Choosing the Right Health Plan During Open Enrollment

A. Insurance Network and Specialist Access

Look specifically for

• Your current specialists
• Academic medical centers
• Rare disease centers of excellence
• Neurology, rheumatology, immunology, gastroenterology, autonomic, genetic, and pain specialists

Red flags

• A plan where specialty clinics bill as Tier 3 cost-share
• Plans that exclude centers of excellence
• Networks with only one rheumatologist or neurologist

B. Medication Coverage: Formulary Review

Checklist

• Are your current medications covered?
• Are they Tier 1, Tier 2, Tier 3, or specialty tier?
• Are there quantity limits or step therapy requirements?
• Do you need prior authorization for every refill?

Red flags

• Plans where most of your medications are non-formulary
• Tier 4 copays that exceed $150 to $400 per month
• Mandatory step therapy before your current treatment

C. Durable Medical Equipment Policies

Important for patients using

• Feeding tubes
• Mobility aids
• Continuous glucose monitors, or CGMs
• Oxygen
• Infusions, ports, or peripherally inserted central catheter supplies
• Compression garments

Red flags

• DME vendors restricted to a single supplier
• Annual limits
• Coverage only for temporary conditions
• Non-coverage for wheelchairs or specialty mobility devices

D. Therapy Limits

Includes

• Physical therapy
• Occupational therapy
• Speech therapy
• Mental health care and psychotherapy

Red flags

• Annual visit caps, such as 20 physical therapy visits per year
• Non-covered conditions; many plans exclude chronic pain, ME/CFS, or EDS
• Requirements for reauthorization every six to eight visits

E. Diagnostic Testing Flexibility

Patients who need ongoing testing should verify

• Imaging policies for MRI, MRA, and CT scans
• Genetic testing coverage
• Specialized lab tests
• Out-of-network flexibility for rare lab panels

Red flags

• Experimental or investigational denials for necessary specialty tests
• Only one or two contracted imaging centers

F. Out-of-State or Multi-State Care Needs

Relevant for patients receiving care from

• Mayo Clinic
• Cleveland Clinic
• Stanford
• Children's Hospital of Philadelphia, or CHOP
• Rare disease or dysautonomia centers

Prioritize

• PPO plans
• Multi-state networks

Avoid

• HMO plans
• EPO plans
• Regional plans with narrow networks

A. Understand the Four Financial Components

1. Premium: What you pay monthly
2. Deductible: What you must pay before insurance begins paying under the plan's terms
3. Copays and coinsurance: What you pay when you receive care
4. Out-of-pocket maximum: The most you can spend in a year on covered, in-network services that count toward the limit

For chronic illness patients, the out-of-pocket maximum is often the most important number.

B. Match a Plan to Your Financial Situation

If your healthcare use is very high

Choose a plan with:

• A low deductible
• A low out-of-pocket maximum
• A higher premium

Why: You may reach the out-of-pocket maximum early, after which the plan may pay 100 percent of covered, in-network services for the rest of the plan year.

If you rely on many specialists across systems

• PPO coverage
• A large national network
• A reasonable out-of-pocket maximum
• Flexible telehealth and second-opinion benefits

If you use expensive medications, including biologics, infusions, or rare disease medications

Prioritize:

• Plans that cover your medication
• Specialty tiers with capped copays
• No mandatory step therapy

Avoid plans with high coinsurance percentages. Ten to 50 percent of a $5,000 medication may be unaffordable.

If cash flow is a limitation

• Look for a lower monthly cost with a still-reasonable deductible
• Prefer copays instead of coinsurance
• Look for predictable care costs
• Avoid HDHPs unless truly necessary

If you have unstable symptoms or a risk of hospitalization

Focus heavily on:

• The out-of-pocket maximum
• Emergency department cost structure
• Inpatient hospitalization copays
• Access to specialists who can help prevent hospital admissions

A. Rank Your Medical Priorities in Order of Danger

Ask which failures would cause the most harm to your health or finances.

1. Medication access. If necessary medications are not covered or require step therapy, this is the biggest red flag. Lack of coverage for biologics, infusions, immunology medications, migraine injectables, cardiac medications, or GLP-1 medications can destabilize health quickly.
2. Specialist access. If losing your specialists could result in hospitalization, a severe flare, or delayed treatment, prioritize a plan that keeps the most critical specialists.
3. Hospital system access. If you rely on a specific hospital for neurosurgery, GI motility care, EDS surgery, or autonomic care, choose the plan that keeps that system in-network.
4. Out-of-pocket maximum. If you know you will reach the maximum, consider choosing the lowest one available even if the premium is higher.
5. DME and therapy coverage. Feeding tubes, wheelchairs, PT, OT, infusion supplies, CGMs, and home medical equipment must remain covered.
6. Diagnostic testing flexibility. If imaging or specialty labs are essential, prioritize the plan that covers the most options even if the network is limited.

You are choosing based on what would destabilize your health the fastest.

B. Pick the Plan With the Fewest Catastrophic Barriers

When all plans are bad, choose the one that avoids catastrophic outcomes such as:

• Losing access to a life-sustaining medication
• Losing your most important specialist
• Being unable to afford care until reaching a $7,000 to $10,000 deductible
• Losing non-negotiable DME or supplies
• Lacking access to a hospital that can manage your specific disease

If a plan has flaws but is less likely to severely destabilize your health, it may be the least harmful option.

C. Prepare an Appeal Strategy Before the Plan Year Begins

If you are forced into a restrictive plan, prepare your appeal toolkit before January 1:

• Letters of medical necessity from each specialist
• Medical records documenting failed treatments for step therapy
• Specialist notes supporting the need for out-of-network care
• Rare disease guidelines supporting treatment at specialty centers
• Prior authorization templates ready to submit
• An organized medical binder or digital file system

This may increase your chances of approval after the new plan begins.

D. Use Employer Leverage if the Plans Are Unsafe

1. Request a one-off accommodation or exception

Ask human resources about:

• A plan exception for a specialty medication
• A disability-related accommodation under the ADA
• An alternative formulary tier
• A coverage exception for out-of-state specialists

2. Educate HR about plan deficiencies

Many HR departments do not understand rare disease, immunology, complex care coordination, or the effects of limited networks. Providing a specialist letter, medical summary, and formal accommodation request may shift the outcome.

3. Use the ADA or disability accommodation pathway

If a health plan removes coverage for a disability-related medication, restricts medically needed specialty care, or eliminates access to medically required equipment, you may be able to request workplace accommodations or file a disability discrimination complaint. Legal requirements vary; professional legal guidance may be necessary.

E. Evaluate External Options When Legally Allowed

1. Marketplace or ACA plans

Some families may be able to decline employer insurance and purchase coverage through a marketplace. Eligibility for financial assistance and affordability rules change over time. Review current federal and state requirements before making a decision.

2. Medicaid or Medi-Cal

Coverage may be available when income or disability-related eligibility requirements are met.

3. Dual coverage

A spouse's plan, Medicaid, or Medicare may sometimes serve as secondary coverage to fill gaps.

4. Patient assistance programs

These programs may help with high-cost medications that are not covered.

Important: Some ERISA employers may restrict dual enrollment or reimbursement for outside plans. This must be evaluated case by case.

F. If the Plan's Weakness Is Strictly Financial

Choose the plan with:

• The lowest out-of-pocket maximum
• The most predictable copays
• The lowest coinsurance percentages
• The best specialty medication coverage
• Access to your highest-cost specialists

Avoid:

• High-deductible plans
• Coinsurance-based specialty tiers
• Plans with no out-of-network coverage when you need specialists
• Plans whose formularies exclude many of your medications

G. If All Plans Are Equally Harmful, Choose Based on Survival Priorities

1. Medication access
2. Out-of-pocket maximum
3. Access to your most critical specialist
4. Hospital network
5. DME and therapy limits
6. Diagnostic testing access

Medication access, specialist access, and the out-of-pocket maximum generally matter most. Other barriers may sometimes be addressed through appeals, peer-to-peer reviews, or exceptions.

H. Use This Tie-Breaker Question

Which plan gives me the best appeal pathway?

The original guide suggests the following general hierarchy:

PPO > POS > HMO > EPO > HDHP

Appeal rights and protections vary by plan type, funding arrangement, employer, state, and federal law. Review the actual plan documents and applicable rules.