Published on April 28, 2021
Financial Resources and Advice for CLL Patients
The first question after a cancer diagnosis is often, “Am I going to die?” But the next question is likely to be, “How am I going to pay for this?” If a chronic lymphocytic leukemia (CLL) diagnosis has you worrying about your finances as much as your health, you are not alone. Fortunately, help is available.
Dan Sherman, a financial navigator and founder of The NaVectis Group, recently spoke with Patient Power co-founder Andrew Schorr about financial resources for patients with CLL, including patient assistance programs, pharmaceutical assistance programs, and government safety nets. But first, they discussed what is often the biggest hurdle to accessing financial help: a patient’s reluctance to admit they need it.
Don’t Be Embarrassed to Ask for Help
“Many of us who are diagnosed with CLL, we've taken care of ourselves our whole life, and we're not used to asking for help,” Schorr explained. “We're a little embarrassed about doing it.” The truth is, very few people can afford the cost of cancer treatment, and not asking for assistance can lead to years of financial stress.
A 2019 report published by the Centers for Disease Control and Prevention (CDC) found that 25% of cancer survivors in the United States struggle to pay their medical bills and one in three people worry about medical costs. More than 42% of patients exhaust their entire life savings within two years of a cancer diagnosis, according to a study published in The American Journal of Medicine. Cancer treatment is expensive, and the financial burden can cause anxiety for patients at a time when they need to focus on their health.
“We really need to start understanding here that financial toxicity, even though embarrassing, is something that really needs to be treated,” Sherman said. “It's something that we in the healthcare setting need to understand and take more seriously, that this is a problem that we have to be addressing.”
Sherman, an expert in oncology financial navigation, shared his go-to strategies for CLL patients.
Patient Assistance Programs
Patient assistance programs are independent organizations that provide financial support to cancer patients. If you have an expensive drug copay, for example, a patient assistance program may be able to help with your out-of-pocket costs. Benefits and requirements vary by program. Here are a few examples:
- Patient Access Network (PAN) Foundation. Founded in 2004, the PAN Foundation provides funds for CLL medications, copays, and other out-of-pocket medical expenses. Their online eligibility finder can quickly determine if you qualify for assistance and provide additional resources.
- HealthWell Foundation. The HealthWell Foundation helps with prescription copays, health insurance premiums, and more. They are a non-profit organization dedicated to reducing financial barriers for under-insured patients with chronic or life-altering diseases, like CLL.
- Leukemia and Lymphoma Society (LLS). LLS has been supporting blood cancer patients since 1949. In addition to funding research and education services, they provide financial support to eligible patients. To apply, call (877) 557-2672 to speak with an intake specialist.
- Patient Advocate Foundation. The Patient Advocate Foundation provides small grants to patients who meet financial and medical criteria. They do not currently have open funds for patients with CLL, but they update their website regularly as new funds become available.
Pharmaceutical Assistance Programs
Another source of financial assistance for CLL treatment costs comes directly from pharmaceutical companies. In most cases, the patient completes an application, their doctor verifies the information, and then the patient submits it to the drug company for approval. Benefits and eligibility vary.
“If I've gone through the entire appeals process and I'm at a dead-end, I certainly would reach out to the pharmaceutical company who makes the product and request that they provide the product for free to the patient,” Sherman said. “That is successful [most of the time].”
Other Financial Resources for Patients With CLL
In addition to patient assistance programs and pharmaceutical assistance programs, there are government safety net programs to help with prescription drug coverage.
- Medicare Part D Low-Income Subsidy: Patients who qualify for the Medicare Part D low-income subsidy can apply for “Extra Help” through the Social Security Administration (SSA) or a local Medicaid office.
- State Pharmaceutical Assistance Programs: Many states offer State Pharmaceutical Assistance Programs to help residents pay for prescription drugs. Each program works differently. Contact your state health department for more information.
An Oncology Financial Navigator Can Help
Beyond the resources listed here, there are other sources of financial assistance available for patients with CLL. Since each program has its own eligibility requirements and unique application process, it can be overwhelming to track down financial resources between chemotherapy appointments, scans, and infusions. Sherman recommends calling in the experts to help with the legwork.
“Let me give myself as an example,” Sherman said. “I know very little about computers and software, but I have a brother who is an IT guru. So, when I have a computer problem, I reach out to him and say, ‘Hey, I need assistance with this.’ I don't have the expectation that I'm an expert in this field. Or, if I have a cancer diagnosis, I'm not going to go to my mechanic to request assistance. I'm not going to try to figure it out on my own. I'm going to go to my medical oncologist to get expert advice.”
To learn more about CLL financial resources and how a financial navigator can help, watch: How Can CLL Patients Access Help and Avoid Financial Barriers?.
- The American Journal of Medicine. “Death or Debt? National Estimates of Financial Toxicity in Persons with Newly-Diagnosed Cancer.”
- Centers for Disease Control and Prevention. “Annual Out-of-Pocket Expenditures and Financial Hardship Among Cancer Survivors Aged 18–64 Years — United States, 2011–2016.”
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