Receiving the correct diagnosis for a rare condition is only the first hurdle for rare disease patients. These patients must also learn about their condition, manage their care and find the right treatment regimen. Patient care coordinators make this work less overwhelming. As an informed liaison between the patient and healthcare resources, patient care coordinators connect patients to the care they need — including necessary medications.
Companies that create and distribute medications for rare conditions benefit from strong relationships with patient care coordinators. By keeping coordinators informed, pharmaceutical manufacturers and distributors can drive product success and reach patients in need.
The Role of the Patient Care Coordinator
Patient care coordinators offer a single contact person for patients with rare conditions. According to a description by Bryant & Stratton College, a patient care coordinator may:
- Schedule patients’ appointments and answer patients’ questions about appointments.
- Help patients understand providers’ findings, prescribed treatments and continuing care.
- Communicate with insurance companies and other funding sources to arrange coverage for patient care.
- Obtain prior authorizations when needed.
- Explain costs and payment options with the patient.
- Assist patients and care teams in setting goals for patient care.
Not all patient care coordinators do the same tasks. Coordinators may tailor their efforts to the needs of each patient, as well as to the organizations they serve.
In a 2022 study in the Orphanet Journal of Rare Diseases, Holly Walton and fellow researchers found that “patients with rare conditions often do not have a designated care coordinator,” leaving those patients and their families to attempt to coordinate care on their own. Lack of a designated care coordinator is tied to poorer mental and physical health outcomes for patients.
When patients don’t have an informed patient care coordinator, family members may suffer as well. Researchers Melissa K. Cousino and Rebecca A. Hazen found that the parents of children with chronic illnesses reported higher stress levels than parents of children without these conditions. These increased stress levels were associated with both “greater parental responsibility for treatment management” and “with poorer psychological adjustment in caregivers and children with chronic illness.”
Stress mounts when appointments are scheduled inefficiently, communication falls through, and care does not adapt as the patient’s needs change. In a 2021 study, Amy Simpson and fellow researchers found that when patients didn’t have a care coordinator, they faced additional burdens related to their healthcare. These burdens include:
- Additional delays in accessing needed healthcare, including medications.
- Reports of increased fatigue and other impacts on physical health.
- Financial burdens, including travel costs and time spent away from work.
- Disruptions to school, work, social activities and routines, leading to poorer mental and emotional health.
Patients who participated in the study named “having support from a professional to coordinate care” as one of the top solutions to these problems.
Patient Care Coordinators as a Medication Throughline
The absence of patient care coordinators negatively impacts members of the healthcare system as well as patients.
The condition-based coding system used in U.S. healthcare allows for easy sorting and payment by condition. Yet the lack of interoperability means that patients may bounce among providers, facing constant administrative hurdles, says Chris Carlson, senior vice president of customer experience and complex health solutions at UnitedHealth Group. A 2019 study by Ara Jo and fellow researchers found that patients with rare diseases are 52 percent more likely to be referred to a specialist than other patients.
Every time a patient starts from scratch with a new provider, those who provide treatments for rare diseases must start from scratch as well. Connections to the patient that depended on the provider or insurer are lost.
Patient care coordinator relationships help preserve this link between the patient and the source of needed medication. If a patient switches providers, neither the patient nor the pharmaceutical organization start from scratch. The patient care coordinator can bring a new provider up to speed, while also ensuring that medications reach the patient without interruption.
Lack of strong care coordination impacts medication providers indirectly as well, through lack of funding or support for treatment.
A 2020 Commonwealth Fund study reveals that 43 percent of working-age adults in the U.S. do not have adequate health insurance coverage. Among them, 12.5 percent have no insurance, 9.5 percent are facing a coverage gap, and 21 percent have insufficient income to cover their plan’s high deductibles or out of pocket costs, making them effectively underinsured.
“Rare diseases and the drugs developed to treat them are costly for patients, providers, and payers, and their costs continue to rise,” Robert Handfield and Josh Feldstein wrote in a 2013 article in American Health & Drug Benefits. A decade later, these costs are still going up.
Patients who do not have adequate insurance coverage can’t easily afford medications to treat a rare condition. Even if alternate funding options exist, the effort required to research these options and manage applications for them may prove too burdensome for patients and families. Patients who are unaware that a medication exists for their rare disease may not even try to seek medication funding.
By building connections with patient care coordinators, pharmaceutical providers can help address the healthcare funding crisis that threatens patient care. Companies can inform coordinators about treatment options, making it easier for coordinators to seek funding and communicate with insurance companies.
How to Build Successful Relationships With Patient Care Coordinators
To enjoy the benefits of quality communication for product success, pharmaceutical organizations may need to fill another need: Provide information to patient care coordinators about rare diseases and treatments.
Without access to information about rare diseases and available treatments, even a dedicated patient care coordinator may struggle to provide optimal support for patients. In a 2017 study by Rare Diseases Europe:
- 75 percent of surveyed rare disease patients and families say that social services professionals, including social workers and teachers, don’t have enough knowledge and information about rare diseases.
- 71 percent said social services professionals are “not sufficiently prepared” to support rare disease patients.
As a result, nearly three in four rare disease patients or their family members say they spend time educating their caregivers. Two-thirds (67 percent) say that these professionals communicate rare disease-related information “badly” or “very badly.”
Lack of communication leads to poorer outcomes for patients and their caregivers. For patients, the effect isn’t limited to lack of information about their condition or lack of communication among healthcare providers. Patients and caregivers also experience ongoing stress and negative health outcomes when faced with lack of information about financial coverage for care — especially when a condition is progressing, note researchers Tai L.S. Pasquini, Sarah L. Goff and Jennifer M. Whitehill in a 2021 study.
Early communication with patient care coordinators offers the best chance for pharmaceutical providers to build lasting connections with patients. When relationships are built at an early stage:
- Pharmaceutical providers can provide up-to-date information about treatment options.
- Patient care coordinators can address financial concerns more promptly.
- Patients receive better information, better treatment and prompt access to the medication they need.
The best source of information about treatments for rare diseases is often the inventor or manufacturer of those treatments. When pharmaceutical companies connect with patient care coordinators, they create a communication channel that can be used to inform both coordinators and their patients.
Images by: edhar/©123RF.com, dolgachov/©123RF.com, alexraths/©123RF.com