360° Support for Patients with Rare Diseases: A Reimbursement Hub Q&A

Rare Disease Day 2015 - Reimbursement Hub Q&A

360° Support for Patients with Rare Diseases: A Reimbursement Hub 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 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 second part of the series. Be sure to check out part 1 and part 3.

Jennifer Howard, Program Manager
Patient Solutions & Reimbursement
Memphis, TN

Q: Can you briefly describe your role at UBC?
A: I oversee all of the activities for a Reimbursement Hub and Patient Assistance Program dedicated to patients prescribed a medication for a congenital metabolic disease. My team helps patients navigate barriers to getting the medication covered. We also help patients reduce out-of-pocket expenses and inform them about available support programs.

Q: What are the top concerns of the patients you support and how do you address them?
A:
The biggest thing we hear is that before the drug we support came to the market they didn’t feel like there was any support. Now that the Hub is in place, patients say it’s nice to know that they have someone they can call. There’s also a lot of anxiety around not being able to get their next shipment of medication. My team ensures the medication arrives on time to the patient’s home or site of care. Whether that means authorizing a shipment to bridge a potential gap or working with the insurance company to make sure we have the proper coverage in place, we work tirelessly on behalf of our patients.

Q: How does your department work with other areas of UBC to support these patients?
A:
We interact daily with Accredo Specialty Pharmacy to get prescriptions out the door. There is a dedicated team for patients with rare diseases. It feels like an extended team even though they sit across the street.

Q: What unique challenges do patients with rare diseases face?
A:
These patients have so few options for treatment. The therapy I support changed people’s lives when it was approved. Previous treatments required a large number of pills, and dosing was hard because it was based on a patient’s body weight. This medication is easier to administer, which removes a lot of the burden on the patient and the caregiver. I think it takes some of the stress away so these patients can focus on living their lives.

Q: How are you partnering with the manufacturer to provide even better care for patients?
A:
We are moving from drug-specific support to a disease state support system. This will allow us to provide holistic care for patients. For example, for my patients, there are a range of dietary supplements that can help them lead fuller, happier lives. Adding additional support services is something these patients recognize and appreciate.