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10 Fast Facts About U.S. Health Insurance Coverage

The Immune Deficiency Foundation recently offered advice to patients who have immune deficiencies.

A hand holds an insurance card that says Individual PPO Plan

Someone who has a rare or serious disease needs a double dose of education: After learning all about their health condition, patients and caregivers then need to understand how to manage health care bills and insurance coverage.

It can be overwhelming, but the Immune Deficiency Foundation recently held a webinar to help people who have immune deficiency diseases understand how health insurance works.

Stephanie Steele, IDF’s PI Community Engagement Manager, and Abraham Yunis, IDF’s Director of Payer Relations and Policy, offered these tips. We also added advice from CSL Behring’s Kris McFalls, Senior Manager for Reimbursement and Access.

1. Know what to look for in an insurance plan. Check to learn about options. Consider your current providers and if you want to stick with them, choose a plan that includes them as “in-network,” which means that they accept your insurance and your out-of-pocket costs will be less. To be safe, call the insurance company to confirm this before committing to a new plan.

2. When choosing between plans, compare the deductibles (the amount you’ll have to pay for care each year, on top of the premium you pay for the policy itself) and the out-of-pocket maximums (the maximum amount of money that you would have to pay each year before your insurance covers all of your costs).

3. Ask about prescription medicine “copay accumulators” and “copay maximizers,” which can prevent a manufacturer’s copay assistance from applying to a person’s deductible. If it’s unclear, call member services and ask specifically if manufacturer copay assistance counts towards your deductible and out of pocket expenses, McFalls said.

4. Will your specific medicine be covered by your insurance plan? It depends and it can be hard to find out before you choose a plan. If your medicine is not on the plan’s “formulary,” you have options. Your doctor can request a non-formulary exception appeal, but you’ll need extensive documentation to justify it. It is important to remember that just because your medication is not on the formulary does not necessarily mean it is not covered, McFalls said. The formulary tells you only about the prescription benefit. Your medication may be covered under the medical benefit. If in doubt, inquire about your home infusion benefit, she said.

5. If you are newly diagnosed, know that your plan might require specific kinds of lab tests on record before they approve coverage. “It is very important that you make sure you have a thorough workup when you're being diagnosed,” Steele said.

6. Keep good medical records and save your paperwork, especially when you’re first diagnosed. Keep copies of all reports of your lab work and any details of your diagnosis – they may come in handy when switching plans or appealing a coverage decision. Take advantage when your health care provider offers access to electronic records, McFalls said. It helps ensure all of your records are documented correctly and that your health care providers have copies of all lab work and reports.

7. If your employer has chosen your plan, and it’s creating a burden for you, bring it to your employer’s attention, typically via the human resources (HR) or benefits office. The company might consider providing different options next year. A patient might be afraid to tell an employer about his or her medical problems and need for treatment, McFalls said, but know that HR departments are bound by privacy laws and must keep such details private.

8. Investigate ways to plan for health care expenses, such as flex spending accounts (FSA) or Health Savings Accounts (HSA), which allow you to put money, pre-tax, onto a card or into an account.

9. Ask questions. Private plans typically have a case manager or other person available to help talk you through any questions you have about your plans. You can also reach out to patient advocacy groups like IDF, which have experts and info that can help.

10. If coverage is denied, it’s not the end of the road, Steele said. Your doctor can call the insurance company to explain the situation, which is called a peer-to-peer review. He or she also can ask for the credentials of the person who has denied the coverage because it’s important that a relevant specialist is reviewing your case, she said.

Watch the full IDF webinar