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Updated on October 16, 2025
Transthyretin amyloid cardiomyopathy (ATTR-CM) is a rare disorder that causes a thickening and stiffening of the heart muscle. This makes it difficult for the heart to pump blood effectively. This reduces heart function, leading to complications like heart failure and arrhythmias, and limiting what a person is capable of doing day to day.
Many people with ATTR-CM require assistance from a caregiver, such as a spouse, adult child, or other loved one. Caregivers may assist with daily tasks like meals, household chores, and getting around. Caregivers are also an important source of emotional support.
Additionally, caregivers are often a part of treatment and treatment decisions. They may communicate with a healthcare team, accompany a loved one to appointments, and manage medications and lifestyle changes at home. They may also be involved in financial aspects of care, like medical bills, insurance coverage, and budgeting for the out-of-pocket costs of treatment.
Treatment and the cost of treatment for ATTR-CM
Your loved one’s ATTR-CM treatment plan will likely involve medications. This can include medications to manage heart failure, arrythmias, and other symptoms. It can also include newer medications that help slow or stop the progression of ATTR-CM.
Some medications used to treat ATTR-CM are only available through specialty pharmacies. Specialty pharmacies fill prescriptions for medications used to treat rare or complex conditions, and also provide additional healthcare support.
Cost is something that needs to be considered when deciding how to treat any medical condition. If the cost of your loved one’s medication is a concern, the following strategies may help.
Talk to your loved one’s healthcare provider
If you have any concerns about treatment—including financial concerns—talk to your loved one’s healthcare provider. The out-of-pocket costs are a significant barrier for many people, and you will not be the first person to bring up this topic at an appointment.
Your loved one’s healthcare provider may be able to recommend strategies to help reduce the cost of treatment or refer you to other healthcare professionals who can help.
Review your loved one’s insurance coverage
Medication cost and coverage can vary between insurance plans. Check your loved one’s insurance plan and compare the prices for different medications. If a medication isn’t covered, ask your healthcare provider if there is a similar medication, and check if that medication is covered.
Review the Summary of Benefits and Coverage (SBC) document. You should be able to access this by logging into the website for your loved one’s insurance provider. Insurance websites also typically have a prescription lookup tool or a “drug formulary,” an index of medications that are covered by that insurance plan. You can also contact your loved one’s insurance provider by phone.
Look for manufacturer discounts and savings
Also visit the website for the medication that you are being prescribed and look for information on savings and support. Many drug manufacturers offer financial assistance programs to help reduce the out-of-pocket costs of medications. A person will need to meet certain eligibility requirements to participate in these programs.
Two types of programs to look for are:
Copay cards
Also known as copay savings programs, copay cards are presented to a pharmacist to apply a discount to a specific medication. Copay cards are usually issued to certain people who have insurance through an employer or insurance they have purchased on their own.
Patient assistance programs (PAPs)
These programs are intended to help cover the cost of medication for people who are uninsured or underinsured. Enrollment and eligibility requirements vary from program to program.
State pharmaceutical assistance programs (SPAPs)
Some states offer financial assistance programs for medications. Eligibility can vary from program to program and medication to medication. You can check for programs in your state by visiting the National Conference of State Legislatures.
Patient advocacy organizations
Another potential source of financial assistance are organizations that advocate for patients and the advancement of ATTR-CM research. Some organizations to look at include:
- The Assistance Fund (TAF)
- HealthWell Foundation
- PAN Foundation (Patient Access Network)
Your loved one’s healthcare provider or a hospital social worker may be able to recommend other resources. Many such organizations also offer resources for patient education and caregiver support.
Compare pharmacy prices
Some health insurance plans also have preferred, in-network pharmacies. This can affect pricing, and the cost of a medication can vary from one pharmacy to another. Check prices between local and online pharmacies.
