How to Find Low-Cost Health Insurance and Other Support After a Diagnosis of Rare Disease

Living with a rare disease can be very difficult. It often takes several years to get a correct diagnosis. Then, once the diagnosis is right, drugs are often hard to access and extremely expensive. So, it’s no surprise that people with rare diseases rack up burdensome medical bills.

Among the largest out-of-pocket expenses for people with rare diseases are: 

• Costly drugs and treatments

• Caregivers to help with daily activities

• Modifying home and cars

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Adding to the financial stress are:

• An inability to work

• Loss of health insurance benefits

What’s a rare disease?

A rare disease, or “orphan disease,” is one that affects fewer than 200,000 people nationwide. There are roughly 7,000 rare diseases. They include infections, autoimmune diseases, genetic disorders, cancers, and more. Some examples are multiple sclerosis, cystic fibrosis, stomach cancer, and toxic shock syndrome.

Patients may want to connect with others who have their disease, or with researchers and doctors. They can do so by enrolling in disease registries such as:

• IAMRARE® Registry Program

• Coordination of Rare Diseases at Sanford (CoRDS)

• ACCELERATE registry

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The National Institutes of Health (NIH) maintains a list of registries. Patients can provide information about their conditions there. They can also sign up to take part in medical research.

The National Organization for Rare Disorders (NORD) gathers detailed data about rare diseases. The database holds information about more than 1,200 disorders. It covers each disease’s symptoms, drug and treatment options, and support organizations.

How much does care for a rare disease cost without insurance?

It’s hard to estimate the medical costs of people without insurance. There is no system for collecting that data. But it’s clear that living with a rare disease can be very expensive. The evidence: medical bills of Americans who do have insurance. That data reveals that each year, a person with a rare disease averages almost $27,000 more in medical costs than a person without one. The National Economic Burden of Rare Disease Study says almost half (49%) of those costs are for hospital inpatient and outpatient care.

Still, there are resources that can help.

What support resources are available for people with rare diseases?

People with rare diseases face many nonmedical costs. Their expenses can range from homeschooling to transportation to special foods. Patients may also have unusual needs that can take a physical, emotional, and financial toll. Here’s where to find help:

Home care and support

• The NIH’s Genetic and Rare Diseases Information Center (GARD) maintains a directory of rare diseases by category. Each disease page lists dedicated advocacy groups that lend support.

• The National Organization for Rare Disorders (NORD) has an extensive database. It’s full of links to resource organizations. NORD itself gives grants to caregivers through its respite program.

• For caregivers of veterans, the U.S. Department of Veterans Affairs provides many helpful resources and services. They include a call-in support line, peer mentoring, and at-home services.

• The Patient Advocate Foundation's (PAF) case managers guide people to assistance programs. Many of these programs provide funds for living expenses like food, rent, and utilities.

Medical support

• Uninsured and underinsured people can turn to the Patient Advocate Foundation (PAF). Its no-fee case managers help patients sign up for free or low-cost healthcare and medicine programs. Case managers assist people who are applying for Medicaid, Medicare, and ACA marketplace insurance. You can see if you're eligible for case management services with PAF's helpful checklist.

• Many people with rare diseases may benefit from the American College of Medical Genetics and Genomics' searchable database. It lists and maps genetic clinics by city, state, and specialty.

Pharmaceutical support

• The National Organization for Rare Disorders (NORD) has an extensive list of drug access programs. The information is organized by condition.

• The Pharmaceutical Research and Manufacturers of America (PhRMA) offers a Medicine Assistance Tool. You enter some information about your medication, location, household size, and income. Then, the tool shows you prescription drug programs available to you.

• RxAssist compiles information about pharma-run drug access programs. You can search the database by medication or company name. There's information on discount cards and a state-by-state directory of medication assistance programs.

Financial support

• The Patient Advocate Foundation (PAF) runs a copay relief program. It provides funding for medical treatments and prescription drugs. PAF's financial aid division offers grants for treatment-related expenses like transportation or food.

• Patient Services Inc. supports people who have public or private insurance. The group helps them cover copays and premiums, out-of-pocket costs for doctor visits, and travel expenses. Patients can search by condition and insurance type. Program availability varies.

• The National Organization for Rare Disorders (NORD) keeps a list of resources sorted by disease category. Check it out to see if you can get help with health insurance premiums and copays.

• Patient advocates with The Assistance Fund work with underinsured people. They find funding for deductibles, coinsurance, medication copays, and other health-related costs.

• Good Days is another nonprofit advocacy organization. It helps with money for copays, travel, premiums, and diagnostic testing.

• The Keep Swimming Foundation contributes toward nonmedical expenses. These might include rent, mortgage payments, transportation costs, and hotel lodging.

• Vital Options International offers a financial hardship grant.

• The HealthWell Foundation gives grants for medical treatments, insurance copays, and other costs.

• Spare Key's Help Me Bounce Program specializes in crowdfunding. It asks the public for direct donations to families in financial need due to a critical illness. Patients and their families apply for inclusion.

• Help Hope Live raises funds for uninsured medical expenses. It focuses on expenses involving transplants or catastrophic illness and injuries.

Where can I get medical help without insurance?

People without health insurance can get inpatient medical treatment at nonprofit hospitals. By law, these hospitals must make charity care (aka indigent care) available to needy patients. Each hospital has its own eligibility rules. Inquire early for best results. 

Other places for treatment or medical care without insurance:

• Hill-Burton facilities provide free or low-cost health services for people in poverty. There are 128 of these facilities nationwide. 

• Community-based federally qualified health centers may be an option for disease management. These centers provide basic care. Patients pay according to a sliding-fee scale.

• Essential hospitals (sometimes called safety-net hospitals) provide healthcare for all, including the uninsured. People can find hospitals in their state at the America’s Essential Hospitals website.

• St. Jude Children’s Research Hospital treats rare cancers and other catastrophic diseases. Treatment is available to eligible patients regardless of a family’s ability to pay.

Can I get health insurance if I am too ill to work?

Being unable to work can cause you to lose your health insurance. Thanks to COBRA, you can stay on a former employer’s insurance plan — if you can afford the premiums. If you can’t, there are still some ways to get insurance coverage, even with a pre-existing condition:

• Apply for a low-cost ACA plan. Losing a job is what’s known as a qualifying life event for ACA insurance. This means you can sign up for a policy within 30 to 60 days of termination. You wouldn’t have to wait for the health insurance marketplace’s open enrollment period.

• Apply for Medicaid. You can qualify at any time, as long as you meet your state’s requirements. In states that expanded Medicaid after passage of the ACA, your eligibility depends on income alone. Kids with rare diseases can be covered by the Children’s Health Insurance Program (CHIP).

• Apply for Medicare. People under age 65 with certain diseases qualify for Medicare with no waiting period. These conditions are amyotrophic lateral sclerosis (ALS) and end-stage renal disease (ESRD). Other people with disabilities can apply for Medicare after they have been receiving Social Security Disability Insurance (SSDI) for 2 years.

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Written by:

Arnesa A. Howell

Arnesa A. Howell is an award-winning freelance writer, editor and content creator based in Washington, D.C., writing for national magazines and online outlets about health, social justice, entrepreneurship, lifestyle and culture, and more. A graduate of Howard University, Arnesa has served as board member and scholarship committee chair for the Journalism & Women Symposium, an advocacy organization for women journalists.

Edited by:

Caren Weiner, MSIS

Caren Weiner, MSIS, began her personal finance journalism career in 1986. She worked as a reporter for Money magazine and co-wrote its book-length “Guide to the 1986 Tax Reform Act.” From the beginning, she immersed herself in data on mutual fund total returns and marginal tax rates.

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