360° Support for Patients with Rare Diseases: A Site of Care Nursing Q&A

Rare Disease Day 2015 - Site of Care Nursing Q&A

360° Support for Patients with Rare Diseases: A Site of Care Nursing Q&A

On February 28, patient communities around the world will celebrate Rare Disease Day to raise awareness about rare diseases and their impact on patients’ lives.

At UBC, we provide services to thousands of patients with orphan or ultra-orphan conditions. In support of Rare Disease Day, we’ve asked a few of our employees how their work makes a difference in the lives of patients with rare diseases. This is the third part of the series. Be sure to check out part 1 and part 2.

Candis McVicker, RN, Clinical Program Manager
Site of Care Operations
Overland Park, KS

Q. Can you describe your role at UBC?
I serve as a clinical program manager within UBC’s Site of Care (SOC) Operations, where I am responsible for the implementation and operation of several SOC programs that target rare diseases. Currently, I oversee programs that target rare autoimmune and endocrine disorders. In my role, I focus on building strong client relationships and ensuring that all patients, especially those with rare diseases, receive high-touch nursing care.

Q. How do SOC services touch patients with rare diseases?
SOC services directly and indirectly touch patients who have been diagnosed with a rare disease. The internal SOC operations team works “behind the scenes” to coordinate the home-health visit with the nurse and patient. Our training team ensures that each nurse is educated on the drug and rare disease state before patient interaction. We also have a Network Management team that is responsible for contracting with our home-health agencies. Through this network, we can utilize a trained clinician within driving distance of more than 90% of the population of the United States. Our home-health nurses work directly with the patients and their caregivers to educate them on the drug, disease, and the drug administration process. Along with education, our nurses can also administer injectable drugs to patients.

Q. What unique challenges do patients with rare diseases face?
It’s important to understand that each patient population is unique, and each individual within that population will face different challenges during their therapeutic journey. However, I do believe there are two major challenges that many rare-disease patients will encounter. First, patients who have been diagnosed with a rare disease typically face a knowledge deficit regarding their disease. There is an insufficient amount of information available to these patients regarding treatment options and medications. Many patients are unaware of the resources and the services available to them. This knowledge barrier puts a lot of pressure and expectations on the physician and the nurse. They both must act as an educational and referral resource.

Secondly, rare-disease patients can face unique formulary and cost challenges. Many of the drugs that treat rare diseases are often very expensive. Patients may often find that their drug is not fully covered by their insurance — or not covered at all. The high cost can create a burden for the patient and possibly threaten their ability to have access to the best possible treatment. Typically, when SOC services are involved, they are integrated with a Reimbursement Hub. The Hub provides benefit investigations and patient assistance services such as alternate funding and copay cards in order to target the cost challenges. As the Hub assists with the cost burden, our SOC services can address the patient’s knowledge barrier and eliminate that burden.

Q. What benefits do SOC services for rare-disease patients provide?
SOC services for rare diseases provide advantages for both the patient and the manufacturer. The patient receives quality care and education from a dedicated, trained nurse in the comfort of their home. This decreases both the disease knowledge deficit and travel burden, and it often increases therapy adherence. The manufacturer gains a better understanding of the patient population’s needs and any adverse events associated with product use.

Q. How does patient adherence differ among patients with a rare disease vs. those without?
There are many factors that influence adherence besides the type of disease a patient has, such as demographics, therapy costs, and side effects. However, I believe adherence can be higher in patients with rare diseases. It’s true that these patients are subjected to more burdens and therapy complexities, but their quality of life — or even life expectancy — depends on the benefits provided by the drug they are taking.