliness, affordability, and continuity of hemophilia care. A shared understanding of how coverage lanes, networks, and authorization processes interact can help HTCs reduce delays and support patients through transitions.
Some helpful resources on health insurance:
Have a story you want to share or a topic you would like us to cover?
Also In This Issue…
Jeff Weighs In
Alliance Update
- We Have Moved!
- The Hemophilia Alliance Welcomes New Team Members!
Advocacy and Legal Update
- Medicaid Changes Start to Take Effect
- Alliance Hill Day
Administration and Operations Update
- Member Feedback Helping Shape Alliance Priorities
- A Spooktacular Fall Member Meeting: Connections, Collaboration & Community
- Speaker Spotlight, Upcoming 29th Annual Linda Gammage Social Worker Conference
Notes From The Community
- What Is a 340B Program and Why Does It Matter for People with Bleeding Disorders?