People living with amyloidosis may get to a point where working isn’t feasible. But finding ways to cover your expenses can be challenging. “I’m still not approved for Social Security or unemployment. I’m going on three weeks with no pay,” shared a MyAmyloidosisTeam member. “Trying not to be stressed, but that’s tough.”

Thankfully, several programs exist to provide financial assistance, offering a lifeline during these difficult times. Learning how these programs work can come in handy, even if you don’t need them right now.

Understanding Benefit Program Basics

The Social Security Administration (SSA) has two programs that provide financial help for people who can’t work. The first is Social Security Disability Insurance (SSDI). It’s meant for those who have worked and earned a certain level of income, which is measured as work credits. The number of work credits required to qualify changes every year.

Another program that can offer assistance is Supplemental Security Income (SSI). It’s meant for people who don’t have enough work history to qualify for SSDI or who need more help than SSDI provides. For SSI, you’ll have to prove that you aren’t making enough money and don’t have valuable assets (like a house or car) to support yourself.

Both programs require you to prove that you have a long-term disability. That means you have a health condition that prevents you from working and is expected to continue for at least one year.

Does Amyloidosis Qualify as a Disability?

There are different types of amyloidosis, but it’s considered a lifelong condition, not a short-term disability. In some cases, it’s caused by another health problem that may or may not be considered a disability, too. Amyloidosis is a disability when the symptoms or complications make it unsafe or impossible to work. These issues may include:

• Fatigue that severely limits daily activities
• Risk of heart failure
• Risk of bleeding
• Risk of kidney failure
• Shortness of breath

The Social Security Administration uses several factors to determine whether amyloidosis is a disability. They consider each case individually. The person reviewing your case will want to know when you were diagnosed, what symptoms you have now, which amyloidosis treatments you’ve received, and what your doctors and medical test results say. They’ll also need to see that you can’t stay employed, either at your old job or at a different type of job.

The Social Security Administration has a list of medical conditions that qualify as disabilities known as the List of Impairments or the Blue Book. This list includes amyloidosis of the kidney as a qualifying condition. Certain other forms of amyloidosis also automatically qualify for a fast track to benefits through the Compassionate Allowance Program, described below.

What Is the Compassionate Allowance Program?

Normally, it takes between six and eight months for the SSA to process an application for disability benefits. However, the Compassionate Allowance Program lowers the waiting time for SSDI and SSI for those with specific diagnoses.

AL-type renal amyloidosis and AL-type cardiac amyloidosis both qualify for compassionate allowance. If you have one of these diagnoses, you should be able to get approved for benefits quickly.

How To Apply for Disability Benefits

You can apply for disability benefits online by going to the Social Security Administration's website, or you can call 1-800-772-1213. Calling in lets you make an appointment to complete your application over the phone or at a nearby Social Security Office. The SSA has an online Disability Starter Kit that you can use to get ready to apply.

Before applying for benefits, you’ll need to gather comprehensive medical evidence, including:

• Your healthcare providers’ names, addresses, phone numbers
• Any medical records you have
• Blood tests and biopsy results
• Dates of your past medical visits
• Your medications, including the dosages

You’ll also need information about your past employment. Be sure to get a copy of your most recent W-2 or tax return.

Should You Get a Lawyer?

You don’t need a lawyer to apply for benefits, but you have the right to use one if you’d like. Some MyAmyloidosisTeam members encourage hiring a lawyer.

“I don’t know what your financial situation is. But if you need to get on disability, you need to get a lawyer,” advised a MyAmyloidosisTeam member. “It took me two years to finally get disability.”

“It takes anywhere from five to eight months to approve disability benefits. They also seem to be rejecting a large portion of applications, knowing that a large percentage of them will not reapply,” said another member. “My suggestion is to get an attorney who specializes in disability. The attorney’s fee will amount to 25 percent of the retroactive payment from the time you apply till the time it’s approved.”

What To Do if You Get Denied

If your first application is denied, you can submit an appeal. There are four stages to appealing a claim decision. First, you can ask for reconsideration. Someone who hasn’t seen your application before will take a fresh look at it. You can also include more evidence to help build your case. You may hear from your state’s Disability Determination Services department as your case goes through reconsideration.

If you get denied again, you can take the next step in the appeals process by asking an administrative law judge to hear your case. The judge will look over the evidence in your case and decide if they think you should be eligible for benefits.

If you still don’t agree with the results of your hearing, you can request that the Appeals Council review your case. The Appeals Council has the right to agree to review your case or dismiss your request. If they agree to review it, they might make a new decision (approve you for benefits) or send your case back to the administrative law judge.

If the Appeals Council denies you or won’t review your case, you can have it reviewed by the Federal Court. This is the highest level of the appeals process.

There’s a time limit on appealing your claim. Start the process within 60 days of your claim decision so you don’t miss your chance to appeal.

Talk With Others Who Understand

On MyAmyloidosisTeam, the social network for people with amyloidosis and their loved ones, more than 2,600 members come together to ask questions, give advice, and share their stories with others who understand life with this rare disease.

Have you ever tried applying for Social Security benefits for amyloidosis? Did you find it easy or difficult to prove your eligibility? Share your thoughts in the comments below, or start a conversation by posting on your Activities page.