The cost of cancer care is a big concern for many patients. This is for different reasons, including the high cost of care, complex health insurance rules, and emotional hurdles in talking about financial issues with others. This video offers guidance on how patients can navigate these challenges.
This video offers perspectives on this topic from both survivors and health care professionals. It is being offered through a four-part “Navigating Challenges” series for people newly diagnosed with cancer facing real-world barriers to high quality cancer care. This ASCO patient education video series was made possible by a grant from the LIVESTRONG Foundation to the Conquer Cancer Foundation.
Other Videos in This Series
Navigating Challenges: Talking with Your Cancer Care Team
Navigating Challenges: Making Decisions about Your Cancer Treatment
Navigating Challenges: Finding Emotional Support after a Cancer Diagnosis
Booklet: Managing the Cost of Cancer Care (PDF, English)
Booklet: Manejo del costo económico del tratamiento en paciente con cancer (PDF; Espanol)
When the Doctor Says Cancer
ASCO® Lineagotica: Doctor-Approved Patient Information
Navigating Challenges: Managing the Cost of Your Cancer Care
Lidia Schapira, MD, FASCO: Being diagnosed with cancer is hard enough. You need to have a bit of a plan to figure out how you’re going to bear the costs, plan for the timing perhaps, modify your budget so that receiving the cancer treatment doesn’t also complicate your own life or your family’s life. Patients tend to worry about a whole lot of things when they’re diagnosed with cancer. And sometimes worrying about how they’re going to pay for cancer treatment is one of those worries.
Donna: I think it’s a conversation that needs to happen every step of the way with each piece of treatment, so that you’re not blindsided in the end with cost.
Paul Sabbatini, MD: It’s unfair to ask someone to worry about it later because these are real issues and patients have families and they have dependents and they have – there are some times the patient is a caregiver themselves. And they worry about these financial issues. But I can just reassure you that most of the time there is a way forward, whether it’s getting the care covered by an alternate source, whether it’s applying for a different funding source, whether it’s applying for a different type of insurance, whether it’s for using other coverage. There are generally ways forward and the drugs can be given and the care can be administered.
Dr. Schapira: I think for many people it’s important to even have this conversation up front at the first visit and tell the doctor what you’re worried about, especially if you’ve just lost a job or if you are underinsured or uninsured or if your insurance is changing and you’re not sure how much your insurance will cover. I think it’s just important to say it just in very simple terms doctor, I’m worried.
Donna: I’m worried that cancer treatment may not be something my family or I can afford the point would be to ask questions up front because it is staggeringly expensive and it’s huge in the healing process that weight hanging on you.
Dr. Sabbatini: I think what’s important is that cancer care is generally provided by a team. And I think you should feel comfortable speaking to any team member about any issue, realizing that you may be referred to someone else, whether it’s someone in the office or whether it’s someone in the community agency, but there is help available.
Donna: My initial chemotherapy plan was to do dose dense chemotherapy. When I went to the chemotherapy suite to get the dose dense chemo is when I found out that it was 500 and some odd dollars just for the first treatment. That wasn’t something that I could afford. So with the blessing of my doctor we talked about it and we completely changed the chemotherapy treatment that I was going to have based on the cost. It was spread out longer than initially it would have been because it was cheaper that way.
And that’s the way I could afford it.
Dr. Schapira: I’ve always been a proponent of open and frank communication between patients and their clinicians, especially with their oncologist. I think it’s really important or somebody to ask their physician when they’re diagnosed if there’s somebody on the team who can give them some financial advice and just help them plan.
Magda: when you have insurance, work covers a part but you have to keep working so that you don’t lose the insurance. So I had to work the hours that they required so that I wouldn’t lose my insurance. So that was another stress factor. Whether I liked it or not, if I felt bad, I had to keep going on. Because I said, “Wow! They’ll take away the insurance, what will I do? I’ll be out on the street.”
Dr. Schapira: It’s really important to be able to plan for cancer treatment. And that includes not only factoring the costs of the treatment itself but also perhaps the time lost from work, how it’s going to impact other family members who may need to do more caregiving. Many of the other costs associated with setting aside a large chunk of your time in order to receive cancer treatment.
Claudean: I expected to pay a co-fee every time, a copayment every time I go to the specialist which is the oncologist? They can add up. About transportation and parking, you know, what does that look like? If I’m doing my treatments at a hospital that’s 20 miles away you know it’s a concern, transportation, car, parking, the whole thing. What if I’m delayed and I’m there four or five hours? Do I have the money for that?
So a lot of these incidental costs you know they can add up and they can be a concern.
Dr. Sabbatini: I think these are really important issues about the costs in addition to the cancer care, things that come up, whether it’s missing time from work, whether it’s dealing with childcare, whether it’s dealing with transportation to the office. And, again, there are many, many programs to assist with this. I think most people can find help in this regard.
Magda: I think that everything depends on the situation you find yourself in when you are diagnosed with cancer. In my case, well, at that time, I had medical insurance. When you have medical insurance, they tell you “The insurance will cover it. Don’t worry. You concentrate on your health and your recovery. Everything is going to be fine,” they say. I mean, the deductibles that are going to come, “That... forget about that,” they tell you, right? So I said to them, “But how much is it going to cost?” So they don’t tell you an exact amount.
Um, only then the deductibles start arriving at your house
The amounts were 2,000.00; 1,500.00; 700.00; each bill that came to my house. So I, well, I was desperate, I was stressed out, “How am I going to pay for all this?”.
Claudean: I was very fortunate to be covered by my husband’s insurance. Most of the costs were taken care of, except those unforeseen costs that I had to get additional medicine for, which was quite costly at times, depending where I was in the process. And so most of my financial concern in the process having lost my job at the same time and what does that look like going through the chemo process, at first it was a worry, but because I was on the company’s payroll up until about a year that was very helpful for me.
Dr. Schapira: In this day and age, I think a patient has to advocate for him or herself. First, you need to be knowledgeable about what kind of insurance you have, what it will cover, and what it will not cover. Perhaps you don’t know. So, making a phone call to the insurance company and trying to find somebody within the company to help you navigate the process is important.
Dr. Sabbatini: I think that insurance coverage is complicated. It’s complicated for us as providers. It’s complicated for patients. I think that the first response for a patient when they believe something is not covered is to discuss it with their provider, discuss it with the team. In many cases, there are ways forward to get the care that’s needed, even if at first it seems it’s not covered.
Dr. Schapira: Keep a good folder where you have all of the information, where you write down the information you receive. Make sure that you think maybe two, three steps ahead and have the proper authorization for visits. Make sure that you know, for instance, if you need a certain test, that you’re going to have it done at a facility that is covered by your insurance. So, the first message is really try to think about this cleverly, clearly, strategically.
There usually is some program or some form of help that could provide access and could provide a direct referral to a major cancer center where almost anybody will be seen. I have not heard of people being turned away because of issues of insurance. So, it may require perhaps a little bit of effort, a little bit of advocacy, but at the end of the day, I hope that anybody who has a real problem and needs to be seen can have access to good care.
Dr. Sabbatini: People often come to their cancer diagnosis in many different situations. They might have just changed a job. They might have just started arranging a new childcare opportunity. They might have just placed their children in different schools. There are many, many issues. They have many different financial situations. And I think the message is that patients need to be able to ask for help. And I think most often when they ask for help, there’s help available.
Virginia: … all you want to do is... get out the situation. After that is when you start thinking about the expenses. After the operation, that’s when it comes to mind... What am I going to do? How am I going to pay? How am I going to pay the medicines? ...
Well, like I said, I got financial help, friends who gave me money, who gave, I don’t know, I went with friends from Peru They took up a collection and that...
that helped me... when they helped me, they helped me a lot, because I didn’t have... no... I didn’t have money. From where? Because I was out of work. I was more focused on my health than on money
Donna: So those costs added up and it wasn’t until everything that was done that I sat down and added it all up and realized what a hole I was in from it. But I did again through the oncologist therapist she pointed me to the direction of some financial resources that were available out there.
Dr. Schapira: For people who are really worried about how they’re going to manage the cost of cancer care or who may actually need financial assistance, I think it’s important to remember that there are organizations that provide help. They provide help and they provide financial assistance. These are not for-profit organizations, philanthropic organizations, and even disease-specific societies that have funds that can help patients manage the cost of cancer care.
[Closing and Credits]
Lineagotica®: Doctor-Approved Patient Information from ASCO®
ASCO's patient education programs are supported by Conquer Cancer Foundation of the American Society of Clinical Oncology. ConquerCancerFoundation.org
The opinions expressed in the video do not necessarily reflect the views of ASCO or the Conquer Cancer Foundation.
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