Myeloproliferative neoplasms (MPNs) are chronic blood conditions that usually require ongoing monitoring and treatment. The costs of a long-term need for medical services like blood tests, bone marrow biopsies, transfusions, outpatient visits, and medications could pose a substantial financial burden, especially for someone without insurance.

Health insurance can help cover the costs of treatment, but for people with MPNs who don’t have insurance, there are different strategies, programs, and resources to help them. Programs from nonprofit organizations and drug manufacturers help reduce the cost of medications, and hospital-based social workers and financial counselors help people navigate financial assistance resources.

Many resources help cover both direct and indirect costs of treatment for different types of myeloproliferative disorders like essential thrombocythemia, polycythemia vera, and myelofibrosis. This article discusses different ways to get MPN treatment if you’re uninsured.

Enroll in a Health Insurance Plan

If you don't have health insurance, it’s important to consider getting some when planning your finances for MPN treatment. Although health insurance plan costs such as premiums and deductibles may seem expensive, health care providers and hospitals work with insurance companies to make coverage more affordable. In the long run, paying for a health insurance plan may cost less than the out-of-pocket costs of treating MPNs without insurance.

There are several public and private health insurance programs to consider.

Public Insurance Programs

Public health insurance programs include the following:

• Medicaid — For low-income individuals, families, and children
• Medicare — For adults over 65 and individuals who receive Social Security Administration disability benefits
• Social Security Administration disability benefits (through Medicare) — For those who have worked jobs that paid into Social Security and cannot currently work due to MPNs or treatment-related side effects
• Children’s Health Insurance Plan (CHIP) — For children and families that make too much money to be on Medicaid

Private Insurance Programs

If you do not qualify for a public health insurance program, there are several options for private health insurance:

• If you or your spouse are employed, you may qualify for health insurance through your employer.
• If you have recently lost your job, ask your former employer’s human resources department if you qualify for COBRA, a program that allows one to continue receiving health insurance benefits after their termination date.
• If you’re a student, check if your school or university offers health insurance plans.
• Veterans health care benefits are available to you if you served in the military, naval, or air force. Apply at the website here.
• You may buy health insurance through your state’s marketplace or exchange at HealthCare.gov. You must enroll during the Open Enrollment period, which is usually around November to Jan. 15.

Consult a Social Worker or Patient Financial Counselor

If getting health insurance is not possible for you, your next step in managing MPN treatment and costs uninsured should be consulting an oncology or hematology social worker. These providers are an invaluable resource when navigating MPN care without insurance.

Social workers and financial counselors help connect you with financial aid programs you may be eligible for and offer tips for saving money on medical bills. They will also know of local city- and county-based medical aid options for those who are uninsured and with a low income. Most hospitals and clinics have social workers and financial counselors on staff. If you have trouble locating a social worker, CancerCare offers oncology social workers that you can contact at 800-813-4673.

Affording Medications Without Insurance

Different programs can help you afford MPN medications (chemotherapy agents, kinase inhibitors, and interferons) with and without insurance.

Patient Assistance Programs

Patient, or pharmaceutical, assistance programs are drug discount programs offered directly by drug manufacturers to help reduce the cost of medications. To find these programs, do a web search of the name of your prescribed medication plus “patient assistance program,” or review this chart with popular anticancer medications by Triage Cancer.

Some patient assistance programs for MPN include:

• IncyteCARES for Jakafi Patient Assistance Program — Helps uninsured people with MPNs afford Jakafi (ruxolitinib), an MPN medication
• Genentech Patient Foundation — Helps uninsured people afford Genentech medications like Pegasys (peginterferon alfa-2a) for MPNs

Some resources help connect people with relevant financial assistance programs. One example is NeedyMeds, a nonprofit organization that helps people find assistance programs by drug or diagnosis. PhRMA’s Medicine Assistance Tool matches people with resources for affording medications.

Tips for Saving Money on Medications

In addition to drug discount programs, there are other ways to lower the costs of your medications. Here are some ideas:

• Ask your doctor if there is a less expensive form of your prescribed medication (for example, sometimes whether a medication is in pill or infusion form will affect its cost).
• Ask if there are any less expensive generic alternatives for your prescribed medications.
• Ask if your doctor has samples of your medications that they could give to you.
• Shop around. Compare prices across different pharmacies by searching online or calling the pharmacy directly. Websites like GoodRx offer drug discounts and also help you compare prices across retailers.
• Check online pharmacies, as they may offer lower prices. Make sure to check their legitimacy by checking for a National Association of Boards of Pharmacy's Verified Internet Pharmacy Practice Sites (VIPPS) Seal before purchasing any products from them.

Consider a Clinical Trial

Whether or not you have insurance, clinical trials could be an option for accessing free or low-cost treatments for myeloproliferative disorders and types of leukemia such as chronic myeloid leukemia. Clinical trials are research studies that examine the efficacy of new drugs and procedures.

Ask your doctor if they know of any clinical trials that are appropriate for you. The Lazarex Cancer Foundation can help connect you with clinical trials, and they offer financial assistance for trial participation.

Affording Hospital Bills Without Insurance

MPN treatment might require outpatient hospital visits for services like phlebotomy for excess red blood cells, leukapheresis for excess white blood cells, or transfusions for anemia. Sometimes, people with MPNs have to undergo surgery to remove an enlarged spleen.

If you are uninsured and cannot afford to pay a medical bill, try meeting in person with someone from the billing department where you received treatment. Explain your situation and ask if they can offer financial help, including options like:

• Payment plans, which could allow you to pay the cost of a bill over a period of time
• Funding for under- or uninsured people
• Charity care
• Discounts that are similar to those provided through Medicare

Many hospitals and cancer clinics offer these financial resources, but you may need to ask about them. If your hospital does not offer you any financial assistance, there may be another hospital nearby that can help.

Some organizations offer help to people with low incomes to afford hospital bills. Hospitals that are Hill-Burton Facilities are obligated to help provide free or low-cost medical services to people who cannot afford them. Check this list to find a Hill-Burton hospital near you.

Other Resources for MPN Treatment Without Insurance

Many financial aid resources for blood cancers and other types of cancers require a person to have insurance to be eligible for aid. If you’re uninsured, the Leukemia & Lymphoma Society has a general Patient Aid Program for people with blood cancers like MPN who need help paying for treatment.

Stem Cell Transplantation

Stem cell transplantation is a procedure that replaces cancerous bone marrow cells with healthy cells. It is an expensive but sometimes promising treatment option for MPNs. The Leukemia & Lymphoma Society offers different strategies for reducing the costs of bone marrow transplants. For example, they suggest working directly with health care providers to negotiate medical fees in times of financial hardship.

Nonprofit organizations like the National Foundation for Transplants and the Blood and Marrow Transplant Information Network provide support for people in need of transplants.

Indirect Expenses

In addition to financial resources for the medical expenses of MPNs, there are resources to help with nonmedical expenses, like those for transportation, housing, and childcare while someone is undergoing treatment. Explore available resources on the Cancer Financial Assistance Coalition website. The American Cancer Society also offers a list of resources to help with cancer-related treatment expenses.

Resources like Triage Cancer, the National Cancer Institute, and the MPN Research Foundation provide support for living with and treating myeloproliferative disorders.

Find Your Team Today

Talking to other people who understand what you are going through can be a great source of support. Other people with MPNs may know of tips and financial resources for getting treatment while uninsured.

MyMPNTeam is the social network for people with MPNs. On MyMPNTeam, more than 1,800 members come together to ask questions, give advice, and share their stories with others who understand life with MPNs.

Are you uninsured and living with an MPN? Have you had success getting help with your medical care costs? Share your experience in the comments below, or start a conversation by posting on your Activities page.