Health Insurance Tips for the Bleeding Disorders Community

Health Insurance Tips for the Bleeding Disorders Community

How to pick the right health insurance plan and manage other common insurance challenges
Author: Michael Hickey

Picking the right health insurance plan and navigating the issues that arise can be difficult, time-consuming and oftentimes frustrating processes—especially for those with bleeding disorders. Denied claims, lack of clarity about what’s covered, and significant changes in coverage from year to year are among the headaches patients deal with.

Thankfully, there are a number of resources and people that can help. Take a look at the common insurance challenges that members of the bleeding disorders community face and what you can do about them.

Picking the Right Plan

Given the complex nature of health insurance, analyzing your options and picking the right plan can be overwhelming. Add to that the extra requirements that come with bleeding disorders—such as the coverage of factor drugs—and it becomes more difficult.

What to do: Turn to the Personal Health Insurance Toolkit from the National Hemophilia Foundation (NHF). Have this resource by your side when you’re ready to look at insurance options. Whether you’re choosing a plan in the individual market or through the health insurance Marketplace, your employer or state Medicaid program, NHF’s toolkit provides information that makes the selection process easier.

“It covers a lot of the issues you should be thinking about and want to think about when you’re shopping for plans,” says Marla Feinstein, senior policy and healthcare analyst at NHF. “It includes topics specific to anyone with [bleeding disorders].”

The toolkit includes a glossary of healthcare terms, worksheets, fact sheets and links to available guides on a number of topics. Not sure how to begin the selection process? Consult the step-by-step guide on getting started. Want to compare different plans? Fill out the Health Plan Cost Comparison Worksheet to see side-by-side comparisons.

If you need more help understanding anything related to your insurance, reach out to your local hemophilia treatment center (HTC), where social workers will be able to guide you to the appropriate resources.

Lack of Clarity About Year-to-Year Coverage

“Every year, plans change,” Feinstein says. “If it’s your providers (either your primary care or HTC) that they’re not covering anymore, then it’s very significant.”

It’s important to consistently check if your preferred or current doctor or pharmacy is still considered in network. Feinstein says it’s common for consumers to make assumptions about what’s included from year to year.

What to do: Read all mail and email communications from your insurance provider to keep up with any policy changes or updates. The provider will send you notifications of major plan changes by mail, in writing, Feinstein says. If you’re unsure about fees, what’s in network or other changes, reach out to your insurance company directly.

Paying for Medication

Given the high out-of-pocket cost of treatment for bleeding disorders, it’s not easy to cover costs.

What to do: If your out-of-pocket costs are high, consider enrolling in a patient assistance program (PAP). NHF’s online resource provides important details on a number of programs available to assist those with bleeding disorders.

With that in mind, Feinstein warns not to rely solely on the assistance of these programs because they might one day not be allowed by your insurance provider, may not be available (programs often close), or you may not be eligible. If you can, change to a healthcare plan that is more affordable while still covering your needs.

Limited Healthcare Options From Employers

“A number of employers are only offering high-deductible health plans,” Feinstein says. While some people can choose between a PPO, POS or HMO plan, others—such as hourly employees—don’t have much choice.

What to do: If you want more flexibility, contact a marketplace navigator to help you look outside of employer-provided healthcare plans. Navigators are unbiased individuals trained to help consumers, small businesses and their employees as they look for health coverage options through the marketplace. can help you find local, in-person assistance.

Difficulty with Prior Authorization

A lot of hemophilia drugs require prior authorization—approval from your health insurance carrier—before they’re covered. The prior authorization process has been criticized for its inefficiency and for delaying treatment for patients.

On top of that, Feinstein says the frequency in which drugs have to be authorized can increase. For example, you might have to authorize a drug every month when previously you only had to do it once every six months. If the authorization process requires you to go to your doctor’s office and fill out forms, that frequency could turn into a burden—especially if you live hours away.

What to do: In such situations, your insurance company is likely to review these requirements with you to implement more reasonable requirements. The nonprofit organization United Policyholders offers guidance on how to communicate with your insurance company in a way that protects you and produces positive outcomes.

Denied Claims

Your insurance company may refuse to pay a claim or decide to end your coverage.

What to do: NHF provides guidance on filing appeals and grievances when your insurance company denies a payment for a claim, terminates coverage or denies eligibility for certain things. Remember: You, the consumer, have the right to appeal your health insurance company’s decision.