Living with a rare or chronic condition often means more than navigating symptoms and appointments—too often, it means confronting a mountain of medical bills. From specialty medications to frequent appointments, the price of specialized care can quickly become overwhelming. For many families, it’s not just about affording treatment, but about choosing between health and financial stability.
While the financial burden of specialty care is real, there are resources designed to help. A wide range of patient assistance programs exist to ease the cost of medications, therapies, travel and more. This blog post will walk you through the types of financial assistance available and how to get started, so you can focus more on care and less on cost.
Understanding the cost of specialty care
If you have a rare or chronic condition, you understand that the need for ongoing, specialized treatment is a non-negotiable part of life. But this kind of care often comes at a steep price, both financially and emotionally. Specialty care is expensive for several reasons, including:
- Specialized medicines: Specialty drugs are often not available in a typical pharmacy. These medications can be biologics or gene therapies, which are complex to develop and distribute. Some cost thousands, or even hundreds of thousands, of dollars each year.
- Advanced diagnostic tests or procedures: Getting an accurate diagnosis can require extensive genetic testing, imaging and lab work.
- Ongoing therapies and frequent specialist visits: The frequency and variety of appointments can quickly add up, even for patients with insurance.
- Travel and lodging for out-of-area treatment: Many patients must travel to see experts in their specific condition, especially if they live in rural or underserved areas. Costs related to transportation, lodging and meals during medical visits are often not covered by insurance.
- Lost income due to caregiving or missed work: Chronic illnesses don’t follow a typical 9-to-5 schedule. Patients miss work due to flare-ups, fatigue or appointments. Caregivers also often cut back hours or leave jobs entirely to provide support, leading to reduced household income.
Approximately 14 million people in the U.S. owe more than $1,000 in medical debt, and about 3 million people owe more than $10,000. High specialty care costs often force families to choose between treatment and essentials like rent or food. Medical debt can build quickly, and navigating insurance adds emotional strain. For many, the stress leads to delayed or skipped care, which can worsen health and raise future costs.
Types of patient assistance programs for specialty care
While the cost of care can feel overwhelming, there are a variety of patient assistance programs designed to help ease the financial burden. These resources come from nonprofit organizations, pharmaceutical companies, government programs and even hospitals themselves. Knowing what’s available—and where to look—can make a meaningful difference in accessing and affording the care you need.
Nonprofit organizations
Several nonprofit organizations and advocacy groups offer financial assistance for copays, travel and treatment costs. For example, the PAN Foundation has provided more than $4.5 billion in financial assistance to more than 1.3 million people over the past 20 years. Grants provided by the PAN Foundation cover everything from transportation costs to get to and from appointments to health insurance premiums to reimbursement for co-pays. Triage Cancer, a nonprofit that provides free education on the issues individuals diagnosed with cancer may face, also provides a toolkit on navigating finances after cancer. Other organizations, such as the National Organization for Rare Disorders (NORD), HealthWell Foundation and Patient Advocate Foundation also offer patient assistance programs.
Pharmaceutical companies
Many pharmaceutical companies, such as Merck, Amgen, Novo Nordisk and Novartis, offer patient assistance programs to make medications more accessible and affordable for patients who cannot afford them.
If you are prescribed a medication, ask your doctor or pharmacist if there is a discount card available online or financial support from the manufacturer. You can also utilize the Medicine Assistance Tool, a search engine designed to help connect individuals to resources for different medications.
Government programs
Government-funded programs can be a source of financial relief, but these programs are often underutilized, either due to complex eligibility requirements or lack of awareness. However, they can provide substantial support with medical costs, prescriptions and day-to-day needs.
- Medicaid and Medicaid waivers: Medicaid is a state and federally funded program that provides health coverage for individuals with low income, as well as those with disabilities or chronic health conditions. Many states also offer Medicaid waivers that cover additional services like in-home care, transportation and support for long-term complex needs, all of which are services that might not be covered under traditional Medicaid.
- Medicare Extra Help: For those on Medicare, the Extra Help program helps with prescription drug costs. It can help reduce premiums, deductibles and co-pays under Medicare Part D, making essential medications more affordable for eligible individuals with limited income and resources.
Hospital financial assistance
Nonprofit hospitals are required to offer financial assistance programs for patients who cannot afford their bills. These programs are often referred to as “charity care.” While not legally obligated to offer charity care, some for-profit hospitals may also offer financial assistance for patients who can’t afford to pay or may allow you to set up payment plans to pay smaller monthly amounts. If you have received care in a hospital, call the billing department to inquire about patient assistance programs.
Taking the first step toward financial relief
Navigating the financial side of a rare or chronic condition can feel just as overwhelming as managing the condition itself, but help is available. Whether it’s support from nonprofits, assistance from medication manufacturers, aid through government programs or help from hospital charity programs, there are resources designed to ease the burden and make care more accessible.
The process may take some time and research, but you don’t have to do it alone. Start by talking to your doctors, using online tools and reaching out to the organizations mentioned above. Every bit of assistance—no matter how small—can make a meaningful difference, helping you worry less about money and focus more on what truly matters: your health and well-being.
One thing that never costs money? MediFind’s “Find a Doctor” tool. Find the right specialist for your condition using our “Find a Doctor” tool—search by condition or specialty and location. Try it here.
