Financial toxicity and patient advocacy

Gillian Bruce shares a summarised version of her case management post qualification research paper Financial toxicity – an unrecognised oncology symptom due to insufficient patient advocacy.

Patient-centric vs. utilisation managers

When I started my case management post qualification in 2017, my aim was to learn better ways to advocate for patients with new skill sets and knowledge. Six months before my final exam, my friend was diagnosed with breast cancer. I helped her navigate the quagmire of information after seeing how good case management saves a patient’s time, money and undue emotional stress while bad case management adds to all that. 

I realised that SA’s case managers weren’t trained to be patient-centric but to be utilisation managers. Meaning they are there for the financial benefit of the company they work for, by managing patients. This not only applies to medical aids or managed care but providers and anyone who comes into contact with the patient. 

Financial toxicity is one of the most complained about side effects of chemotherapy, next to nausea and vomiting. This is due to a barrier that is created in the essential triangle of patient-doctor; doctor-case manager; and case manager-patient. Thus, preventing successful patient advocacy and compliance. 

Often when a patient is diagnosed, the immediate focus is on their medical needs. As treatment planning takes over, patients can get lost. Unlike the medical and clinical side effects that case managers help support the patient through, with medication and psychosocial referrals, financial toxicity is a devastating consequence that we forget to educate the patient on. Thus the patient and family are often unprepared and left to deal with it alone. 

Understanding the full financial impact

Case managers and doctors in the different fields felt that they knew enough about what went on in each other’s sector, how PMBs work, and felt that everyone communicated sufficiently. Many also felt they had sufficient knowledge of benefits, limits and worked to assist patients on making informed decisions. However, when it came down to the nitty-gritty, this wasn’t always the case, often resulting in patients being left to make decisions they didn’t understand the full financial impact of. 

Upgrading plans

For example, when patients are given the option to upgrade their medical aid plan to either a higher or highest option. 

Case managers and providers often don’t think of the financial consequences when they request expensive treatment above patient benefits. Thus, the only way to get the required treatment is by self-funding, upgrading or the elusive ex-gratia. 

When the patient upgrades to receive this treatment, they are now looking at an increased monthly contribution. However, they don’t always understand that, while they will have increased benefits, these benefits are pro-rated to start, depending on where in the year they upgrade; the amount that they’re expecting isn’t the amount they will have access to. 

On top of this, once the oncology benefit is depleted, the patient remains liable for the continuation of treatment until the new benefits begin. This often results in one of two scenarios: the patient pays the increased benefit and for the continuation of care due to depleted benefits, for which he must get financial assistance, either in the form of loans or selling assets. Or the patient continues paying the increased benefit but becomes non-compliant in treatment while waiting for the new benefits to start. This leads to progression which is ultimately very costly for the scheme. 

Lack of imperative info

This lack of information means that the plan the patient upgrades to may not cover the treatment required in full. This breakdown in information between patient, doctor and case manager often leads to the patient speaking to a medical aid broker who may not have experience in oncology and incorrect advice may be given and the patient’s financial quagmire deepens. The patient then becomes distressed about the cost of treatment and other financial obligations, their ability to cope decreases, and this can then present as worsening symptoms and adversely affect the patient’s overall outcomes.

Patients with cancer who have no case manager to guide them through the obstacles of how medical schemes work and where their treatments are authorised from and which benefits their required resources should pay from end up with an accumulation of accounts that are often short-paid or paid from the wrong benefit or patients are given incorrect advice to upgrade. These all exacerbate an already financially-constrained patient and family. 

This leads to families downscaling their standard of living to ensure their loved one gets the needed treatment. When the scheme declines treatment due to no funds, this often leads to non-adherence of the patient as they can’t afford the treatment that is needed.

Responsibility of case manager and oncologist

Today’s oncology treatment is more effective and less toxic but is more expensive. Just like oncologists and case managers are duty-bound to explain physical side effects, such as vomiting, they are just as responsible for warning patients about the financial side effects of treatment, including co-payments and shortfalls for the use of biologicals or non-designated provider (non-DSPs) or out of network doctors/hospitals.

Although chemotherapy drugs are vital to the survival of the patient, the use of these drugs subject the patient to extreme financial hardship. Unfortunately, the full impact of financial toxicity on oncology patients isn’t fully understood, although it has been vigorously studied for many years. 

One thing we’re sure of, is that it’s not only a patient’s savings that is affected due to costs that outweigh what the scheme pays, but also the cost of the burden on caregivers, cost of transport to and from treatment, financial impact due to lost work, productivity and running out of sick leave days. This also directly affects the employer of both the patient and the carer, as they must employ temps and pay sick leave for the employee. Everyone is directly affected.

Happy and satisfied patient

Ensuring continuum of care and continuous interaction with a patient ensures correct use of resources and reduction in authorisation duplication. Early recognitions of warnings for possible arising problems prevents lengthy hospital stays or readmissions. Correct authorisation upfront ensures correct payment at claims level ensuring fewer claim rejections and denials. 

All these lead to happier and more satisfied patients, who adhere to their treatment. In turn, they stick within their benefits because they are educated and self-advocate for their financial benefit. This keeps the schemes more financially fluid. 

Is there a breakdown in communication?

The purpose of this study was to investigate the breakdown in communication between medical schemes, patients, and oncologists with regards to benefits, limits, co-payments, and exclusions, leading to out of protocol requests and unrealistic treatment expectations on the patient’s part, ultimately leading to patient’s financial toxicity. 

While there is no doubt utilisation management is imperative to maintain and control cost burden within schemes, this study shows that it’s evident that case managers are needed within the practices and the schemes where their jobs are: 

  • Educating patients on their condition, their treatment options and their scheme benefit limits and rules. 
  • To collaborate with schemes and oncologists as well as other specialists involved in the patient’s care. 
  • Case managers should be able to determine medical necessity and achieve savings while never losing sight of their main responsibility: the patient. 
  • Finally, by educating patients in self-advocacy, barriers are reduced in the essential doctor-patient-case manager triangle which improves patient engagement. Patient engagement ensures better treatment compliance and thus better outcomes. 

As the population of oncology patients grows, physicians face increasing time constraints, and the cost of oncology treatment skyrockets. This only increases the role and value of a well-trained oncology case manager who is willing to step up, advocate and collaborate with all the medical parties to ensure the patient receives the best treatment available to them. This won’t be achieved by authorising first and notifying patients of hefty co-payments later as what’s currently occurring, but by sitting with patients and explaining the benefits, limits, co-payments, and possible financial implications.

With these steps we can provide our oncology patients with thoughtful, passionate case management that will ensure they are assisted and guided through oncology case management without the financial burden that they are suffering with currently.

Case study

Case study

Jane was referred to a non-DSP surgeon for the initial diagnosis. This doctor prefers a particular oncology group who are a non-DSP on Jane’s medical aid. So far, Jane has a PMB diagnosis and would’ve had co-payments on all consultations. When the oncologist offered to waiver the co-payment, Jane still would have been liable for the co-payment attached to the chemotherapy as the practice has no control over this; 25% on a R25 000 biological that wasn’t a PMB at that stage, every month for a year. This was excluding all the other medications and specialist co-payments. On one medication alone, by explaining the reasons and benefits for the change to a DSP, Jane saved over R100 000.

Gillian Bruce is a certified clinical case manager at ICON. Oncology is a passion of hers. She loves to learn what’s new, and working with the medical aids, doctors and patients because she believes together they make a difference.

MEET THE EXPERT – Gillian Bruce

Gillian Bruce is a certified clinical case manager at ICON. Oncology is a passion of hers. She loves to learn what’s new, and working with the medical aids, doctors and patients because she believes together they make a difference.

Header image by Adocbe Stock

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