• Different types of disability benefits are available for people with MPNs who qualify.
• Applications for disability depend on your inability to work.
• You may appeal if you are denied disability benefits.

Myeloproliferative neoplasms (MPNs) can make work difficult or impossible. Many symptoms of these conditions are often subtle and do not progress to leukemia or lymphoma. Some, such as bone pain or chronic infections, can interfere with a regular work schedule. Moreover, treatments or drugs for managing these conditions may cause side effects that render you unable to work. This loss can feel especially daunting for people whose health-care coverage is tied to their jobs.

People with MPNs who are no longer able to work may seek Social Security disability benefits, which can replace lost income. The process of applying for a disability claim can feel intimidating. Appealing a denied claim can also prove challenging.

Understanding the process ahead of time can make applying easier, including what the U.S. Social Security Administration (SSA) considers to determine disability and what information you’ll need to provide.

Disability Benefit Programs in the United States

The United States offers two different federal disability programs, Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). To qualify for either program, you must have a disability that stops you from working. This includes your current job as well as any other types of work.

SSDI provides benefits to people with a recent full-time work history. The funds are drawn from payroll taxes. If you are approved for SSDI, you can receive benefits six months after the date your disability began. You are eligible for Medicare 24 months after you start receiving SSDI.

SSI offers disability benefits to low-income individuals, regardless of work history. If you are approved, you can receive benefits in the next month. You may also be eligible for back payments of SSI if you became disabled before your SSI was approved.

In most states, SSI eligibility qualifies you for Medicaid. In Alaska, Idaho, Kansas, Nebraska, Nevada, Oregon, Utah, and the Northern Mariana Islands, you have to apply for Medicaid separately from SSI, but the criteria are the same for both. Eligibility criteria for SSI recipients varies across states.

Almost every state provides an SSI supplement, with these exceptions: Arizona, Mississippi, North Dakota, and West Virginia. The eligibility rules for supplements vary by state.

There is an asset cap to receiving Supplemental Security Income: $2,000 in assets for individuals or $3,000 for couples. The Social Security Administration has a list of which assets (“resources”) are considered. Your primary residence, household belongings, and one personal vehicle are not counted among these assets.

It’s possible to get both SSDI and SSI if you have very limited funds and have a work history.

How Is Disability Defined?

The SSA will evaluate several factors to determine whether someone’s disability makes them eligible for benefits. Criteria for eligibility include the following:

• You are likely ineligible for monthly benefits if you earn $1,260 or more a month. If you earn less than that amount, you may still be eligible for a reduced amount.
• You must be incapable of performing basic tasks required for most jobs, including standing for extended periods, walking, lifting, sitting, and remembering. You must not have been able to perform these tasks for at least 12 months.
• You must have a recognized disability. The Social Security Administration provides a Listing of Impairments that prevent working. MPNs are listed under Hematological Disorders, specifically myelofibrosis and MPNs that require red blood-cell transfusions on a regular basis. Even if your specific medical condition isn’t listed, you may still be eligible. (Essential thrombocythemia and polycythemia vera, for example, are not specifically listed by name.)
• You must be unable to do any work you did previously. If you’re applying for SSI, a past work history is not necessary.
• You must be unable to do any other form of sustainable work, sometimes called “substantial gainful activity.” The Social Security Administration will consider your diagnosis, age, medical history, education, and work history, as well as any other skills you have that might be applied to work.

Applying for SSDI and SSI

There’s a lot of paperwork needed to apply for disability benefits for people with MPNs. The Social Security Administration offers a checklist of necessary application information. Below is a summary of what you’ll need to provide.

Information About Yourself and Your Family Members

• Your full legal name, date of birth, and Social Security number
• Full names and dates of birth of your current or previous spouses, and dates of marriage, divorce, or death
• Full names and dates of birth of your children
• Bank account information

Medical Evidence About Your MPN

• The name and contact information for your oncologist, hematologist, or any other medical providers who can discuss your condition and related symptoms
• A complete list of medications, both past and present, and any medical imaging and test results, such as red blood cell counts and platelet counts
• A description of how your MPN symptoms impact your ability to engage in daily activities like shopping, cooking, and cleaning

Total Employment History

• Earnings from the past year
• Any current employers or ones you have worked for in the past two years
• A complete work history from the past 15 years, including any jobs from before you became disabled
• Whether you are getting or intend to receive workers’ compensation
• Dates of military service

Documents

• Birth certificate
• Social Security card
• Proof of citizenship
• W-2 or other tax forms from the previous year
• Any medical records about your condition
• Proof of any workers’ compensation you have received

You can apply for SSDI online if you aren’t currently receiving benefits and if you haven’t been denied in the past 60 days. You may use this approach if you were born in the United States, have never been married, and are between 18 and 65. If you don’t meet any of those criteria, you can still apply at a local Social Security office or over the phone.

Appealing a Disability Application Rejection

It takes an average of three to five months to process an application for disability benefits. Approval can take even longer.

Only 21 percent of those who applied for disability benefits between 2009 and 2018 were approved on their first attempt. You can appeal the decision if your application is denied. The first step is reconsideration, when your case will be evaluated by someone who did not take part in the first evaluation. About 2 percent of applications that weren’t approved the first time were approved during reconsideration from 2009 through 2018.

If necessary, you have the option of filing a second appeal, which includes a hearing by an administrative law judge trained in disability laws. You may have a disability attorney represent you at this hearing. Some law firms specialize in disability hearings. In most cases, these disability lawyers do not require a set, upfront payment; rather, they will take a percentage of any benefits you do receive.

If you are denied at this level, you can ask the Appeals Council to review your case and make a decision on it. About 8 percent of SSDI claims between 2009 and 2018 were approved during a hearing with an administrative law judge or the Appeals Council. If you are denied at this level, the only remaining option is a federal court hearing.

Consider These International Resources

If you’d like to research more about disability benefits in countries outside of the United States, check out these resources, listed by country:

• Australia — Payments for People Living With an Illness, Injury, or Disability
• Canada — Disability Benefits
• Denmark — Disability Pension
• Finland — Disability Pension
• Great Britain — Personal Independence Payment (PIP)
• Iceland — Disability Pension in Iceland
• Ireland — Operational Guidelines: Disability Allowance
• The Netherlands — Invalidity Benefits
• New Zealand — Disability Allowance
• Norway — Disability Benefit
• South Africa — Old Age, Disability, and Survivors
• Sweden, UK — Benefits for People With Disabilities

Get the Support You Need

On myMPNteam — the social network for people with myeloproliferative neoplasms — members come together to ask questions, give advice, and share their stories with others who understand life with MPNs.

Have you applied for Social Security disability benefits for MPNs? Do you have any advice about the process? Comment below or start a conversation on myMPNteam.