Transthyretin amyloidosis (ATTR) treatment can be expensive, but understanding your insurance and finding financial assistance can make costs easier to manage.
ATTR is a progressive condition caused by a buildup of transthyretin (TTR) protein in the body. When this protein becomes unstable, it can misfold (lose its shape) and clump together, forming deposits in organs like the heart and nerves.
Without treatment, it may shorten life expectancy and affect your quality of life.
Because the condition requires ongoing monitoring and care, treatment costs can add up over time. With early planning and support, you can take steps to manage both your health and your budget.
ATTR develops when the TTR protein builds up in the body, so long-term treatment is often needed to slow this process and manage symptoms.
Tafamidis is the most common medication for ATTR, especially when the heart is affected. It works by stabilizing the TTR protein so it doesn’t build up as quickly. Doctors usually prescribe it for people with confirmed ATTR in the heart, and it’s taken once per day for life.
Without insurance, tafamidis can cost about $225,000 per year. Even with coverage, out-of-pocket expenses can still vary depending on your plan, copays, and any assistance programs you qualify for.
Some people pay a few hundred dollars per month, while others face higher costs.
When ATTR affects the nerves, treatments like patisiran or inotersen can help reduce the amount of TTR protein your body makes. However, these are long-term treatments and can be costly.
For example, patisiran costs between
Beyond medication, managing ATTR involves other medical and everyday expenses. Heart and nerve function tests, lab work, and specialist visits may require copays or coinsurance.
Travel to specialized centers, multiple appointments, and supportive therapies such as physical therapy, pain management, or home care can also add up. Indirect costs, like lost work time, may affect your budget too.
Because treatment for ATTR can be expensive, it’s important to understand what your insurance actually covers.
Expensive medications like tafamidis often require pre-authorization, which means your doctor has to send paperwork to your insurance company showing that the drug is medically necessary. This process can take days or even weeks, so it helps to start early.
When you talk with your insurance company, consider asking questions like:
- Does my plan cover this medication?
- Do I need pre-authorization?
- Do I have to use a specific pharmacy?
- What are my copay, deductible, and coinsurance?
- Are there limits on how much I can refill?
- Are other tests, like heart scans and blood work, covered?
As you get answers, write down the name of the person you spoke with, the date, and any reference number they give you. Having this record makes it easier if you need to follow up later.
Affording medications for ATTR can be frustrating and stressful, but there are programs that may help.
- Manufacturer copay assistance: Companies that make medications like tafamidis, patisiran, or inotersen often provide programs that lower monthly costs. These usually require a short application and insurance information. Eligibility can be based on your health plan and income. You can ask your doctor or pharmacy for guidance, or visit the “Patient Support” or “Financial Assistance” sections of the manufacturer’s website.
- Foundations and nonprofits: Organizations like the Amyloidosis Foundation and the Patient Access Network Foundation (PAN) sometimes offer grants or other resources to help with medication costs.
- Local and online support: An online search for “ATTR financial assistance” or “amyloidosis patient support” might uncover additional programs, including local ones.
Managing the costs of ATTR treatment can feel overwhelming, especially if more than one family member is affected.
Creating a detailed budget that accounts for all out-of-pocket costs can help you keep track of expenses. You can include itemized costs like:
- medications
- doctor visits
- lab work
- heart or nerve tests
- travel to appointments
Knowing exactly where your money goes can help you plan and prioritize.
With an itemized list, you can then focus on the areas causing you the most problems. For example, if your heart is affected, your doctor might prioritize medications like tafamidis over nerve-related treatments to improve your quality of life and slow disease progression.
Tracking these expenses can also prepare you for important decisions during health insurance open enrollment. When that time comes, you’ll know exactly what’s important in terms of coverage and out-of-pocket costs.
Carefully review your plan options and ask questions about copays, deductibles, and limits on certain services. This will help you determine whether a change in coverage is best for you and your budget.
Case managers and social workers are valuable resources for support, and many hospitals and clinics offer financial counseling services. These professionals can help you explore payment plans, assistance programs, and even grants to lower your out-of-pocket costs.
The financial side of transthyretin amyloidosis (ATTR) can be overwhelming, but understanding your insurance and exploring assistance programs can make costs more manageable. With the right support, you can stay focused on your health and move forward with confidence.