Patients who need specialty pharmaceuticals face a number of challenges.
The work of pursuing and receiving the correct diagnosis may take months or years. Once a diagnosis is achieved, identifying the best treatment for each patient poses an additional challenge for the patient and providers.
Options may be limited. With each new attempt, the process of acquiring insurance approval, filling out paperwork, and ordering the correct dosages and forms of administration begins anew.
Hubs seek to improve a patient’s ability to access the specialty medications they need. Here’s how each step of Hub enrollment offers a chance to provide a better patient experience.
At the Start: Patient Challenges and Concerns
All patients seeking specialty medications have one thing in common: They have an unusual or rare condition for which unusual, rare or not-yet-developed treatments are their only options.
These patients live with the day-to-day work of managing an existing medical condition, and may have done so for years or decades prior to receiving a prescription for specialty pharmaceuticals.
In other words, patients who need these medications aren’t living burden-free at the start.
The underlying condition is often a driver for patients, who work with providers to find better treatments. Yet the weight of dealing with the condition limits patients’ ability to manage complex tasks — like the effort involved in obtaining the specialty medications they need.
Patients struggle to acquire and take specialty pharmaceuticals for several reasons. Among the most common are:
- Financial costs become unmanageable. Receiving a diagnosis and a prescription, battling insurance companies or seeking alternate coverages, communicating with pharmacies and delivery services, and learning how to use a new specialty medication all pose challenges. To meet each challenge, patients may need to take time away from work or family. They may need to travel long distances. All of these challenges raise the financial cost of specialized medical situations and can lead to patient dropout, writes David B. Fogel in an article in Contemporary Clinical Trials Communications.
- Patients don’t understand the information they receive. Even when patients have a reasonable understanding of their own condition, they often lack the scientific context to understand related topics, Fogel notes. A 2013 study by The Center for Information and Study on Clinical Research Participation (CISCRP) found that patients were more likely to give up on specialized treatment if they didn’t understand the consent forms they were asked to sign.
- Travel creates additional burdens. When patients must travel to drop off paperwork, to pick up medication, to see multiple providers or to deal with other challenges, they are more likely to drop out of medical care, writes Fogel. Some patients don’t have access to reliable transportation, while others hesitate making long trips.
- Many patients already experience high anxiety and stress levels. The CISCRP study found that patients are more likely to abandon medical care if they’re already experiencing high anxiety, high stress or a lack of self-confidence. Acquiring specialty medication may be one stressor too many for these patients, who may choose to quit trying rather than further burdening themselves and their families.
When patients struggle to get the specialty medications they need, patients aren’t the only ones who suffer. Families too carry the weight of their loved one’s stress and medical needs.
Pharmaceutical researchers also pay a price: When patients with rare conditions don’t use available medications, researchers have fewer data sources to understand how those medications affect rare diseases. With less data available, these researchers have fewer chances to experience new insights or breakthroughs.
Hub Enrollment: Small Step, Big Opportunities
Hubs offer a way to reduce patient overload while improving communication and connections between patients and the providers who play a role in the prescribing and dispensing process. They do so by removing barriers between a drug’s source and the patient, so that patients receive medications more easily.
The goal of the Hub is to take patients easily from the early stages of their condition to having a drug in hand. Questions the Hub can answer include:
- Is the patient’s prescription written correctly?
- Did the patient complete their enrollment? What information is missing?
- Was a prior authorization denied? Are insurers and other payers doing their jobs?
- Does the patient have adequate insurance coverage? If not, what other sources might help offset the cost of treatment?
- Did the patient fail to show up for an appointment or turn in paperwork?
- Are delivery services getting medication into the patient’s hands at the right times?
- Do patients have the information they need to use their medications correctly and manage risk?
- Is the patient taking their medication as prescribed?
Each of these questions represents a potential challenge for a patient — one that may result in the patient failing to receive the proper care. As the patient’s Hub participation addresses each question, the proper party can step in to resolve the issue. For instance, the Hub may prompt a practice manager to reach out if enrollment is incomplete or to appeal a prior authorization request denied by an insurer.
The ability to respond promptly to enrollment challenges is crucial for patient care. Patients with rare conditions, who have already faced multiple challenges, may be more sensitive to any additional setbacks, seeing them as insurmountable.
One such setback is having poor interactions with providers, insurers or other parties responsible for part of the journey, from prescription to taking medication. Lack of help in challenging prior authorization denials or securing coverage for a drug can prevent patients from receiving care. When patients are enrolled in the Hub, teams have an opportunity to spot issues and reach out before patient frustration leads to abandonment of the process — or a dire medical situation.
When patients don’t have to worry about how they’re receiving their medications, they can use their energy and attention to focus on taking the medication as prescribed, recording effects and symptoms, and participating in the lab tests and other monitoring tasks involved in their healthcare.
Smoothing the Way Forward
Simplifying medication delivery for patients begins with introducing patients to the Hub. Through that Hub, patients can take care of several different tasks in one environment.
A Hub also allows patients to connect with a number of parties in one location. Hub use connects patients to practice managers, drug manufacturers, distributors, delivery services, insurance company representatives, educators, data managers and sources of financial support, all in one place. In this way, the Hub benefits these stakeholders as well by increasing communication and connections with patients.
While the patient may be reasonably well-informed about their condition, they may be new to the process of obtaining a particular medication, especially if that medication is new or is tailored to their specific needs. The Hub improves patient pull-through and adherence by removing or reducing barriers to acquiring and taking needed medication, resulting in better outcomes for both patients and trial teams.
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