Many patients with myeloproliferative neoplasms (MPN) do not know they qualify for financial assistance, despite high costs and strict insurance coverage. A patient with myelofibrosis described paying $19,000 monthly for medication, noting that even co-pays reach thousands. This individual did not initially believe they would qualify for help, a sentiment shared by many facing cancer care expenses. Pride and embarrassment often prevent people from asking if assistance is available.
Experts indicate that the primary barrier to patients receiving financial help is not meeting eligibility requirements, but simply being unaware that help exists. Susan Marchal, an LCSW who supports patients at NY Presbyterian Hospital, stated that she assumes everyone needs help. She noted that patients frequently accept offered treatments without questioning the costs. The sticker shock of astronomical prices often arrives later, leading people to assume their doctors are too busy to address financial burdens.
Patients should ask their care team if a social worker is available. If not, they should look for a case manager, care coordinator, or patient advocate within their health system. These individuals are experienced in troubleshooting healthcare expenses. Marchal suggested that patients in and out of a clinic regularly may be struggling unnecessarily. She emphasized that people often feel uncomfortable asking for help, despite the resources available.
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When myelofibrosis is accompanied by anemia, managing finances becomes significantly harder. Extreme fatigue or brain fog caused by medications can reduce a patient’s ability to work or lead to disability. Marchal described this as a difficult combination where income usually lowers and expenses go up. The National Cancer Institute has linked financial toxicity associated with cancer to patients not taking medications as directed to save money, as well as significant debt and bankruptcy.
At NY Presbyterian/Weill Cornell, two specific roles are available to help. A pharmacy liaison works directly with care teams to secure the lowest co-pays for prescribed drugs. They can explore manufacturer assistance programs or suggest similar medications with lower costs. A financial counselor works with social workers to understand a patient’s situation. They provide knowledge about long-term grants, including help with travel costs and temporary housing for procedures like stem cell transplants.
Financial stress often adds to the physical symptoms of the disease. The exhaustion required to handle insurance systems can further complicate health management. Marchal advises patients to bring piles of insurance letters to their appointments. She helps them sort through explanations of benefits and calls insurers on their behalf. The goal is to identify financial needs early, before they become overwhelming.
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