As if the disease and its treatment weren’t bad enough, figuring out how to pay for it all adds to the stress — and distress — of cancer. In fact, 40% of patients say the financial burden of the disease is significant or even catastrophic. And, as many as 50% of patients and their families are distressed over that financial burden. As a result of the high cost of treatment, nearly a third of all patients rely on family and friends to help cover expenses. And many are left with substantial debt after treatment has ended. It’s no wonder that bankruptcy rates for cancer patients are nearly three times as high as those without.
With or without insurance, the cash outlays for medical care, not to mention transportation, childcare and supportive services, can be extensive. Add to that the likelihood of missed days at work and reduced income, and the financial drain of a cancer diagnosis feels immense. Increasingly, the medical community is referring to this as the “financial toxicity” of care. And, like the toxicity we experience when we have had treatment that is hard on our bodies, sometimes financial toxicity gets in the way of health and quality of life.
I Can’t Afford Cancer
For most patients, the financial woes begin at the time of diagnosis. Questions such as “What will my insurance cover?” and “Do I need pre-authorization for surgery?” can fluster anyone under the best circumstances. But, when we’re dealing with diagnosis anxiety, and the battery of decisions we need to make in a short period of time, they can be overwhelming. And the cost implications of care decisions are very real. Surgery can be tens of thousands of dollars. Chemo and radiation costs thousands of dollars a treatment, and it’s never just one. While insurance covers some of the expense, the co-pays and deductibles can be quite high, averaging $5,000 a year. And some new immunotherapy and targeted treatments might not be covered at all. And these treatments, including immunotherapies and targeted drugs, can run in to the hundreds of thousands of dollars a year.
Ideally, we would make care decisions only on the basis of what’s the best way to get healthy. But in real life, questions about coverage and costs play a role. Does this doctor/hospital take my insurance? Can I afford the co-pays? How will I pay for prescription medicine? Many patients alter their care plans to reduce costs. Sometimes this means asking doctors for less expensive medicines. Other times it means not filling prescriptions or taking less than the prescribed amount of medication. It could even mean skipping treatment or tests. Many patients also cut back on leisure activities and fun when trying to manage cancer expenses. And it is not unusual for patients to burn through their savings, borrow money, even cut back on basics like food and clothing.
What Quality of Life?
Not surprisingly, financial distress is associated with overall emotional distress, particularly depression and anxiety. The greater the concerns about paying for treatment, the higher the levels of overall distress. Unfortunately, the spiral doesn’t stop there. More emotional distress tends to increase a patient’s symptoms, interfere with adherence to treatment plans, and lead to worse outcomes. (In fact, research has shown that breaking the stress cycle can improve overall health.)
Unfortunately, cultural taboos often prevent us from admitting we can’t afford something, even if it is lifesaving treatment. And most of us aren’t comfortable discussing emotional issues either, so it’s a double whammy.
There is help. Many hospitals have financial assistance programs and social workers who can access internal and external resources. Pharmaceutical companies offer rebates and patient-assistance programs. Numerous private organizations offer a range of financial and “supportive” services to ease the burden of cancer. Everything is available if you know where to look. Cash grants. Rent assistance. Child care costs. Free transportation and lodging. House cleaning services and more. Even participating in a clinical trial can reduce the cost of care. But, most cancer patients — and providers — don’t know where to find assistance.
So where do you turn for help?
Financial Resources
Check with your providers:
- Ask your doctor about social and financial services that may be available through your hospital or cancer center. She might not know the answer, but probably can point you in the right direction. Or she can track down someone who knows. Be persistent.
- Ask the nurses in your treatment facility about social services and support. Nurses often understand patient needs and resources, and may have more time for a conversation about your needs.
Tap into online resources for general cancer financial literacy, planning and support:
- CancerCare.org offers counseling, education and financial assistance. It also has a directory of financial and practical help offerings. The database covers everything from meal delivery, wigs and lodging to fertility, medical supplies and genetic testing.
- Cure Magazine Financial Assistance Guide provides information about financial toxicity and a list of many financial support organizations.
- Triage Cancer offers an extensive guide to financial assistance resources, including everything from prescriptions, fertility preservation, child care, home cleaning, general living and even dental care. This site also has information to help you understand your rights at work as a cancer patient or caregiver.
- Gilda’s Club/Cancer Support Network offers help accessing pharmaceutical patient assistance programs. Working with AirBnB, it also provides free lodging for patients and caregivers.
- Family Reach provides financial education, navigation and planning, as well as direct financial assistance.
- Patient Advocate Foundation offers financial guidance as well as financial aid, co-pay relief and scholarship programs.
Access specialty organizations for support with specific types of cancer or specific types of financial need, such as:
- The Leukemia and Lymphoma Society offers help with medical expenses and transportation, including copay assistance.
- Share Cancer Support helps match ovarian and breast cancer patients to clinical trials. The site also offers access to a host of other financial resources. (Check with the organization that supports your specific cancer.)
- Medical Assistance Tool helps patients and caregivers learn about and access pharmaceutical patient assistance programs.
- Patient Travel provides charitable transportation to medical treatment.
Getting What You Need
And remember, it’s also important to get help for your emotional distress. If you are worried about paying for your care, and that concern is interfering with your ability to sleep, carry on daily life and focus on getting well, it’s time to talk to someone who can help. Many of the same resources, including your medical facility, offer social services and emotional support. Other great options include Cancer Hope Network and Imerman Angels. Don’t let the double whammy interfere with your recovery.