Facing autoimmune hemolytic anemia (AIHA) shouldn’t be overwhelming. Learn how to secure the right health care coverage for managing AIHA effectively, as treating the condition can be expensive, and navigating health care expenses comes with its own set of challenges. Prescription drugs, medical procedures, hospital stays, and travel to see hematology specialists can cost thousands of dollars every month. Public and private health insurance and assistance programs for prescription drugs can help to cover the costs of treating warm or cold AIHA.

Autoimmune hemolytic anemia is a rare autoimmune disorder that can be life-threatening if it’s not treated. AIHA occurs when your immune system attacks and destroys healthy red blood cells. There are two types of AIHA: warm AIHA, when certain antibodies attack and destroy red blood cells at normal body temperatures, leading to anemia, and cold AIHA, where these antibodies target and destroy red blood cells at cold temperatures, also causing anemia.

The Cost of Treating AIHA

Depending on the AIHA treatments your doctor recommends, paying for medications can be extremely pricey. Some of the drugs used to treat AIHA are classified as specialty drugs, which are drugs prescribed for chronic (ongoing) and complex conditions. Two examples include rituximab (Rituxan) the first-line therapy for warm and cold AIHA, and sutimlimab-jome (Enjaymo), a drug for cold agglutinin disease (a condition when certain antibodies in the blood cause red blood cells to clump together at cold temperatures). Specialty drugs usually have a high monthly cost.

Other prescription medications used to treat AIHA, like corticosteroids, are much more affordable. If you have insurance, you can expect to have a very low copay for a drug like prednisone. If you’re paying out of pocket, your costs should also be very low.

Apart from covering medication expenses, you might also need to pay the costs of medical procedures such as immunoglobulin infusion (administration of immune system proteins to fight infections), blood transfusion, or splenectomy (spleen removal).

If your AIHA is caused by another illness, such as systemic lupus erythematosus (SLE) — the most common form of lupus — or another autoimmune disease, you may need to pay for treatments for these conditions. Many of the drugs used to treat lupus and various other autoimmune disorders are also considered specialty drugs.

Health Insurance for People With AIHA

Your AIHA treatment will be much more affordable if you have some kind of public or private health insurance, including the following:

• Medicare
• Medicaid
• Veterans Affairs health care
• Individual health insurance through the marketplace
• Job-based health insurance

Below is a summary of these health insurance plans, eligibility requirements, and their benefits.

Medicare

Medicare is the federally sponsored health insurance program in the United States that covers adults age 65 and older and people with disabilities. Medicare has four parts: A, B, C, and D.

Part A covers:

• Inpatient hospital care
• Skilled nursing facility services
• Hospice
• Lab tests
• Surgery
• Home health care

Medicare Part B covers:

• Doctor and other health care provider services and outpatient care
• Durable medical equipment
• Home health care
• Some preventive services

Medicare Part C is an alternative to original Medicare and includes private Medicare Advantage plans that you can choose to enroll in. Part D provides limited prescription drug coverage.

If you receive benefits from Social Security or the Railroad Retirement Board (RRB), you will automatically be enrolled in Parts A and B when you turn 65. Similarly, if you are under 65, have a disability, and have received Social Security disability benefits or RRB benefits for at least 24 months, you will automatically be enrolled in Parts A and B.

Medicare will send you a “Welcome to Medicare” packet and a red, white, and blue Medicare card three months before your 65th birthday. If you’re over 65 but do not receive benefits from Social Security or RRB, you will need to sign up with Medicare to get Medicare Parts A and B at the Social Security website.

If you are diagnosed with AIHA, you will likely want to enroll in a prescription drug coverage plan through Medicare Part D. You can shop for and compare drug plans through the Medicare Plan Finder. Once you have selected a drug plan, you may enroll through the Medicare site or the plan’s website. In selecting a Medicare Part D drug plan, you will want to check the plan’s list of covered drugs, to make sure that your prescription drugs are included.

Medicaid

Medicaid is a state-operated health insurance program for people with low incomes, families, children, pregnant people, the elderly, and people with disabilities. Medicaid programs are different from state to state, so benefits and out-of-pocket costs vary by state program. Most Medicaid programs cover services including:

• Hospital services
• Nursing facility services
• Home health services
• Physician services
• Prescription drugs

You may enroll in Medicaid at any time of the year through your state’s Medicaid website or phone number. To learn more about enrolling in Medicaid in your state, head to your state’s Medicaid website. Check if you qualify for Medicaid by filling out a health insurance application on HealthCare.gov, the U.S. federal health insurance website. If you or a member of your household qualifies for Medicaid, you will be contacted by your state agency to continue the enrollment process.

Veterans Affairs Health Care

If you served in the active military, you may be eligible for health care services through the Department of Veterans Affairs (VA). VA health care benefits cover a range of services and medical treatments, including:

• Preventive services
• Inpatient hospitalizations
• Urgent and emergency care services at VA facilities
• Prescriptions written or approved by a VA doctor
• Therapy and rehabilitation services

Individual Health Insurance

Individual insurance plans are for people who are either:

• Self-employed
• Ineligible for employer-covered health insurance plans
• Ineligible for Medicare or Medicaid

You may enroll in individual health insurance through HealthCare.gov. The site may direct you to your state’s health insurance exchange.

Treatment options for AIHA may vary in coverage under different insurance plans. Most plans cover:

• Basic emergency services
• Hospital services
• Prescription medications
• Preventive services

Before selecting a plan, make sure it covers your physicians as well as the services and medications that you need.

Job-Based Health Insurance

Job-based health insurance — also known as employer-based insurance or group coverage — includes various health insurance plans offered by employers or unions to their employees as an employment benefit. If you work at least 30 hours per week at a company with more than 50 employees, your employer will likely offer you some form of health insurance coverage. Companies with fewer employees may also offer benefits. If you have AIHA and don’t have a job, job-based health insurance may still be available to you through your spouse or parent (usually up to age 26).

There are several types of job-based health insurance plans, which vary in costs and services covered. Make sure to review your options carefully and discuss any questions with your company’s human resources department when selecting an insurance plan. Click here for additional information on health insurance plans, such as off-market, direct primary care, health care sharing ministries, and Indian Health Service, etc.

Additional Resources for Affording Treatment

Various other public and private programs offer some type of financial support for AIHA treatments, whether or not you have insurance. Some of these resources include:

• Patient assistance programs — NORD helps connect people with rare diseases to financial assistance, including aid for diagnostic testing, travel for clinical trials, or meeting with specialists.
• BenefitsCheckUp — This free service from the National Council on Aging provides information and resources that help people afford benefits, including medications, health care, housing, and utilities.
• NeedyMeds — This nonprofit organization provides information and resources for making prescription drugs more affordable. Their website also offers a list of state-sponsored programs that help with financial assistance for medications.
• Medicine Assistance Tool — The Pharmaceutical Research and Manufacturers of America offers this free web tool. It matches insured and uninsured people with financial assistance resources and programs for medications.
• RxAssist — This is a database of patient assistance programs provided by pharmaceutical companies that offer low-cost or free medications.

Talk With Others Who Understand

On myAIHAteam, the social network for people with AIHA and their loved ones, more than 1,100 members come together to ask questions, give advice, and share their stories with others who understand life with AIHA.

Do you have AIHA and health insurance? Do you have tips for covering treatment costs? Share your experience in the comments below, or start a conversation by posting on your Activities page.