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Health Literacy

Health literacy is defined as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions."1 The skills required encompass reading, listening, analytics, numeracy, and decision-making, plus the ability to navigate a complex and changing healthcare delivery system. Healthcare providers, patients, and other stakeholders have important roles in health literacy.

According to the Centers for Disease Control and Prevention (CDC):2

Anyone who provides health information and services to others, such as a doctor, nurse, dentist, pharmacist, or public health worker, also needs health literacy skills to

  • Help people find information and services
  • Communicate about health and healthcare
  • Process what people are explicitly and implicitly asking for
  • Understand how to provide useful information and services
  • Decide which information and services work best for different situations and people so they can act

 

Given the increasing complexity of cancer diagnosis, treatment, follow-up with survivorship care plans, health literacy is integral to delivery of patient-centered care.

1. Nielsen-Bohlman L, Panzer AM, Kindig DA (eds). Health Literacy: A Prescription to End Confusion. Institute of Medicine Committee on Health Literacy. Washington, DC: National Academies Press; 2004.
2. Centers for Disease Control and Prevention. What is Health Literacy? 

Featured Program: Let's Be Clear: Communicating to Improve the Cancer Patient Experience

With this education project ACCC seeks to help cancer programs across the country to improve survivorship programming through the application of the health literacy principles.
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Health Literacy & Clear Communication is a dynamic eCourse that delivers simple methods to improve patient-provider communications. Engage with oncology-specific exercises, activities, and situations and receive real-time feedback and suggestions to put evidence-based strategies into practice.
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From the ACCCBuzz Blog

Advocacy in Action: Anna’s Story


March 02, 2020
Financial Advocacy Network Logo

By Angie Santiago

As the Lead Financial Counselor at the Sidney Kimmel Cancer Center at Jefferson University Hospital in Philadelphia, my job is to help patients understand what their health insurance covers and explore options for additional sources of financial support if necessary. Our center serves approximately 4,000 patients per year, and I help many of those patients locate the resources they need to access life-saving care. About 18 months ago, I learned about an additional roadblock to that care: “non-medical switching.”

Non-medical switching occurs when a health plan switches a patient’s prescribed drug or regimen for reasons other than efficacy, side effects, or adherence. These switches are often related to drug formulary changes aimed at reducing drug costs. Non-medical switching may occur in the middle of a plan year, when patients are unable to shop for alternative health plans that may provide better coverage of their prescribed treatment.

Typically, when cancer patients are prescribed drugs by their oncologists, those drugs are covered by the medical benefits provided for in a patient’s health plan. Patients most often receive their drugs from the hospital pharmacy, and, in most cases, the patient’s medical benefits cover a significant portion of their drug costs, or insurers allow patients to use copay cards, foundation assistance, or hospital charity care.

This process can be interrupted if a patient’s drug regimen is unexpectedly switched by his or her insurer. In some cases, this may require patients to obtain their medications from a different source, such as a specialty pharmacy, rather than the patient’s hospital pharmacy.

Copays for prescriptions obtained through specialty pharmacies may be higher than copays for prescriptions obtained through hospital pharmacies. What’s more, when a patient receives a prescription through a specialty pharmacy, an inability to pay immediately can delay treatment, as these pharmacies often will not deliver a prescribed medication until payment is received. However, when a patient receives medication from a hospital pharmacy, copays can be delayed until the patient is able to pay.

In addition, the process of a hospital obtaining a prescription medication from a specialty pharmacy can be convoluted and difficult. Delays from the time a prescription is placed to the time the hospital receives the medication can be lengthy and interfere with a patient’s treatment schedule.

Anna’s Story

At the end of 2018, our billing precertification team contacted a patient’s (we’ll call her “Anna”) insurer to request that authorization for her infusion drug be extended for six months. Anna’s insurer denied the request. Her plan now covered her cancer medication under her pharmacy benefit rather than her medical benefit. This meant that Anna’s insurer required that her prescribed infusion drugs be filled by a specialty pharmacy rather than Jefferson’s in-house hospital pharmacy. The insurer mandated that the specialty pharmacy Anna use be a specific retail pharmacy external to the Jefferson hospital system. When we contacted Anna with this information, she was confused about the change and anxious that the medication that was working for her cancer would no longer be available to her.

Anna was on a treatment plan that required infusions every two weeks, so I had to ensure that her medication would be ready for her next treatment. For a week, I called the insurer’s designated specialty pharmacy twice a day to urge it to complete its own benefits investigation and approve Anna’s claim.

When Anna’s claim was approved, however, her copay went from $0 to $80 per treatment. This $160 monthly cost was unsustainable for Anna on her fixed income, and the specialty pharmacy’s policy was to not ship the drug until payment was received. Anna was understandably upset, but with a simple inquiry I determined that, due to Anna’s financial situation, the drug’s manufacturer would pick up her $80 copay. Such inquiries are typically the responsibility of the pharmacy when a patient expresses an inability to pay, but this specialty pharmacy billed Anna for the entire copay without inquiring about a manufacturer discount.

Ultimately, I was able to provide the copay information and schedule delivery of Anna’s medication on time, and her treatment schedule continued uninterrupted. I continued to contact the specialty pharmacy every two weeks for the next six months to ensure Anna’s infusion drugs were delivered on time.

Anna’s experience of having her insurer switch coverage of her infusion drug from her medical benefit to her pharmacy benefit soon began to happen to other patients with whom I worked. This required us to institute new processes in our cancer center for receiving drugs from specialty pharmacies. Our pharmacy does not accept infusion drugs when they are transported by patients from external pharmacies (a practice called “brown bagging”). Therefore, we had to put into place processes to ensure that external pharmacies delivered infusion drugs directly to us rather than dispense them to patients (“white bagging”).

As we see additional patients required to use specialty pharmacies to fill their drug prescriptions, more and more of them are facing unexpected copays that many cannot afford.

Bearing Witness

My experience with Anna led me to research the prevalence of non-medical switching, and I learned about a coalition group that is building support for a state law that prohibits the practice. Pennsylvania House Bill 853 aims to protect commercially insured Pennsylvanians from unfair coverage changes during a policy year that can deny or increase the cost of a treatment, service, or prescription that a patient is already receiving.

On Tuesday, February 18, 2020, I testified before the Pennsylvania House Consumers Affairs Committee about my experience with Anna and other patients like her who unexpectedly experienced changes to their drug coverage during cancer treatment. I described the new processes my cancer center had to develop to accommodate this new method of receiving infusion drugs and the time it took away from our staff. Two additional people—a father of a girl with epilepsy and a pediatrician—also testified about the impact of insurers switching prescriptions for oral medications midyear from brand name to generic versions.

By bringing more attention to this issue, my hope is that non-medical switching will stop and that other patients will be spared this additional anxiety during an otherwise very stressful time.

ACCC's Financial Advocacy Network's tools and resources can help build the confidence of financial advocates by connecting them with solutions and ultimately improving the patient experience. Our network aims to empower providers to proactively integrate financial health into the oncology care continuum and help patients gain access to high-quality care for a better quality of life.

Our 2020 Patient Assistance & Reimbursement Guide, a comprehensive listing of cancer drug assistance and reimbursement programs, is a valuable tool for helping cancer programs further alleviate their patients’ financial burden.