Managing insurance and financial planning for HAE treatment

Last updated April 1, 2025, by Mary Chapman

Treatment for hereditary angioedema (HAE) and other types of angioedema can be expensive, even when you have health insurance.

Angioedema is swelling in the skin’s deeper layers, or in the mucus membranes. Other angioedema symptoms include abdominal pain, fatigue, and breathing problems.

Managing angioedema treatment costs can significantly disrupt your life. This is why financial planning is an important part of managing HAE. It’s also critical to be able to navigate your insurance coverage and understand the cost of angioedema medication.

Fortunately, patient assistance programs may offer financial aid for the cost of angioedema treatment. Support is also available to help with figuring out your drug coverage.

Angioedema treatment cost

Medical costs for treating HAE can be difficult to manage, and may even be a barrier to receiving treatment.

According to a 2023 report from the National Institutes of Health, the average cost of HAE treatment per person is about $42,000 annually. This includes prescription costs and hospital and other medical expenses, along with lost wages from not being able to work.

Out-of-pocket costs can sometimes force people to choose between treatment and basic needs, which can also affect a person’s mental health.

“The impact of not having your medication really impacts your life,” says Troyce Venturella, health services manager for the U.S. Hereditary Angioedema Association (HAEA). “What if you have a breakthrough swell? Or if you do have swells, now you’re sitting at the hospital being treated for that swell and may be missing work or school. Now you have this emotional toll that can have a strong impact on the patient.”

Planning your finances

The cost of angioedema treatments makes financial planning very important. This can mean deciding on a health plan or determining whether your employer-sponsored plan is suitable. It could also mean figuring out if a U.S. government program such as Medicare or Medicaid is the best financial angioedema support for you.

“I think planning for insurance is important every year because insurance plans can change and what treatments they cover can change,” says Venturella, who has HAE. “That’s a huge problem if your treatment isn’t even covered. So, it’s important to research your insurance plan to find out whether they cover your medication and whether they cover your specialist. Is that in your plan and what is your out-of-pocket?”

Depending on your situation, a Medicare specialist, health insurance specialist, financial counselor, or some combination of these individuals may be able to help you with insurance decisions and financial planning. You should also contact your existing insurer with questions about your coverage.

Venturella suggests requesting a cost-benefit analysis of your treatment plan from the manufacturer of your medication. The HAEA’s health team may also be able to look up your medications and help you figure out your potential out-of-pocket costs.

“Many people with a rare disease have more than one condition,” says Venturella. “That could mean that, while Medicine A is covered, Medicines B, C, D through Z are not covered. So do your research. Look at all your medications.”

Health insurance

U.S. doctors who were surveyed about medical management of hereditary angioedema and treatment expenses said they considered the cost of a therapy and insurance coverage among the top factors affecting their HAE treatment choices.

Angioedema treatments are generally covered to some extent by commercial health insurance policies and Medicare or Medicaid.

Because each state administers its own Medicaid program, there may be differences in what is covered. According to Venturella, however, all states cover a treatment for acute swelling attacks as well as a preventive therapy.

For the federal health insurer Medicare, the costs of treatments administered during outpatient office visits are generally covered through Medicare Part B. But you’d still have to pay any applicable copay or deductible amounts.

If you’re on Medicare and are hospitalized and treated for angioedema, Part A of the program will determine how much of the treatment is covered and the amount you must pay out of pocket.

The coverage of medications prescribed for at-home use requires you to buy a standalone Part D prescription drug plan or a Medicare Advantage plan that includes a Part D prescription element.

The new Medicare Prescription Payment Plan, which became effective in 2025, allows those enrolled in Medicare Part D or a Medicare Advantage plan with prescription drug coverage the option to pay their out-of-pocket prescription drug costs throughout the year rather than all at once at a pharmacy. This kind of flexibility can help with financial planning.

“Most people who have a rare condition, they may benefit from spreading [the treatment costs] out and being able to budget,” says Venturella.

Unfortunately, people with hereditary angioedema often must deal with insurance issues that can affect their physical and psychological health, and financial well-being. These issues can lead to more frequent swelling attacks, urgent care visits, missed work or school, and heightened anxiety.

Insurance delays in angioedema are “unfortunately very common,” says Venturella. “And when they happen, they have a big impact on patients and their families. There’s paperwork, [and] time on the phone with the insurance company or the manufacturer.”

In some instances, an individual may already have preventive medication, but treatment for acute swelling attacks is being held up.

Some of the delays are due to mistakes or omissions on authorization forms, or the use of step therapy — a cost-control strategy that requires trying a less expensive treatment before getting the one prescribed.

Assistance programs

Angioedema financial resources try to help those with the condition who are struggling with treatment costs.

The Assistance Fund, for example, provides financial assistance for angioedema treatment copayments, deductibles, coinsurance, and other healthcare-related expenses for conditions that include HAE.

If you have commercial insurance, some pharmaceutical companies offer copay assistance programs for some medications that do not have generic alternatives. RxAssist has a database of patient assistance programs run by drug manufacturers.

Other angioedema support and treatment funding that’s available through charities and other organizations include:

• Accessia Health, which provides programs and financial assistance to those with rare or chronic health conditions
• the Patients Assistance Network (PAN) Foundation, which helps people with chronic and rare disorders get needed medications
• the Patient Access Network Foundation-Fund Finder, which helps those with serious illnesses find financial assistance
• NeedyMeds, a nonprofit that helps people pay for prescriptions, find a free clinic, or understand their healthcare options
• State Pharmacy Assistance Programs in many U.S. states that help qualified people pay for prescribed medications
• Patient Advocate Foundation Co-Pay Relief, which helps with out-of-pocket costs.

Angioedema Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.