Emerging pharmacologic therapies used for the treatment of oncology are being developed and approved at an accelerated rate.
“In 2015, the US Food and Drug Administration added 15 new drugs and biologic therapies to its list of more than 180 approved anticancer agents and expanded use for 12 previously approved treatments.”1
While these new therapies are changing the game in terms of favorable patient outcomes, they come at a great financial expense to patients and their families.
In a survey of patients with cancers of the breast, colon, lung, and prostate, 20% and 4% of the 1,767 respondents spent more than $10,000 and more than $50,000, respectively, on out-of-pocket treatment and medical care expenses. Overall, 19% of patients and 39% of individuals with a yearly income of less than $40,000 reported the financial costs of treating their cancer had caused a “large amount of distress.”2
In addition, medication adherence issues can arise, because of this financial distress, which can lead to less than favorable outcomes and even increased mortality when therapies are discontinued early.3
With the rising costs associated with these new therapies and the passing of more expensive premiums, deductibles, and copays to patients, some people diagnosed with cancer will need to know how to deal with these financial hardships. One area that has grown from the economics of cancer care has been financial navigation. Oncology financial navigators help patients to understand their medical insurance as well as what other resources are available to help pay for care.
While Clara Lambert is herself an oncology financial navigator, it was during her family’s experience with cancer that she first learned how to deal with the disease’s financial obligations.
She was 32 years of age and had 3 young children when her husband was diagnosed with cancer. Like many people, she was besieged with taking on the role of caregiver to her husband and kids; navigating the insurance paperwork and bureaucratic hoops to jump through; and a layoff for her and limited work for her husband during and after his treatment.
Still, she persevered, and after getting a handle on the financial hardships, and understanding the medical insurance paperwork, she recalled one particular time when she was feeling proud of learning how to do something related to insurance and wishing she could help others with this. However, this was back in 2003, and she said there were no financial navigators at that point—the industry had not even been developed yet.
Shortly after that, she began working at Munson Healthcare, where she started in patient access services doing registrations in the emergency department. She kept learning and segued into working on insurance verification and financial counseling for Munson. She began to help a few patients with financial navigation, but it was in a piecemeal way—there was no official department or specific protocol. That was until some social workers from the system approached her and mentioned that they were thinking of developing a financial navigation program. And with that, she became one of the first financial navigators at her institution, the Cowell Family Cancer Center in Traverse City, MI.
Munson Healthcare brought in a professional trainer to teach Lambert and the other navigator so they had some tools for their oncology financial navigation program. She says they did a good job of establishing the position, and that she and others working in the department learned as they went and personalized the program. Having been in the trenches for a number of years in handling the paperwork, learning through individual cases, the different payers, and varying programs, Lambert has learned a lot over the past 14 years.
Lambert offers some of her insights about initial consultations with patients, types of financial resources that are available, and a new financial navigation app she is currently developing.
AONN+: When you sit down with a patient, how do you embark on asking them about their financial situation?
Lambert: When we sit down for the first time, I try not to dive in too deep to start. I try to think of it as a meet and greet and then add in some health insurance education. When we sit down for the first time, I like to use it as an insurance review and gauge their reaction. I think it is really important to educate people about what their insurance is, because insurance has changed a lot. For a majority of baby boomers, they went from having insurance that covered everything but now insurance has evolved into patient financial responsibilities, specifically with higher premiums, deductibles, and out-of-pocket maximums. It’s also important for people to understand insurance terminology, because I do have people say to me, “my diagnostic mammogram’s not covered.” It is, but, if you have a deductible, then you have to pay for some of it. For a lot of people, if they have to pay for something, then they think they are not covered. I try to help people understand their insurance coverage and what their out-of-pocket cost should be. They will then start the conversation with me if they need assistance with some insurance optimization or financial support.
AONN+: What are your primary resources when you are looking for financial support for patients?
Lambert: There are 2 primary forms of financial support I help patients with: insurance optimization and financial assistance. As far as insurance optimization, I am a certified application counselor with the Healthcare Marketplace; therefore, I also can help with our state’s Medicaid applications, and I have an extensive education and background in Medicare. I can assist people with looking at how to get the best out of their existing insurance and help when looking at other options when it comes time to renew insurance.
As far as financial resources, ACCC is one of the first resources I discovered, and now I’m on the financial advisory committee. They have a lot of online guides and print resources. There is an online resource called NeedyMeds, which directs you to assistance programs for different medications a patient may be taking – both assistance from the pharmaceutical companies and from disease-specific foundations.
AONN+: How do you talk to people about deductibles and copays that come out of their pocket?
Lambert: That is usually one of the very first conversations I have: “Let’s look at your insurance; let’s look at your benefits.” Let’s get an idea of what things are going to cost for you. We have real-time verification at our facility, so I’m able to look and see if they have deductibles to pay. For example, if the patient has a $1,000 deductible, and she has paid $280 of her deductible and has another $720 to satisfy it, and it’s a month before her renewal, I know that the patient has a way to go to meet that deductible and we are going to have to start over again. We talk about that and have an open discussion. I try to make it educational so that they understand in the future when they are comparing insurance plans, and they know how to compare apples to apples when doing so.
AONN+: For patients who have completed their treatment, what kind of insurance plan should they consider when it is time for their renewal?
Lambert: I would ask if they are going to be in any type of treatment maintenance? Are they coming back to the doctor? There is an actual cancer insurance checklist, which is available online and you can print it, that offers side-by-side comparisons. You can see the different treatments and how they are going to be covered. If anyone asks about open enrollment, we really make time to be available to them to go over it because they discover when they are diagnosed that the plan that costs less when taking it out of their paychecks, it is costing them more during their treatment. We sit down to discuss the premium, deductible, and cap amounts.
Cancers are so different. Some recur and some are cured. My husband is actually cured. His shouldn’t recur; it has been gone for 13 years. He is looking at a different type of insurance versus someone who has a recurring cancer.
AONN+: Is there a repository website that might be a go-to for financial help?
Lambert: All of the resources I use are publicly available, but I try to individualize it. I haven’t run into too many situations where patients want to research it. They are more interested in researching their disease and their treatment. I find that they really put themselves in my hands. If I’m able to get them, say, $5,000 toward their treatment, they usually just jump on it and they sign up for that.
AONN+: Do you review the patient’s household budget to see where external financial resources might be able to help offset deductibles, premiums?
Lambert: If I can find them financial assistance, we don’t have to dig in as deeply. However, if I’m not able to get their whole deductible covered or they feel like their out-of-pocket costs are still more than they can afford, then we sit down as part of the payment plan acceptance process, and we actually write out their income and their budget and try to determine a fair midrange to see what they can pay to us. There are also some resources that help with outside expenses, and they may require information on their income and budget.
AONN+: Is there a consistent challenge you are facing with patients or insurance?
Lambert: The challenge we have is with the copay foundation systems. We have found there are 7 or 8 foundations that we can go to. Sometimes the funds are open and sometimes they are closed. Sometimes you can find the funds through a different foundation. I can’t get copay assistance from a pharmaceutical company for a Medicare or Medicaid patient, so we have to rely on these copay assistance foundations. When that happens, I apply directly to the pharmaceutical companies for free drug. This prolongs the process of getting the patient on treatment. When working with a patient and your typical go-to fund is not there, then you need to look at the next potential option.
AONN+: Can you talk about these copay foundations?
Lambert: There is a group of about 7 or 8 organizations that are disease-specific. For example, there are metastatic breast cancer, prostate, ovarian, and lymphoma foundations. The pharmaceutical companies and other organizations donate funds to these foundations. You can get a specified amount of funds depending on federal poverty level and household income. They are very generous. A family of 2 earning $80,000 to $100,000 can still get assistance.
AONN+: You are in the process of developing a financial navigation app. Can you provide an overview of what it will be and when it will be completed?
Lambert: The app is a huge financial value to the hospital or cancer center. It is a web-based service that will incorporate insurances, cancer treatments, and the potential cost of the treatments; it even includes travel costs and the potential costs from taking time off from work to attend treatments. Basically, it is mapping out the patient’s financial journey. It will help us find potential solutions, including insurance optimization and financial assistance for medical expenses and for household expenses. It will be able to connect us to these resources in order to sign up our patients for these resources directly. For example, if someone has Medicare and they do not have a supplement, it will show how much the costs will be if that person signs up for a Medicare supplement or even an Advantage plan.
AONN+: What is the name of the app, and when will it be available?
Lambert: The app is now in the pilot stage, and we would feel more comfortable sharing about it when we have completed our first 6 months of piloting. Perhaps we can continue this article with more information about this app in about 6 months.
- American Society of Clinical Oncology. The State of Cancer Care in America, 2016: A Report by the American Society of Clinical Oncology. J Oncol Pract. 2016;12(4):339-383.
- Markman M, Luce R. Impact of the cost of cancer treatment: an internet-based survey. J Oncol Pract. 2010;6(2):69-73.
- Yousuf Zafar S. Financial toxicity of cancer care: it’s time to intervene. JNCI: J Natl Cancer Inst. 2016;108(5):djv370.