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Living with transthyretin amyloidosis (ATTR), a progressive disease where abnormal protein deposits damage organs, means relying on medications that are innovative and sometimes newly available. These treatments can make a big difference in how you feel, helping to boost your quality of life and sense of well-being.
However, accessing these therapies can be challenging, especially as these cutting-edge medications can cost hundreds of thousands of dollars per year, requiring you to navigate insurance coverage and out-of-pocket costs and find financial support. In this article, we’ll break down what you need to know about how insurance may cover ATTR medications and explore assistance programs that can help make these vital treatments more affordable.
Your health insurance may cover your ATTR therapies, but because they are specialty medications, the rules for coverage are often stricter and more complex than for common drugs. What your health insurance covers can depend on the kind of coverage you have, where you get your coverage, and the kind of plan you have.
If you have health insurance through your employer or your spouse’s employer, you likely have private health insurance under a group plan. You can also buy private coverage through the federal government or through some states. If you have a low income and you qualify based on your age and/or a disability, you may have government health insurance called Medicaid. If you’re older than 65, you have end-stage kidney disease, or you have a qualifying disability, you may have a different government healthcare program called Medicare. There are a few other options, but these are the most common types of health insurance in the US.
Each of these programs will cover ATTR therapies differently. The individual plan your employer offers or that you buy can affect your coverage too. You’ll need to contact your healthcare plan or your human resources department to find out exactly how your coverage works.
It’s important to note that ATTR treatments are very expensive, and you’ll likely need treatment for an extended period of time. Thus, the cost of these treatments over your lifetime can become very high. This can make it more difficult to access these treatments, both at home and around the world.
Some insurance plans offer ATTR drug access, while others don’t. For instance, Medicare covers a treatment called vutrisiran (Amvuttra) under Part B (medical). But in some states, Medicare Part D doesn’t currently cover a form of tafamidis called Vyndamax. On the other hand, most states cover another form of tafamidis called Vyndaqel. Figuring out how to access and afford the treatment options your amyloidosis specialist prescribes can take time and energy.
Many health insurance plans will require prior authorization for ATTR therapy. Prior authorization means that you have to get permission from your insurance for them to cover a particular treatment. This involves your doctor proving the treatment is medically necessary, meaning it is the right, appropriate, and evidence-based choice for your specific condition. Getting this authorization doesn’t guarantee that your insurance will cover your costs, but it makes it more likely. Many plans will not cover costs for these therapies without this step.
Most of the time, your healthcare provider will take care of getting prior authorization. They will submit paperwork or medical records to your insurance company explaining what other treatments you have tried (a concept often called step therapy) and why the particular treatment they are requesting is medically necessary for your current medical needs.
If your insurance company won’t approve or won’t cover a particular ATTR treatment that you need, you can appeal their decision. Your insurance company has to tell you why treatment coverage was denied, what you have to do to appeal that decision, and what your deadlines are for your appeal. If your state has a consumer assistance program to help you with the appeal, they also have to tell you how to get that help.
Additionally, your healthcare provider may be able to help you with an ATTR insurance coverage appeal. They may need to speak to the insurance company or to doctors who represent the company in a process called peer-to-peer review. Or your doctor may need to submit more records and paperwork on your behalf. Make sure they know about any deadlines or procedures your insurance company tells you about.
There are a few ways to find out how much a particular transthyretin amyloidosis therapy is going to cost, given your insurance and other details like where you live and which treatment you need. In addition to a cost estimate, always ask what your yearly out-of-pocket maximum is. This maximum is the most you should have to pay in a plan year for covered services.
Many medications, including those offered as ATTR therapies, are offered by specialty pharmacies. These pharmacies focus on helping people get expensive medications that may not be available through regular pharmacies. They will help you manage your medication therapy, which can include working with your insurance company to estimate your costs.
Your healthcare provider or pharmacy may also have a care coordinator to help you out. These people focus on helping you receive comprehensive medical care for something like ATTR across providers. They can work with your medical team and your pharmacy to help you get the treatment plan you need, and they can help you figure out your costs.
Beyond insurance coverage, there are some other financial assistance programs for ATTR therapies.
Drug manufacturer patient assistance programs are offered by drug manufacturers to help people afford medications, typically through copay assistance (for those with commercial insurance) or a patient assistance program (PAP) for the uninsured or those on Medicare/Medicaid who meet financial hardship criteria. Some common drugs used to treat ATTR include tafamidis (Vyndaqel), patisiran (Onpattro), and vutrisiran (Amvuttra). Each one of these has an assistance program offered by drug manufacturers to help people access the medications they need.
The drug company that manufactures tafamidis offers patient access coordinators (PACs) to help you figure out what your insurance will cover, how to work with a specialty pharmacy, and more. The company offers a variety of programs to help pay for the treatment, and they request that you reach out to a PAC to get help figuring out which program you qualify for.
Vutrisiran and patisiran are made by the same drug company, which offers similar assistance programs. If you have commercial (nongovernment) health insurance, you can get help paying your part of the medication cost (the copay). Federal programs like Medicare and Medicaid are legally prohibited from using these manufacturer copay cards.
For copay assistance, visit the drug manufacturer’s assistance webpage, click on the drug you’ve been prescribed, and print out the card that shows up at the bottom of the screen. If you don’t have insurance, your doctor will need to contact the drug company and submit a start form. Next, a case manager will assess whether you’re eligible to have all or most of your costs covered by their patient assistance program. If your insurance delays your coverage or your plan is changing, a case manager can help you with costs in those cases too. The website notes that most people who take vutrisiran don’t pay anything out of pocket.
Other programs are available to help cover your drug costs. They vary widely based on where you live, what type of insurance coverage you have, what kind of help you need, and your family’s income. Keep in mind that the availability of funds from these programs can change quickly, so it’s important to check their websites or call them regularly. Below are a few programs that many people rely on. For additional information, you can do your own search based on your specific needs.
The HealthWell Foundation offers funds to help cover the cost of amyloidosis treatments. They require that you have insurance coverage for your medications and aren’t receiving other assistance for what they help cover, and they look at your demographics too. You can apply online to get started.
The National Organization for Rare Disorders (NORD) can also help with your out-of-pocket costs, including for medications. They have income requirements and may require your doctor to refer you to the program, among other requirements. The program has an online application that you can start right away.
The Patient Access Network provides funds for amyloidosis medication and other costs. The requirements vary, but may include that you have Medicare, live in the United States, and meet their income qualifications, along with a few other requirements. Right now, you can join the waitlist to find out when their amyloidosis fund is open for applications again.
Your healthcare provider or an amyloidosis support group may also be able to help you find state or local programs that will help you pay for the cost of ATTR therapies.
On MyAmyloidosisTeam, people share their experiences with amyloidosis, get advice, and find support from others who understand.
What has your experience been like when you’ve tried to access ATTR therapies? Let others know in the comments below.
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Working through getting meds and price assistance must be persistent and ask all the questions. The only dumb question is the one you don't ask.
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