Navigating Health Insurance with Autoimmune Disease

Expert Tips and Resources

Dealing with health insurance can be a frustrating experience. Lost paperwork. Phone tag with your doctor’s office and the insurance company. The lack of transparency in what insurance will or will not cover. 

Issues with health insurance can be even more complicated if you have an autoimmune disease and you see multiple specialists or if you are considering a new drug. Diagnosing autoimmune diseases can be expensive and takes a lot of time. And often, you might have to try different types of medication before finding one that works.

In today’s article, we bring you insights on how to best navigate health insurance from two experts in the field: Ashley Holden, Health Education Manager, Access and Advocacy at the Lupus Foundation of America, and Scott Glovsky, a health insurance denial attorney based in California.

What Autoimmune Diseases are Typically Covered by Insurance? 

Most plans in the United States cover the diagnosis and treatment of autoimmune diseases. However, there are differences from plan to plan in what exactly they cover. 

Doctors and insurance companies use medical billing codes that tell the health insurance companies what service was provided (CPT codes) and indicate the patient’s diagnosis (ICD-10 codes). “The health insurance company determines what is billable based on the medical coding and then the health insurance plan outlines at what level that service is covered at,” says Holden.

What Types of Doctors/Specialists are Typically Covered by Insurance?

Before seeing any doctor, it’s important to consider whether they’re in-network or out-of-network. “The network is a group of doctors and healthcare providers, including specialties, that the insurance company has built based on a contract where they both agree to the insurer’s negotiated prices,” says Holden. “Providers not in a network are called out-of-network providers. Depending on the health insurance plan, out-of-network services cost more and/or may not be covered by the insurer.”

To get coverage for a specialist visit, you may need to see your primary care physician for a referral to an autoimmune disease specialist such as a rheumatologist or a gastroenterologist. “Typically Health Maintenance Organization (HMO) plans require referrals. Preferred Provider Organization (PPO) plans generally do not require referral,” says Holden. Other holistic health practitioners, such as acupuncturists and aromatherapists, may or may not be covered by insurance.

What are Common Difficulties Experienced by Those with Autoimmune Disease When Dealing with Insurance?

A KFF poll in 2023 found that 58% of insured adults had issues with their health insurance in the last year. Only half of these cases were adequately resolved. Below are some common problems people face when using their insurance policy.

High costs, despite insurance coverage: “Even if someone has health insurance, many still face difficulties affording their care,” says Holden. “This is especially true for someone with an autoimmune disease who may see multiple specialists.” Newer drugs – including biologics – that treat autoimmune diseases come with a high price tag that, even when covered by insurance, can result in a hefty expense for the patient. However, there are ways to cover the costs of health care beyond insurance, which are discussed below. 

Network coverage: Depending on where you live and the type of doctor you need to see, it can be difficult to find a doctor in your area that’s accepting new patients, in your network, and has upcoming availability without having you to wait months. This may be especially true for specialists.

Claim denials: Issues with payment are a common problem people face when it comes to insurance companies. The KFF poll found that 27% of insured adults paid more than they expected after insurance and 18% found out their insurance did not cover costs that they thought should be covered. Other reasons health insurance companies deny coverage can be found here.

So your Insurance Company Denies Coverage. What Can You Do?

“With a denial, never take no for an answer,” Glovsky says. “You have to be extremely proactive to deal with it.”  Having a friend or family member help deal with insurance denials can be helpful, Glovsky adds. If needed, healthcare advocates or lawyers can help determine the best strategies to appeal the denial.

The first step is to get the denial letter from the insurance company and see why your claim was denied.

“The main reason that new medications get denied is because the insurance companies claim they’re experimental or investigational,” says Glovsky. Treatment for autoimmune diseases can include newer biologics on the market. Because biologics are often more complex to administer to patients and are a newer class of drugs, they are generally much more expensive and are often denied by insurance companies.

If the denial occurred because the insurance company deems the drug “experimental” or “investigational,” you’d need your doctor to send a letter to the insurer. “It’s crucial to have the treating physicians write good letters as to why they’re not experimental or investigational, to quote the medical literature that show that they’re effective, safe, and FDA approved, and explain what they expect to happen to the patient if they don’t approve it,” says Glovsky.

If Health Insurance Doesn’t Cover a Specific Medication, What Financial Resources Might Be Available?

Patient assistance programs (PAPs) offered by drug manufacturers can provide discounted or free prescriptions for those without health insurance or are underinsured. To be eligible for PAPs, you must meet specific requirements such as showing that your insurance doesn’t cover the drug or meet specific income requirements. Another type of assistance comes in the form of manufacturer copay cards, which allow you to save on out-of-pocket costs. These copay cards require the patient to have private insurance rather than government health insurance.

Below, you can find a list of programs and resources that can help cover or lower out-of-pocket costs for medications:

Co-Pay Relief: Financial assistance for eligible patients

Cost Plus Drugs: Online pharmacy with generics at lower cost

Financial Assistance Resources: A curated list of resources by the Lupus Foundation of America

GoodRx: App to help users find lower prices and discounts for prescription drugs

NowPatient: Telehealth and online pharmacy providing free access to healthcare tools and drug coupons

Patient Access Network Foundation: Assistance with out-of-pocket costs

RxAssist: Directory of Patient Assistance Programs

What Factors Should I Consider When Choosing a Health Insurance Plan?

When choosing a new health insurance plan, some things to consider are the premium cost, the deductible, maximum out-of-pocket, and copays. “It’s important to have an insurance plan that covers primary care visits, specialist appointments, diagnostics tests and screenings, medications, and hospital visits – and that the plan has affordable copays or coinsurance for these services,” says Holden.

Another thing to consider, especially if you plan to stick with your current doctors, is whether your doctors are in-network in the plan you’re considering. If you would like to switch doctors, make sure that the new doctor is covered by your new policy. 

Lastly, since autoimmune disease treatments can be expensive, it’s important to check whether the plan will cover the medications you need. “Do your research ahead of time before you buy your insurance to see who’s going to cover the medications that you need,” Glovsky adds.

Additional Resources

• Patient Advocate Foundation: Patient advocacy for those with chronic, life threatening, and debilitating illnesses.
• Health Insurance Guide for People with Lupus: PDF guide covering the basics of health insurance, how to choose insurance policies, how to pay for health care, and advocating for yourself.

A National Report Card for Health Insurance Plans that Cover Medications for Autoimmune Diseases: Report examining medication coverage from different plans for patients with autoimmune diseases.

GAI does not endorse the views and opinions expressed in the listed resources; they are simply a sample of the resources available on managing life with autoimmune disease and other chronic illnesses.