Zebra advocacy: 3 considerations for helping rare disease patients receive the best care possible

Many patients don’t know where to start when it comes to advocating for themselves and demanding the care they deserve.

This becomes even harder when a patient or caregiver is seeking care for a rare disease. For example, of the 7,000 known rare diseases, there are also countless other disorders and diagnoses that don’t yet have a name. Rare disease patients are commonly referred to as ‘zebras’ due to an old adage taught to medical students throughout their training to think simply and expect common conditions: “when you hear the sound of hooves, think horses, not zebras.” Unfortunately, this adage doesn’t hold true when diagnosing rare disease patients, making the need for advocacy even more prevalent. According to Global Genes, 50 percent of the people affected by a rare disease are children – the most vulnerable population, in need of a caregiver to advocate on their behalf. Furthermore, even if a patient or caregiver is persistent, it’s not uncommon for providers to lack education on the disease to provide the best diagnosis, which often leads to misdiagnoses and in some cases. The patient can leave the doctor’s office convincing himself/herself that the symptoms aren’t real. This can lead to reluctance to advocate, continuing a vicious cycle and increasing potential for misdiagnosis and lack of appropriate treatment.

This said, today’s pharma and healthcare marketers have the important task and unique opportunity to shake things up when it comes to equipping patients and providers with education, confidence and data. To avoid settling for a new normal– below are three considerations for rare disease patients, caregivers and providers when it comes to care and treatment:

Tracking Data
Many rare disease symptoms are nebulous which is why misdiagnoses are extremely common and the road to diagnosis is often very long. In fact, according to a study conducted by EURORDIS, 25 percent of people living with one of eight different rare diseases waited anywhere from five to 30 years from the time of initial symptoms to a confirmatory diagnosis. This is also part of the reason why in 33 percent of cases, diagnoses were unsatisfactory and 12.5 percent were found to be unacceptable.

One way that patients can help alleviate misdiagnoses and shorten the time it takes to be properly diagnosed is by taking advantage of their personal health data. Data has the understated power to tell a thorough story of how a patient is feeling and living their lives each day. By tracking symptoms actively and leveraging data from wearables and other smart technology, patients and caregivers are equipped with a multitude of data points, in contrast to the few a physician can gather in the timeframe of an appointment. This has the potential to speed up diagnosis and optimize care. Having this data on hand can help bridge the communication between patient/caregiver and HCP and fine-tune treatment plans for better outcomes.

Providing Education
In the rare disease arena, education is key. By delivering engaging, easy-to-digest and pertinent educational materials to providers and patients, marketers usher in a new way of communicating about rare diseases. These materials can be found in waiting rooms, but also in the form of advertisements, found on trusted forums and social media groups, and in the information given during advocacy and support group meetings. If a doctor doesn’t understand the complexities of rare disease symptoms, it’s likely that a patient will feel like their symptoms don’t apply to the conversation and are therefore moot. Similarly, if a patient doesn’t understand their rare disease well enough, it’s likely that they won’t feel empowered to ask their doctor important questions about treatment. Even the subtlest tweak to a treatment plan has the potential to change a patient’s quality of life. However, these direct, honest and confident conversations are not possible without educating both parties about the nuances and multifaceted nature of rare diseases. A large part of education is also removing the stigma from talking about rare disease outside of the doctor’s office. Once both parties are properly educated, doctors can be more empathetic and accurate and patients can feel like they are not helpless when it comes to the state of their own well-being.

Creating Community
Communities can empower both patients and caregivers in a variety of ways. Having a space, whether in-person or online via social media, where patients and caregivers can have thorough conversations about their personal experiences, opens the door for deep reflection on symptoms. Communities also provide a support network for patients and caregivers to collaborate and empathize with each other. In order to maximize time spent in a doctor’s office and ask the right questions, patients and caregivers deserve a community that can help educate through the exchange of trusted materials and resources. Community is also a vital cornerstone of advocacy. Many niche rare disease communities have come together to influence legislation and advocate for R&D by expressing one collective voice to enact change. Communities can inspire comradery, confidence and also improve accurate diagnoses to enhanced education and committed action.

Fifty percent of rare diseases do not have a disease-specific foundation – making the need to provide educational materials and inspire advocacy even more important. While tracking personal health data, preparing for open and honest conversations at the doctor, and being mindful can help speed up and streamline diagnosis, all of these factors can also help to build an informative support network for those living with rare diseases. With a wealth of information at their fingertips, patients and caregivers no longer need to feel deserted when it comes to advocating for their well-being and seeking the care and treatment that they not only deserve, but need.

By: Carina Whitridge, Director of Client Services at Cambridge BioMarketing

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