Living with systemic lupus erythematosus (SLE), the most common type of lupus, can be expensive. This lifelong autoimmune disease may require frequent doctors’ visits, testing, and treatments. The high cost of health care in the United States often stops people with chronic conditions like lupus from getting the care they need. However, staying on your medications and checking in with your doctor regularly are key to living a healthy and comfortable life.

What can you do to make lupus treatment more affordable? In this article, we explore six ways to save money while living with lupus.

1. Understand Your Insurance Benefits

Whether you have Medicare, Medicaid, or commercial insurance, understanding the details of your coverage is important. Terms like “premiums,” “deductibles,” and “copays” can be confusing, but after a few years of living with a chronic disease, you inevitably become an expert.

If you have the option of choosing a plan, think about your past health care spending. Individuals with lupus often need several specialist appointments each year. Choosing a health insurance plan with a lower copay and deductible, even if the premium is higher, can be beneficial in this case.

Although the upfront cost is higher, the lower cost per visit will allow you to make the most of your insurance plan.

Once you have an insurance plan, it may take a while to settle on doctors in your network who work for you and are conveniently located. Once you find providers who you like and who are covered by your insurance, try to stick with them for long-term care. By knowing your benefits and staying in network with health care providers as much as possible, you’ll be able to save money each year.

2. Save on Prescription Medications

Oftentimes, medications for lupus such as corticosteroids and biologics are lifelong prescriptions and can be expensive.

There are some ways that you, your health care provider, and your insurance company can work together to help reduce the cost of your prescription drugs. Here are some tips on how to save on your medications.

Use Cost-Saving Resources From Drug Manufacturers

Many drug manufacturers offer cost-saving resources like patient assistance programs (PAPs) and copay assistance programs. PAPs provide free or discounted medications to people without insurance or who cannot afford their medications. Copay assistance programs help reduce the cost of the copay for a given drug.

Some examples of drugs for which manufacturers offer these types of financial assistance resources include:

• Anifrolumab-fnia (Saphnelo), manufactured by AstraZeneca
• Mycophenolate mofetil (CellCept), manufactured by Genentech
• Mycophenolic acid (Myfortic), manufactured by Novartis
• Voclosporin (Lupkynis), manufactured by Aurinia

You can apply for these programs online or over the phone. One MyLupusTeam member shared, “A lot of the producers of the medications offer a discount or even free medication. Go to their website and fill out the application.”

If you have Medicare or a federal or state-funded health care program for prescription coverage, you may not be able to qualify for some drug manufacturers’ cost-saving resources. Talk to your health care provider about your insurance coverage and compatible cost-saving resources.

Try Generics

Generic medications (such as ibuprofen) may be equally as effective and have the same formulation as brand-name formulas (such as Advil). You can get the same effect for a lower cost. Ask your primary care provider, rheumatologist, or pharmacist whether generic versions of your medications are available.

Shop for Bargains

Different pharmacies may charge different amounts for the same prescription. If you have access to more than one pharmacy, call ahead and ask for a quote. Some independent pharmacies may match a price you’ve been quoted elsewhere. This only applies to medications dispensed at pharmacies and doesn’t include intravenous medications.

Some pharmacies offer discounts when you order a three-month supply versus a one-month supply and opt to receive your medication in the mail. You can check to see if your pharmacy offers any discount programs on its website.

Ask for Samples

Depending on the medication, sometimes doctors can provide you with free samples of drugs that can last you a few days or weeks.

Use a Pharmacy Card

NeedyMeds provides a drug discount card that can be used by anyone, regardless of age, income, or insurance coverage. Both the NeedyMeds card and NeedyMeds mobile apps (available for iPhone and Android) can help reduce your copay for thousands of medications.

Check Your Insurance Provider’s Drug List

Feel free to have a conversation with your doctor if they prescribe you a drug that isn’t covered by your insurance. Ask them if there’s a comparable drug on your insurance plan’s preferred drug list that they can prescribe instead.

More tips on how to save on medication costs can be found on the National Resource Center on Lupus website.

3. Advocate for Yourself

MyLupusTeam members have frustrating stories of their insurance companies denying their labs or medications. One member shared, “My rheumatologist sent labs and an explanation for why I need this treatment for a flare-up” — only for their insurance company to deny it twice. “It’s just frustrating when someone who doesn’t understand what you’re going through gets to make a decision on your treatment,” the member wrote.

Unfortunately, your insurance company may not always cover the treatments that your doctor has prescribed for you.

You don’t have to take no for an answer, though negotiating with your provider may take time, effort, and frustration. Another member advised, “I would call to talk to someone at your insurance company and explain why it is so important for you to have certain treatments, medications, and such. It never hurts to call and ask questions. If you get with someone who doesn’t seem to understand, call back and talk to someone else.”

Using your voice can sometimes be the key to unlocking your insurance benefits and saving you money on critical treatments and testing.

4. Take Advantage of Tax Breaks

Did you know that when filing your taxes, you can deduct the cost of any medical bills that exceed 7.5 percent of your gross annual income? Given this, you may decide to lump together as many medical expenses as possible into one year to deduct them after spending that 7.5 percent.

If you’re employed with a company that offers flexible spending accounts (FSAs), you can set aside up to $3,050 pretax income for certain health care spending, including deductibles, copays, prescription medications, and over-the-counter medications with a doctor’s prescription.

5. Prioritize Prevention

Although the rewards of preventive care may not be immediately obvious, they will help save you money down the road. If you’re living with lupus, it’s crucial to attend all recommended screenings and tests, along with primary care appointments.

Preventing a lupus flare by continuously taking medications is much less expensive than the cost of being hospitalized for severe lupus symptoms, flares, or complications. Throughout your life, the costs saved by prevention will add up, and you’ll reap the benefits both financially and physically.

6. Know About Available Resources for Help With Health Care and Housing

The Lupus Foundation of America lists websites for resources that can help health care-related costs, including:

• Medication assistance programs
• Mental health resources
• Labwork
• Medical equipment such as wheelchairs

Check out their website to see what resources are available for your specific needs. When in doubt, talk to your primary care provider or rheumatologist about resources that are local and available.

The Lupus Foundation of America also has recommended resources for people who are having difficulty with costs that aren’t directly related to medical care, including housing and transportation.

One such resource is Benefits.gov, which includes a section where you can search among 162 programs in the U.S. that can help with:

• Buying a home
• Finding rental housing
• Reducing utility costs
• Acquiring, refinancing, or paying off loans
• Securing insurance

Other resources include:

• Housing and Urban Development (HUD) — This agency can supply information about renting, public housing, and home ownership.
• Healthcare Hospitality Network — This nonprofit offers free or low-cost lodging for people receiving medical care away from their homes and their families.
• LIHEAP.org — Funded by the U.S. government, this program offers information and resources to help cover energy costs.
• Air Care Alliance and Patient Access Network Foundation — These programs can help with transportation costs such as airfare, car rental, and lodging for people who need to travel to receive health care.

Financial concerns might arise while living with lupus, but support is available to ensure you get the medical care and other assistance that you need.

Talk With Others Who Understand

MyLupusTeam is the online social network for people with lupus and their loved ones. On MyLupusTeam, more than 225,000 members come together to ask questions, give advice, and share their stories with others who understand life with lupus.

Have you encountered financial difficulties while living with lupus? What have you done to save money on lupus care? Share your experience in the comments below, or start a conversation by posting on your Activities page.