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Living with leukemia can mean facing costly treatments and care. Thankfully, a variety of nonprofits, charities, and community organizations are dedicated to helping people with leukemia and their loved ones manage the financial burden of the condition.
The cost of a cancer diagnosis can lead to financial difficulties — sometimes called “financial toxicity” — or even bankruptcy. A 2018 study found that the cost of leukemia care ranged from $200,000 to $800,000 — depending on leukemia type — for the average three years after diagnosis. Even for individuals who have health insurance, affording treatment for leukemia often requires secondary and tertiary financial assistance.
Understanding the ways you can offset these costs can help you relieve some of the stress of dealing with your condition.
There are several ways to find nonprofit organizations that can help you manage the cost of your treatment and care. You can:
You can also talk to others who understand the costs associated with leukemia care. One MyLeukemiaTeam member shared, “Insurance barely pays squat, but finally after my doctor’s financial person and I did a ton of leg work, I might be in a good spot.”
Local, state, and national nonprofit programs are available to assist people with paying for leukemia care. For example:
There are disease-specific patient assistance funds, copay relief programs, and myriad other financial support services to help with the costs directly related to treatment, like coinsurance premiums, deductibles, prescription drugs, stem cell transplants, and surgeries. People with leukemia can even find financial support to help care for their pets.
A great place to start your research into financial resources may be a leukemia-specific organization such as the Leukemia & Lymphoma Society (LLS). LLS offers condition information and resource referrals, in addition to financial assistance to cover both direct and indirect leukemia care costs. LLS also has a live chat function on its website to help you find what you’re seeking.
Several nonprofit organizations maintain and regularly update lists of financial aid resources to help meet leukemia’s financial toll. They include:
Many of these organization’s resources are well-organized by cancer- and population-specific factors, such as cancer type, age (and other demographic details), and location.
Your health care team can and should be a go-to source of information for treating leukemia, and that goes beyond the actual care. Several cancer care facilities have oncology social workers or other dedicated staff members, if not whole departments, tasked with providing help with paying for cancer care. If they don’t have an answer, they can point you in the direction of someone who does.
Several nonprofit organizations also offer help with indirect health care costs that come with leukemia, as well as day-to-day living expenses.
The Leukemia & Lymphoma Society offers information and financial resources, easily searchable by your specific needs or location. The organization’s Patient Aid Program offers a $100 stipend for indirect costs that can come with living with leukemia.
The LLS is also home to the Susan Lang Pay-It-Forward Patient Travel Assistance Program, which offers $500 grants to eligible leukemia survivors to cover transportation and lodging expenses associated with leukemia treatment.
To help pay for travel and lodging expenses connected to chimeric antigen receptor (CAR) T-cell therapy treatments specifically, the LLS established the Susan Lang Pre CAR T-cell Therapy Travel Assistance Program. Through this program, people with blood cancer can apply for grants of up to $2,500.
Through the LLS’ Urgent Need Program, you can apply for a $500 grant to help with the indirect costs of living with leukemia. These include such expenses as child care, rent, and phone service. If you need to apply for another $500 grant after the first year passes, your health care provider can apply for subsequent years on your behalf.
You can also find location-specific resources. For example, the Leukemia Research Foundation Patient Grant Program offers one-time grants of up to $1,500 for people with blood cancer who live in the Illinois area. You can ask your provider about local resources that can help you find financial assistance.
The American Cancer Society serves as both an information hub and a source of financial assistance. For example, the group offers programs like Road To Recovery, which finds people reduced-cost or free transport to and from cancer care appointments. Hope Lodge is another American Cancer Society offering, helping with the expense of lodging when cancer treatment or care takes or keeps you or your loved ones away from home for periods of time.
CancerCare maintains a robust database of financial assistance resources to help people living with different types of cancer. It also provides eligible cancer survivors direct financial assistance for some of their treatment-related costs.
Be the Match is a nonprofit organization that helps people who are underinsured or who have no insurance afford stem cell transplants. Stem cell transplants can be very expensive, time-consuming, and challenging to coordinate. The organization provides financial support to help find an oncologist to conduct the procedure, a suitable donor match, and travel to appointments and clinical trials.
As prescription drug costs continue to soar, organizations like Good Days and NeedyMeds work to make sure people with leukemia can afford their drugs. These organizations can help you find diagnosis-specific assistance programs, including for leukemia. You can also find lists of state-sponsored programs that help with prescription drug costs.
The Patient Advocate Foundation provides referrals to resources for insurance and financial matters (including emergency or crisis financial assistance). The organization also offers case-management services to people with serious or chronic health conditions, like leukemia, navigate the often complicated health care industry. The foundation also provides direct financial aid via its Co-Pay Relief program, as well as some smaller disease-specific funds.
The Patient Access Network Foundation, a nonprofit dedicated to helping underinsured people afford their medical care, has a chronic lymphocytic leukemia fund with grants of $9,300 per year. Healthwell Foundation has a fund for acute myeloid leukemia, as well as for other types of blood cancers.
Asking for help can be difficult, and requesting financial assistance can feel even more uncomfortable. Feeling this way isn’t uncommon, but seeking help is a show of strength. And you’ll likely be surprised by how many people in your support network or community not only want to help, but are eager to once given a way to do so.
There are options for creating your own fundraising campaign on your own behalf or for others to do so for you. Peer-to-peer fundraising tools can help you meet the financial burden of leukemia by offering all-in-one fundraising services for a small fee that make sending, tracking, and accounting for donations as easy as possible. Several leukemia and cancer nonprofits now host individual fundraisers on their websites, often at no charge.
Community organizations in your town or state may have financial support programs, offer grants, or provide deeply discounted or free services for local residents who are undergoing leukemia treatment. Similarly, places of worship and their members may also be a source of charitable donations or fundraising support.
A leukemia diagnosis, in and of itself, comes with a steep learning curve. The financial aspects can create more confusion, but remember that knowledge is power. The more you know, the more empowered you are to make informed decisions that are best for you. This is especially true when you’re trying to get financial support for leukemia care, in part, through nonprofit sources.
Remember to be patient with yourself as you’re learning and to ask a lot of questions. Don’t be afraid to say something if you don’t understand — remember that you and your health care providers are a team, and they want to hear your questions and thoughts.
There’s no one-size-fits-all treatment approach for leukemia. Many factors specific to you, as well as the cancer, determine what regimen and treatment plan a leukemia care team will recommend. You’ll need to understand your leukemia diagnosis and the many other factors driving your treatment plan. Understanding what your specific needs are is necessary to getting a sense of the possible costs of leukemia and being able to plan ahead.
Communicate openly and often with your team of health care providers. While your leukemia care team can help predict what lies ahead for you, cancer and its treatments are hard to forecast in a precise way. You should try to plan for unforeseen events that may arise along your leukemia treatment journey.
In many cases, resources aren’t limitless and there are more people who need financial help than there is money to go around. Many of the organizations above (and in general) serve a defined group of people with leukemia and require you to meet certain eligibility requirements. To save yourself time, effort, and frustration, determine whether or not you meet these criteria before embarking on the application process.
If you find a nonprofit that isn't currently offering financial assistance for people with leukemia, don't lose hope. Nonprofit websites are continually updated as new funding becomes available. Keep checking for announcements, or sign up to receive notifications about new enrollment.
MyLeukemiaTeam is the social network for people with leukemia and their loved ones. Here, more than 10,000 members who understand life with leukemia come together to share support, advice, and stories from their daily lives.
Do you have tips for affording leukemia treatment? Share your experiences and thoughts in the comments below or by posting on MyLeukemiaTeam.
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Richard LoCicero, M.D. has a private practice specializing in hematology and medical oncology at the Longstreet Clinic Cancer Center, in Gainesville, Georgia. Review provided by VeriMed Healthcare Network. Learn more about him here.
Nyaka Mwanza has worked with large global health nonprofits focused on improving health outcomes for women and children. Learn more about her here.
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