When I sat through many many too many chemo sessions, I spoke with the patients in the infusion center. Cancer provokes many things. One of the most interesting rewards of having cancer is the immediate intimacy that develops between patients. These patients and their families were kindred spirits. They inspired me. They changed my purpose and my passion.
Most of the patients were profoundly worried about their financial futures at the same time they were coping with their fears and uncertainties. Their anxiety was strong and palpable.
I vowed to make a difference for these people and for those who will follow with similar stories.
The strain of being in a financial crisis due to the insurmountable costs of cancer is tremendous and truly gets in the way of the healing process. In my personal and professional opinion, addressing financial concerns should be a top priority to relieve the patient of undue stress. A person enduring the trauma of cancer should not be expected to deal with these issues. In my ideal world, someone from a patient’s support team would immediately be designated as the responsible party to do the research and evaluation on behalf of the patient. If no such individual exists, then the patient should contact the social worker or financial advisor at the treating hospital to “partner” with the patient in resolving these concerns.
It is also my experience, personally and professionally, that medical providers, including the treatment hospital, will negotiate with the patient (or his or her representative) to cover the costs of treatment. Before I knew this invaluable fact, I incurred extraordinary expenses for “shooting myself” with drugs at home to restore my low white cell. My fancy PPO would not cover the costs unless I returned to Stanford every 12 hours so that they could administer the shot. This was untenable. They also would not cover the expense if I went to a nearby local hospital or had a neighbor oncologist give me the shot. Although I never dreamed that I could “shoot up”, I did. And I never asked about the costs. I went wild when I received the bill. I then negotiated with Stanford. It worked. I was fortunate to own my home and could take out a second mortgage to pay for this expense but I deeply connected with the many people who did not have that asset. Would they die if they could not afford the treatment? That was unacceptable to me.
A few months and many sleepless nights later, thinking about the inexplicable absurdity of cancer costs, I contacted the Patient Advocacy Foundation and shared my experience. The generous young man (I have always loved the “generosity of strangers” in the cancer world) said to me that, had I called during this debacle, they would have found the money to handle the medication. This says it all.
Nancy’s List was originally to be a list of available financial resources. It was my response to these powerful conversations between strangers. As Nancy’s List evolved through my attempts to meet the needs of cancer patients, I return to my focus on finding the money and making financial assistance available to all of us who are overwhelmed by this reality. I hope I am helpful.
Nancy’s List is a non-profit 501 (c) (3) foundation. We are not a funding resource and do not have funds to distribute. We are rather a comprehensive source of information about what is available for those living with cancer.
Understanding what costs to expect is an important first step in gaining a sense of control. It is difficult to form a plan for managing costs until you understand what to expect.
Potential expenses that you may want to ask your health care team about are:
- Clinical Trials
- Home Health Care and Home Hospice Care
- Rehabilitation Care
- Private Duty, Long Term and Custodial Care
- Psychotherapy & Counseling
- Family and Living
Keep in mind that options such as cashing in retirement accounts or life insurance policies should be considered very carefully. It is recommended that you seek the advice of a financial professional or advisor when making these decisions. However, for some people who have accrued substantial debt through the course of treatment, these options can provide welcome relief.
Coping with the cost of care will look different for each person. Sometimes declaring bankruptcy is the best option. Sometimes individuals can negotiate with creditors to either decrease the amount owed or lengthen the period of the loan. A good financial advisor can help you identify options if you find you are accruing substantial medical debt.
Essays from our authors