Accessing and affording care for myasthenia gravis remains a significant challenge for many patients. In a recent webinar hosted by the MGFA, experts from two leading patient assistance organizations shared practical guidance on navigating patient financial support programs.
Stephanie Marshall, director of patient advocacy at The Assistance Fund (TAF), and Jennifer Nunan, Vice president of clinical strategy and patient engagement at Accessia Health, outlined available resources, eligibility considerations, and strategies for maximizing support.
The Growing Financial Burden of MG Care
According to recent patient surveys from The Assistance Fund, the top challenges facing individuals with MG include:
- Affording healthcare (reported by 56% of respondents)
- Finding effective treatment
- Adjusting lifestyle to accommodate the condition
- Delays in accessing medication due to insurance barriers
Marshall noted that delays in treatment access can negatively impact both physical and mental health, reflecting concerns about the impacts of insurance denials and coverage limitations.
Types of Financial Assistance Available
Both organizations offer support to help offset the high cost of MG care, though their programs differ slightly in structure.
The Assistance Fund (TAF)
TAF’s MG program, launched in 2017, provides:
- Copay assistance for FDA-approved treatments (including deductibles and coinsurance)
- Health insurance premium support
- Medical incidental coverage, including:
- Physician visit copays
- Diagnostic testing
- Treatment-related travel (mileage, lodging, tolls) as well as airfare, lodging, and meals (within set limits and on a case-by-case basis)
- Therapy administration costs
A key differentiator: TAF does not cap assistance annually, meaning eligible patients can receive ongoing support throughout the year.
TAF operates primarily as a reimbursement-based program, though it may pay specialty pharmacies directly in some cases to reduce upfront patient burden.
Accessia Health
Accessia Health recently launched its MG program and offers:
- Copay assistance, often paid directly through specialty pharmacy coordination
- Premium support
- Travel assistance for ground travel (capped at $500 annually)
- Reimbursement for medical visit costs
In addition, Accessia provides several unique services:
- Insurance case management to help patients navigate coverage changes
- Educational resources to help patients and caregivers navigate the healthcare system
- Legal support for Social Security Disability applications and denials
Eligibility Requirements
While specifics vary, both programs generally require:
- A confirmed MG diagnosis
- U.S. residency or citizenship (TAF requirement)
- Income within defined thresholds
- Meeting program-specific insurance or treatment criteria
One important distinction:
- TAF requires patients to be on an FDA-approved MG treatment
- Accessia may assist patients not currently on treatment, provided diagnosis is verified
Both organizations verify eligibility and may conduct audits to ensure compliance.
Understanding Program Limitations
Jennifer and Stephanie emphasized several important constraints:
- No support for off-label treatments (with limited nuanced exceptions)
- No coverage for clinical trial participation
- No “double dipping” — patients cannot receive the same type of assistance (e.g., premiums or copays) from multiple programs simultaneously. However, patients can combine different types of support across programs to meet their needs.
“You can kind of put some pieces of the puzzle together,” Stephanie explained.
The Importance of Exploring Multiple Resources
Both speakers stressed that financial assistance is not “one size fits all.” Patients are encouraged to:
- Compare multiple programs (charitable organizations, manufacturers, specialty pharmacies)
- Check program status (open, waitlisted, or closed)
- Apply even if a program is waitlisted
“You’ll never see that green light if you aren’t already in line,” Jennifer noted.
They also highlighted that additional support may exist beyond traditional assistance programs, including:
- Hospital-based aid
- Community resources for living expenses
- Manufacturer patient assistance programs (though these often exclude Medicare/Medicaid patients)
Practical Tips for Applying
To streamline the application process, patients should prepare:
- Income information (monthly or annual household income)
- Provider and treatment details
- Documentation for reimbursement (receipts, proof of payment)
Both organizations offer:
- Online applications (fastest method)
- Phone support
- Options to save and return to applications
Final Takeaway
Navigating the financial side of MG care can feel overwhelming, but resources are available. The key is understanding the landscape and proactively exploring options.
“Our healthcare systems are very complex, and the patient often has to be the one to put the pieces of the quilt together,” Stephanie said.
For patients and caregivers, taking the time to research programs, ask questions, and apply—even when uncertain—can reduce the cost of care and the overall burden of disease.