Life with a rare kidney disease can get expensive. For some, the financial side of C3 glomerulopathy (C3G) or immune complex-mediated membranoproliferative glomerulonephritis (IC-MPGN) may feel more overwhelming than the actual disease.

Because C3G and IC-MPGN tend to be diagnosed early in life, they can involve decades of medical expenses. Here’s how to understand common costs so that you can prepare for the future.

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Routine tests and specialist visits

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Common Ongoing Medical Expenses

The day-to-day costs of managing C3G or IC-MPGN vary depending on the person and where you live. Common expenses may include:

• Routine monitoring (blood and urine tests) to measure kidney function and watch for changes
• Occasional imaging tests (like ultrasounds)
• Regular appointments with a kidney specialist, called a nephrologist, to track kidney function, blood pressure, symptoms, and ensure treatment is still working for you
• Appointments with specialists (like cardiologists), if needed

Travel and Related Expenses

People who live far from a kidney specialist may have travel expenses to see their providers. You may have to pay for transportation or a place to stay.

Prescription Costs

People with C3G or IC-MPGN may take medications, such as:

• Blood pressure medicines
• Diuretics (to prevent swelling)
• Cholesterol-lowering drugs
• Complement inhibitors and other new therapies
• Immunosuppressive medications

Prescription costs depend on your insurance plan and other discount programs.

Kidney Biopsy-Related Care

A kidney biopsy helps diagnose and evaluate C3G or IC-MPGN. Biopsies can come with multiple charges, such as:

• Physician fees
• Hospital charges
• Pathology services
• Follow-up appointments
• Additional testing

Ask for estimates whenever possible. Verify your insurance coverage before scheduling biopsies and other planned procedures.

Higher-Cost Situations

Routine care can add up over time. But sometimes a single event can be even more costly.

Emergency Room Visits and Hospitalizations

Even if you have insurance, you may have big bills from visiting the emergency room or staying overnight at the hospital. Reasons for hospitalizations with kidney disease can range from symptom flare-ups to infections and other complications.

Have a plan for emergencies. Choose in-network facilities and providers whenever possible.

In some cases, an urgent care facility can be a less costly option for minor emergencies that happen outside of your doctor’s normal hours.

If you have a serious medical issue, don’t hold off seeking care. There may be ways to set up a payment plan or get financial aid for your medical bills later.

Infusion Treatments

Some C3G or IC-MPGN treatments are delivered through intravenous infusions. You’ll need to go to the hospital, an infusion center, or a specialty clinic to receive treatment.

Insurance plans often require prior authorization before approving expensive infusion therapies. Your healthcare provider can submit the paperwork and help with the process.

Cost of Kidney Failure

There’s a 50 percent chance of kidney failure within 10 years of getting diagnosed with C3G. Advanced IC-MPGN can also lead to kidney failure. If this happens, dialysis or a kidney transplant is required.

Dialysis

Dialysis is a life-sustaining treatment that removes waste and excess fluid from the blood when the kidneys can no longer do so.

Once you go on dialysis, it’s a recurring treatment that you’ll need a few times a week. Fortunately, insurance and government programs may cover most of the expense for dialysis, but you may still have to pay for some costs yourself.

Dialysis clinics have social workers who can help you sort out a plan to pay for your care.

Transplant-Related Costs

If you end up getting a kidney transplant, you won’t need to continue dialysis. However, there are costs before, during, and after a kidney transplant that you should know about.

Pretransplant Expenses

Before a transplant, you’ll need several tests to make sure you’re a good candidate.

These usually include:

• Blood tests
• Imaging studies
• Specialist consultations
• Psychological assessments
• Additional screenings

With each test and specialist visit, the costs can add up.

Cost of Transplant

The total cost of kidney transplant-related care can be very high without insurance. This may include the transplant surgery, hospital stay, anesthesia, organ procurement, recovery care, follow-up visits, lab work, and antirejection medicines.

Understanding your insurance plan or searching for alternative resources is crucial for covering the cost.

Posttransplant Care

In many ways, kidney transplants can seem like a permanent solution. However, an overactive immune system may attack the transplanted kidney, too.

You’ll also need lifelong antirejection medications and ongoing lab work after an organ transplant.

Why Early Financial Planning Matters

C3G and IC-MPGN are chronic kidney diseases. Symptoms may improve or stay stable. But most people still need ongoing monitoring for life.

Your insurance coverage may change through the years, leading to unexpected bills.

For example, you may:

• Age out of your parents’ plan (at 26)
• Move to a new state
• Start a new job
• Switch from pediatric to adult providers

Keeping good records can help make these transitions smoother. Hold on to copies of your insurance cards, medical records, medications or treatment plans, and providers.

Have this info handy to handle billing questions or to get your new providers up to speed.

Financial Support and Discounts

Health insurance isn’t the only way to afford kidney disease care.

Social Workers

Hospital and clinic social workers can help you search for financial assistance programs, transportation resources, insurance options, and community support services.

These professionals are a great starting point when your finances start to feel unmanageable. If you’re having trouble getting coverage through an employer, a social worker can help you explore other options, like:

• Social Security Disability Insurance (SSDI)
• Supplemental Security Income (SSI)
• State disability programs
• Medicaid
• Medicare
• Marketplace insurance plans

Most hospitals also have financial counselors who can explain bills, payment plans, and charity care programs. Assistance programs may be available for certain situations.

Drug Manufacturer Coupons

Several drug manufacturers offer discount programs that help pay for pricey medications. You can ask your healthcare team or specialty pharmacy about available programs. You may also find this information on the drug company’s website.

Other Prescription Discounts

Aside from the drug companies, you can also find discounted medications through programs like GoodRx. These programs offer free coupons or paid subscriptions to get lower costs on certain medications.

Grants and Charities

Some nonprofit organizations provide grants to help cover healthcare and other expenses. You can research kidney organizations online and ask a social worker about local charities and social services.

Clinical Trials

Clinical trials are another opportunity for people with C3G and IC-MPGN. Participating in a clinical trial may give you access to a new treatment, including new complement therapies, as well as extra monitoring and support. However, not everyone in a trial receives the study medicine, and not all costs, such as travel or routine care, are always covered.

Your healthcare provider can help you find trials to consider. You can also look into trials at clinicaltrials.gov to ask them about.

Join the Conversation

On MyKidneyDiseaseTeam, people share their experiences with kidney disease, get advice, and find support from others who understand.

How do you plan ahead for your expenses? Let others know in the comments below.