Feature

Financial advocacy services ‘essential’ for cancer care

Clara Lambert

Every cancer center should offer financial advocacy services, according to new financial services guidelines from the Association of Community Cancer Centers.

The Financial Advocacy Services Guidelines — the first of their kind — aim to aid financial advocates and provide resources to strengthen existing programs.

“Over the past decade with the U.S. health care system in the throes of unprecedented changes, the average monthly cost of cancer treatment has more than doubled,” Clara Lambert, BBA, OPN-CG, oncology financial navigator at Cowell Family Cancer Center in Michigan and chair of the Association of Community Cancer Centers (ACCC) Financial Advocacy Network, wrote in an introduction to the guidelines. “The economic burden of cancer on patients and their families has led to recognition of a devastating side effect of the disease: financial toxicity.”

Financial advocacy programs help patients navigate insurance coverage; provide resources to patients about financial assistance; and communicate with patients, caregivers and clinicians to reduce economic barriers.

The guidelines recommend that every cancer program offer financial advocacy services with a central system and a dedicated staff member to coordinate and organize resources.

“The most important aspect of the guidelines is that it’s essential to add a financial advocacy service, because the patients need it,” Lambert told HemOnc Today in an interview.

Financial advocates should meet with patients at the time of diagnosis and before the start of treatment to discuss insurance and estimated costs. Contact and communication should continue throughout a patient’s treatment, according to the guidelines.

Working collaboratively with patients, caregivers and the health care team, financial advocates should aid in applications for financial assistance and screen for financial toxicity.

HemOnc Today spoke with Lambert about the ACCC financial advocacy guidelines and her role as an oncology financial navigator.

 

 

Question: How did these guidelines come about?

Answer: The guidelines came from the Financial Advocacy Network that has been a part of ACCC for about 10 years. One of the big reasons we developed these is financial advocacy is taking place at a lot of institutions, but through a lot of different roles, so it’s happening differently at each institution. We are trying to coordinate and have financial advocacy or financial navigation be, as a rule, something that is available to all patients.

 

Q: Why are these guidelines important?

A: There is so much change occurring with health care, health insurance and health care policy. It is complex and confusing and, to compound that on top of a cancer diagnosis, patients can be overwhelmed. A financial navigator removes some of the excess burden from the patient by navigating through those financial things. It helps people with something they really didn’t understand. Their focus should be on their cancer treatment. When there is another thing that they have to try to understand and figure out, it gets overwhelming. Financial advocacy helps alleviate some of those issues.

 

Q: Can you explain financial toxicity and why it is important to identify and address early?

A: Financial toxicity has come to the forefront in the last couple of years with high out-of-pocket costs. Because of this, patients make decisions about their medical treatment based on cost. The TV show Chicago Med included a scene of a patient-physician conversation that explains financial toxicity. The patient told the physician, “You should have let me die so at least my family could have gotten my life insurance. Now, how am I going to pay for all this treatment you gave me?” The patient wasn’t insured. Financial toxicity is that exactly: somebody thinking they should die rather than leave their family with this burden.

 

Q: How does financial toxicity appear?

A: Financial toxicity can take many different forms. In the case of oral oncolytics, if a patient is supposed to take their pill every day, they may take it every other day to try to make it last because of the cost. They may hop around from drug to drug to get free stuff, not get their prescription filled or not get treatment because of its cost. The earlier we identify and address this, the more help we can get for the patient. For oral oncolytics, we can apply for assistance prior to the first prescription fill and reduce the cost to a minimal amount. Other programs have time restrictions, so it is best to apply prior to treatment. This lessens the stress of the situation, so that a patient doesn’t first get the bill and worry about how they will pay. Having a plan going in reduces financial toxicity.

 

Q: What is the prevalence of financial toxicity?

A: I would say most people experience some form of financial toxicity, and it crosses all income levels. I know people who have pretty high incomes — so they can’t qualify for assistance — but the cost of their drug is still a hindrance. One of the reasons they may have more money is because they live within a budget and this treatment takes them out of their budget, making them feel uncomfortable. There are different levels of financial toxicity, but if someone experiences apprehension about their treatment because of the cost, that’s financial toxicity. It really is a problem and I think most everyone has a little bit of it.

 

Q: What resources are available for centers that want to establish or expand their financial advocacy services?

ACCC has a lot of great resources. A tool kit has been available for a few years and we are making sure it’s up-to-date. There is also a boot camp training. It is a pretty basic training, but it gives an excellent base to work from and build a program. We also are creating additional lessons to expand the existing program. The Financial Advocacy Network Advisory Committee is currently reviewing and updating the boot camp, something we need to continue into the future. Some of the graduates provided feedback for additional learning topics, which we are adding as well.

 

Q: How does a financial advocate fit into a multidisciplinary cancer care team?

Financial advocates are part of the support team and are sometimes classified as nurse navigators or social workers. It is important that we work with the patients. In the morning at Cowell Family Cancer Center Multidisciplinary Thoracic Oncology clinic, the physicians see all of the patients, then the patients go to lunch. During this time, we have a multidisciplinary tumor board to discuss those patients. In the afternoon, all the support services are introduced to the patients, and we go and talk to them. We are not clinicians, but we are part of the care team as a support.

If a patient expresses to me that finances are a barrier to their treatment, I will work to eliminate or reduce that barrier. Typically, I’ll look at what a clinician has prescribed and try to find help with that. If I can’t, I might go back to the clinician and say, “Mrs. Smith can’t afford this, it’s going to cost her $6,000. Is there something else that you can do?” I am not going to tell a clinician what to do, but I will let them know the patient has concerns. It is important that there is two-way communication between the clinicians and the support team.

 

Q: The guidelines recommend that personnel use or develop a tracking/management tool. What tools exist?

Some software development companies are developing financial navigation software. We are piloting one right now called TailorMed, and there is one other tool called Vivor. Without a dedicated software tool, spreadsheets like Excel work — that is what I used for the first 4 years in this position.

It is important to track what we do, because a lot of it will help the bottom line of the cancer treatment center, either by helping the patient find a way to pay for treatment, getting it paid or getting free drugs. There are a lot of possible interventions. Therefore, it’s important to show how many patients we worked with and how we helped them. It helps us identify trends and make decisions about whether we need more staff or other resources. – by Cassie Homer

For more information:

Clara Lambert can be reached at Cowell Family Cancer Center, 1105 6th St., Traverse City, MI 49684; clambert1@mhc.net.

Reference:

Lambert C, et al. Association of Community Cancer Centers. “Financial Advocacy Services Guidelines 2018.” Available at: www.accc-cancer.org/home/learn/financial-advocacy/guidelines. Accessed on April 24, 2018.

Disclosures: Lambert reports a consultant role with TailorMed.

Clara Lambert

Every cancer center should offer financial advocacy services, according to new financial services guidelines from the Association of Community Cancer Centers.

The Financial Advocacy Services Guidelines — the first of their kind — aim to aid financial advocates and provide resources to strengthen existing programs.

“Over the past decade with the U.S. health care system in the throes of unprecedented changes, the average monthly cost of cancer treatment has more than doubled,” Clara Lambert, BBA, OPN-CG, oncology financial navigator at Cowell Family Cancer Center in Michigan and chair of the Association of Community Cancer Centers (ACCC) Financial Advocacy Network, wrote in an introduction to the guidelines. “The economic burden of cancer on patients and their families has led to recognition of a devastating side effect of the disease: financial toxicity.”

Financial advocacy programs help patients navigate insurance coverage; provide resources to patients about financial assistance; and communicate with patients, caregivers and clinicians to reduce economic barriers.

The guidelines recommend that every cancer program offer financial advocacy services with a central system and a dedicated staff member to coordinate and organize resources.

“The most important aspect of the guidelines is that it’s essential to add a financial advocacy service, because the patients need it,” Lambert told HemOnc Today in an interview.

Financial advocates should meet with patients at the time of diagnosis and before the start of treatment to discuss insurance and estimated costs. Contact and communication should continue throughout a patient’s treatment, according to the guidelines.

Working collaboratively with patients, caregivers and the health care team, financial advocates should aid in applications for financial assistance and screen for financial toxicity.

HemOnc Today spoke with Lambert about the ACCC financial advocacy guidelines and her role as an oncology financial navigator.

 

 

Question: How did these guidelines come about?

Answer: The guidelines came from the Financial Advocacy Network that has been a part of ACCC for about 10 years. One of the big reasons we developed these is financial advocacy is taking place at a lot of institutions, but through a lot of different roles, so it’s happening differently at each institution. We are trying to coordinate and have financial advocacy or financial navigation be, as a rule, something that is available to all patients.

 

Q: Why are these guidelines important?

A: There is so much change occurring with health care, health insurance and health care policy. It is complex and confusing and, to compound that on top of a cancer diagnosis, patients can be overwhelmed. A financial navigator removes some of the excess burden from the patient by navigating through those financial things. It helps people with something they really didn’t understand. Their focus should be on their cancer treatment. When there is another thing that they have to try to understand and figure out, it gets overwhelming. Financial advocacy helps alleviate some of those issues.

 

Q: Can you explain financial toxicity and why it is important to identify and address early?

A: Financial toxicity has come to the forefront in the last couple of years with high out-of-pocket costs. Because of this, patients make decisions about their medical treatment based on cost. The TV show Chicago Med included a scene of a patient-physician conversation that explains financial toxicity. The patient told the physician, “You should have let me die so at least my family could have gotten my life insurance. Now, how am I going to pay for all this treatment you gave me?” The patient wasn’t insured. Financial toxicity is that exactly: somebody thinking they should die rather than leave their family with this burden.

 

Q: How does financial toxicity appear?

A: Financial toxicity can take many different forms. In the case of oral oncolytics, if a patient is supposed to take their pill every day, they may take it every other day to try to make it last because of the cost. They may hop around from drug to drug to get free stuff, not get their prescription filled or not get treatment because of its cost. The earlier we identify and address this, the more help we can get for the patient. For oral oncolytics, we can apply for assistance prior to the first prescription fill and reduce the cost to a minimal amount. Other programs have time restrictions, so it is best to apply prior to treatment. This lessens the stress of the situation, so that a patient doesn’t first get the bill and worry about how they will pay. Having a plan going in reduces financial toxicity.

 

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Q: What is the prevalence of financial toxicity?

A: I would say most people experience some form of financial toxicity, and it crosses all income levels. I know people who have pretty high incomes — so they can’t qualify for assistance — but the cost of their drug is still a hindrance. One of the reasons they may have more money is because they live within a budget and this treatment takes them out of their budget, making them feel uncomfortable. There are different levels of financial toxicity, but if someone experiences apprehension about their treatment because of the cost, that’s financial toxicity. It really is a problem and I think most everyone has a little bit of it.

 

Q: What resources are available for centers that want to establish or expand their financial advocacy services?

ACCC has a lot of great resources. A tool kit has been available for a few years and we are making sure it’s up-to-date. There is also a boot camp training. It is a pretty basic training, but it gives an excellent base to work from and build a program. We also are creating additional lessons to expand the existing program. The Financial Advocacy Network Advisory Committee is currently reviewing and updating the boot camp, something we need to continue into the future. Some of the graduates provided feedback for additional learning topics, which we are adding as well.

 

Q: How does a financial advocate fit into a multidisciplinary cancer care team?

Financial advocates are part of the support team and are sometimes classified as nurse navigators or social workers. It is important that we work with the patients. In the morning at Cowell Family Cancer Center Multidisciplinary Thoracic Oncology clinic, the physicians see all of the patients, then the patients go to lunch. During this time, we have a multidisciplinary tumor board to discuss those patients. In the afternoon, all the support services are introduced to the patients, and we go and talk to them. We are not clinicians, but we are part of the care team as a support.

If a patient expresses to me that finances are a barrier to their treatment, I will work to eliminate or reduce that barrier. Typically, I’ll look at what a clinician has prescribed and try to find help with that. If I can’t, I might go back to the clinician and say, “Mrs. Smith can’t afford this, it’s going to cost her $6,000. Is there something else that you can do?” I am not going to tell a clinician what to do, but I will let them know the patient has concerns. It is important that there is two-way communication between the clinicians and the support team.

 

Q: The guidelines recommend that personnel use or develop a tracking/management tool. What tools exist?

Some software development companies are developing financial navigation software. We are piloting one right now called TailorMed, and there is one other tool called Vivor. Without a dedicated software tool, spreadsheets like Excel work — that is what I used for the first 4 years in this position.

It is important to track what we do, because a lot of it will help the bottom line of the cancer treatment center, either by helping the patient find a way to pay for treatment, getting it paid or getting free drugs. There are a lot of possible interventions. Therefore, it’s important to show how many patients we worked with and how we helped them. It helps us identify trends and make decisions about whether we need more staff or other resources. – by Cassie Homer

For more information:

Clara Lambert can be reached at Cowell Family Cancer Center, 1105 6th St., Traverse City, MI 49684; clambert1@mhc.net.

Reference:

Lambert C, et al. Association of Community Cancer Centers. “Financial Advocacy Services Guidelines 2018.” Available at: www.accc-cancer.org/home/learn/financial-advocacy/guidelines. Accessed on April 24, 2018.

Disclosures: Lambert reports a consultant role with TailorMed.