How One Organization is Helping People Navigate the ‘Pain, Confusion and Chaos’ of a Cancer Diagnosis

When someone is diagnosed with cancer, they likely have many questions or concerns about what’s next. Along with pain, chaos and confusion, concerns about financial toxicity often arise.

“This is really at the heart of why we started the DONNA Foundation and everything that we do,” Donna Deegan, founder of the DONNA Foundation, said during the foundation’s How to Be Fearless Virtual Seminar. “I don't know that we knew to call it financial toxicity back in 2003 when I started getting people together to create this organization, but that is exactly what it was.”

During the seminar, Deegan; Erin Bradshaw of Patient Advocate Foundation; and Vonya Journiette of DONNA CareLine and Patient Advocate Foundation, discussed what options are available for patients with cancer to help address concerns around financial toxicity.

Deegan: Erin, what exactly do we mean when we say financial toxicity?

Bradshaw: So, financial toxicity is relatively a new term. But the problem itself is not new. And the exact definition really does differ. But basically, it describes problems that cancer patients are having related to the out of pocket cost associated to their treatment.

Deegan: And when somebody calls the CareLine, what generally are they dealing with?

Bradshaw: The DONNA CareLine does not have any criteria around your insurance status, your income, your age, or any elements to that nature, we're here to help you when you're dealing with issues that are presenting around financial or access to care support. I would say that we see traditionally people that are seeking support for more immediate financial support needs, like basic cost of living or out of pocket costs associated to their medical care. But there's also long-term support needs as well as we look at the trajectory of their health care and their treatment plans and the transition that they might be having from working to maybe moving into a disability status. And we also have individuals that are facing challenges around their insurance, whether they lack it and don't have adequate coverage or support for those costs associated, or those that have insurance, but maybe it's difficult to afford those obligations like premiums, deductibles, copays or coinsurance. And, we are here to help people navigate health insurance denials and appeals. So, if they have been prescribed a particular treatment protocol, and maybe there's been a concern or denial from their insurance company, we can help them maneuver through those scenarios as well.

So, I would say that what we offer is quite vast. It's really those practical support needs that many people face and might have never experienced before they were diagnosed. And we're here to hold their hand and really navigate and find out what steps we should take with you, and really take that burden and allow you to recover and be less stressed about the issues and more focused on your health care.

Deegan: Given financial restraints, some people can get healthcare for free. And I'm always amazed at how many people are surprised about that, or who don't know that that's available. So that's one of the things that I guess you, Erin, probably help to navigate people through.

Bradshaw: One of the first things that we want to evaluate for anyone that is uninsured is the eligibility enrollment and application to those type of products. If it is a feasible option, we want to ensure that we're looking for long term solutions to their immediate needs, because that is the best outcome. And so we will help them evaluate their current circumstances, their financial status, and look at all available options for health insurance products, whether that's a marketplace plan, employer-based plan, or even a Medicaid plan or someone who might be rolling into Medicare. So, we're here to help you at any point that you're at.

There are some eligibility guidelines you have to meet, there are some open enrollment periods. Great news, right now they have opened the marketplace enrollment under an executive order. But we are very aware and know when special enrollment opportunities exist. We also understand circumstances can change that can open special enrollment opportunities. But we don't want you to feel like you're alone, we want to be able to help you and uncover and help and enroll in these things that are beneficial. There (are subsidies), premium assistance is aligned with your financial situation and it is relative to where you are today. So, things change. And as you progress through your treatment, there might be every day we need to evaluate things differently. So just call us and allow us to help you. Just know we're here and know that there are programs that you may not be aware of, but we want to certainly explore every possible means.

Deegan: I cannot tell you how many women that I speak with, who say, “Gosh, I just don't want to tell my family because I don't want to stress them out either financially or emotionally.” Vonya, as a case manager, do you find that with the recipients that you speak to?

Journiette: They're just in shock about having that medical diagnosis, and then starting a process of going through testing and treatment and follow up. So, they do feel overwhelmed. And I don't think patients are really aware of how long the treatment process may be, they may think it may be a short term, sort of treatment path. So, they don't really want to bother family or friends because they think it's something they can resolve or handle within a few months. So, they kind of just internalize a lot of things. But you know, I just try to provide support to them, let them know that there are other organizations or support groups with people who are going through similar diagnosis or similar thoughts that can provide support to them if they're not able to reach out to their family and friends. So sometimes talking to someone who has that same diagnosis, and is going through the journey, kind of validates what you're feeling, and eases some of that anxiousness that a person may feel.

Deegan: Vonya, are you finding that with COVID there's a whole additional layer of issues that people call in with?

Journiette: Yes. With losing their job, maybe having children at home and trying to balance dealing with their medical condition and having to manage more of their family lifestyle and the kids, that is adding another layer to them being able to focus on the treatment and healing and moving forward.

Deegan: Do you find that you end up having more than one conversation with a lot of these folks?

Journiette: They do. Even after we may have resolved the initial issue because they feel comfortable with us. They'll call us back. You know, whether they have another issue or maybe they just want our opinion or thoughts, process of what they're thinking to see if it's something that they should continue with or should maybe they should think another way, but they do tend to call back, which is fine. You know, we're here to support as many as we can. So, I feel happy that they feel comfortable enough to call back and share with me.

Deegan: Erin, let's talk a little bit about when patients call in and they have that, “I'm lost, and I don't know where to begin” (feeling). How would you help patients increase their health literacy as they go through this process?

Bradshaw: One of the goals of what we do through our case management services is we listen, address, support and help them navigate through the best solutions that we can provide for them. But we also we believe in empowering and educating. And so, health insurance literacy, really is just the confusion, and the lack of understanding around those kind of processes and what the best solutions are.

And that's something through our 25 years of experience here that we've learned over time that we can diffuse and offer very tangible direction and support and guide through example, we do a lot of conference calling with our patients to provide immediate support. And they also can listen to their case manager navigate through what we're trying to resolve. And then we follow up with conversations (on) action steps and follow throughs and tangible elements of connection. And then we also like to complement that with educational resources that we've developed over the years to support that as well, because we recognize that it is more than just putting a band aid on a temporary situation, we really need to be evaluating them from a holistic standpoint, and recognizing what it is that's causing that angst and stress today, and trying to help them overcome that, but also be very proactive, and look into the future about what potentially could be arising or what to expect to improve their knowledge and awareness. And then, in essence, their health literacy around what might be coming to the forefront. We're trying to help them understand that earlier on, but we are here to help them when it does present, if we need to continue around that.

Deegan: Erin, can you explain to people how the CareLine works for financial aid. How do you qualify for that and then beyond that, what other types of resources would be available for people?

Bradshaw: Through the DONNA CareLine, you can connect with us directly through a toll free line, or through an online access to request assistance, you will be either met by a medical intake specialist during your phone call that will do a basic needs assessment to understand what the most immediate needs are and gain some demographic information that will then be assigned out to a case manager like Vonya, that will then reach out to you and begin a deeper conversation about your support needs and gain a lot more details. Through the case management support, we are evaluating and understanding your specific needs that are presenting and any kind of urgent barriers that you also might be coming up to. So, the case management service is a vast net of support. And we are looking at all different feasible options, and all different financial solutions.

While we don't have financial assistance through the case management services, we are trying to locate it and apply. There is a complimentary financial aid fund that is intended to be for support for people that are dealing with basic non-medical needs. So for instance with the Donna financial aid fund, there is a 400% of Federal Poverty Level criteria, a diagnosis of breast cancer, that you're in active treatment or have been in the past six months, and that you are in immediate need of some support around transportation, housing, utilities, nutrition. So, it's complimentary and it definitely is available when available funding is present, the case manager is doing an analysis based on the support that you need and helping navigate through possible solutions. And they will provide that as an alternative option, in addition to the support that they're offering, when there is funding available, and when it appears that it meets what you are seeking.

So, the first step, of course, is to call the organization and connect with the case manager. And they're the ones that are there. And we're hoping that not only even from a financial standpoint of providing that one-time grant, but the complimentary to case management is such an added bonus, because it is looking at the situation from a larger perspective.

For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.

*This virtual seminar was simulcasted on CURE®