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Specialty Drugs and Patients With Rare Diseases

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What You Need to Know

  • Some patients use champagne-level drugs when beer-budget generics might work just as well.
  • Other patients may need expensive drugs to cope with unusual, complex conditions.
  • The author says the patients using those drugs need extra pharmacist support.

Thirty million Americans living with a range of 7,000 rare or orphan diseases require a high level of therapy adherence support, in large part because of the challenges they face if they fail to take the right drugs at the right time: higher medical needs, missed work, early retirement and reliance on caregivers.

A growing number of health insurance agents recognize the value of innovative and effective strategies to address the challenges of managing specialty drugs, which treat complex, chronic or rare conditions and require special administration or handling.

Significantly, the cost for one specialty medication used on a chronic basis is three times the average annual income of Medicare patients. That places specialty medications out of reach for many older adults, or forces them to choose between taking the medicines they need, or buying groceries and paying the rent.

Specialty pharmacies represent a reliable distribution channel for high-cost medications. They offer convenience to the patient and lower costs, while maximizing insurance reimbursements from companies that cover the drugs used.

Patient-First Specialty Pharmacists

Specialty pharmacists focus on providing high-cost, high-touch therapies for patients with chronic, complex diseases. When these professionals take a patient-first approach, they are able to cultivate a deeper relationship with patients, offering personalized information, care insights, and greater support.

With a patient-first model, every decision is about what is best for the patient.

Take for example, a young patient with a rare condition who started a new medication. She was concerned about the unfamiliar side effects. The specialty pharmacist spent 40 minutes listening to all of her concerns and answering all of her questions, rather than rattling off the medication’s usual talking points.

Together, the pharmacist and the patient came up with a plan that involved the patient, pharmacist and physician discussing the new medication in more depth and getting a second opinion. By the end of this process, the patient felt more comfortable with the new medication and was able to remain compliant.

Consider how this contrasts with a retail chain pharmacy, where the focus is more on daily quotas than on comforting patients who are experiencing a difficult time in their lives.

In many cases, specialty pharmacists become almost a part of the patient’s family, listening to and sharing personal stories and developing the kind of relationships that uplift the pharmacist and the patient. This family environment can have a very positive impact on patients.

Health insurance agents should consider patient-first specialty pharmacies the new industry game-changer — and an effective way to cut a plan’s costs without compromising quality for specialty patients.

The Impact of Specialty Drugs

Currently, specialty drugs account for about 17% of the average employer’s overall pharmacy costs.

Experts predict that specialty drug costs will increase annually 21% to 24% over the next few years. In fact, specialty rare diseases have led to substantial direct and indirect economic burdens for the patient, unpaid family caregivers and U.S. health system.

In the United States, a rare disease is defined as a condition that affects fewer than 200,000 people, with the total number of rare disease patients estimated to be 25 million to 30 million. While these diseases may be rare, the total number of people affected is large.

Because most individuals living with rare disease are between the ages of 18 and 65, commercial payers bear the largest share of the medical cost, while employers pay for significant productivity losses associated with absenteeism and presenteeism.

This includes productivity losses of $135 billion tied to adults with rare disease whose disease progression and diagnoses require time away from the workplace. For these reasons, a patient-first approach is critical.

Why Patient-First Works

Patient-first models deliver customized care coordination and telehealth solutions as an added layer that fosters discussion between the patient and pharmacist. This leads to a better understanding of the patient’s needs, focuses on the drug’s impact and monitors the patient’s overall health. By incorporating assessments and predetermined touch points each month, the care team is able to stay ahead of side effects and capture real-world evidence around the therapy, condition and patient’s well-being.

Patient-first care is effective because it includes targeted programs and services that deliver specialized expertise that goes well beyond the scope of capabilities provided by traditional, legacy care organizations that are simply built for scale.

In a world of shrinking options and technology, health insurance agents can highlight an approach that delivers the “human touch.” In fact, too often patients experience the retail pharmacy approach in which they are treated more as a daily quota, and not as someone facing an enormous life challenge.

This is where specialty pharmacists can play a significant role for patients and caregivers by providing an elevated level of customized care, helping caregivers optimize medication adherence, manage side effects and ensure that the patient feels heard to achieve the best possible quality of life and outcome.

Addressing Non-Clinical Issues

A patient-first approach prioritizes the needs of each patient, helping them and continually supporting them from day one and for their entire patient journey

Patient-first specialty pharmacists have gained in-depth knowledge on a range of rare diseases, allowing them to effectively collaborate with caregivers and patients. This enables physicians and specialists to focus more of their time on efficiently identifying appropriate therapies and developing long-term care plans. In turn, specialists treating these patients appreciate the additional insight, enhanced level of treatment and focus on streamlining communications.

Enlisting the help of a patient management organization that specializes in patient-first care coordination empowers healthcare professionals to focus on the patient experience through customized programs, services and specialized expertise that meets the needs of patients with rare diseases.

This added layer of disease-specific expertise also enables pharmacists to increase the caregiver’s understanding of the disease, which can help to further engage the patient in their treatment and promote optimal outcomes.

Ultimately, a patient-first approach offers a new strategy that health insurance agents can offer clients. Patient-first engages the entire care team to keep the patient’s overall health in mind with every decision, large or small, and leads to improved overall health and reduced economic burden.


Brian Salke (Photo: Optime Care)Brandon Salke, Pharm.D., is the pharmacist-in-charge at Optime Care, a specialty pharmacy.