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Building Bridges to Support Patients’ Care
December 12, 2019
Alnylam Pharmaceuticals
Supporting patients and their caregivers by facilitating access to innovative treatments is at the core of our Patient Access Philosophy. Everyone at Alnylam works to support access in some capacity. However, we refer to those people whose efforts directly impact access among patients, payers, regulators or governments as “the Collaborators.” Alnylam’s Patient Services team in particular works with patients in many different ways to help them navigate the evolving complexities of today’s healthcare system.
In this Q&A, Kendra Lebwohl, our Vice President of Patient Services and Channel, shares her thoughts on the importance of creating holistic support programs for people who have recently been diagnosed with rare diseases, and on the different people who work together to put these programs into action.
What roles and responsibilities does your work involve?
I have the privilege of leading Alnylam’s Patient Services team, which is a really talented and passionate group of professionals. Our work begins when a prescriber and patient decide to start treatment of the patient with our medicine. The Patient Services team is focused on clearing barriers and facilitating discussions between patients and their caregivers, healthcare providers, and insurance companies, to help appropriate patients initiate and stay on therapy. It’s been an incredibly rewarding experience to help build this team here at Alnylam and bring together people committed to helping our patients overcome challenges they might face once prescribed one of our medicines.
Who makes up your team?
Our team is made up of Case Managers, who work with patients, healthcare providers and payers to help initiate treatment and provide patients and their caregivers with ongoing support; Patient Education Liaisons (PELs), who educate patients, their families and caregivers and individuals at risk for hATTR amyloidosis with polyneuropathy or acute hepatic porphyria (AHP) on these diseases and our approved therapies; Field Reimbursement Directors (FRDs), who educate healthcare providers about coverage, coding and payment dynamics for our approved therapies, and our Channel Director who ensures product is available through the U.S. distribution channel. Each of these team members supports a different phase of a patient’s journey.
Is there a story of your team helping out that sticks out in your mind as evidence of the team’s commitment?
At Alnylam, we’re delivering an entirely new class of medicines to patients, and to me, “delivering” is what we’re all about.
I’ll never forget the time we helped a patient get access to medicine during a lengthy road trip with family. This patient enjoyed traveling in the family’s RV and really did not want the infusions to prevent them from taking a road trip or slowing them down! We couldn’t promise that we could make it happen, but our Case Manager was able to work closely with the patient to see what infusion options were available on the road, and ultimately the pharmacy ensured the medicine could be delivered to and administered directly in the RV with the help of a home health nurse.
It took close collaboration between the Case Manager, patient, nurse, pharmacy, and the insurance company, but we were able to make the therapy fit the patient’s life and not the other way around. This was a huge win for everyone involved. It’s stories like these, where we work together on creative solutions to support patients, that make me excited to come to work every day.
What was the rationale behind creating a support program like Alnylam Assist®?
Navigating the U.S. healthcare system alone can be extremely burdensome and challenging. With Alnylam Assist, we set out to create a program that brings together patients, caregivers, and their families with healthcare providers and insurance companies, and importantly with our team there to lend that stabilizing and supportive arm throughout the journey. I like to think of it as a triangle where each group makes up a side (patient and caregivers, healthcare providers and payors), and we are the collaborators that bring all sides together to help patients get access to therapy more expeditiously and efficiently. [Our goal is to take the hassle and frustration out of the access process, in an empathetic manner, so patients can focus on their health.]
Why is it important to create holistic support programs to support patients from diagnosis through care?
The benefits to patients are many, and it’s a tremendous learning opportunity for us, too. Programs like these are a porthole through which you can see how medicines are actually being used by people in the real world. It’s the things we learn by watching that tell us where to navigate next or how to refine and hone our programs to do an even better job meeting patients' needs in the future.
How do you build a successful patient support program?
Creating a smooth experience for our patients, with each patient feeling heard and respected, really comes down to bringing the right people together. It’s like a relay race where each person must pass the baton to their colleague for everything to work seamlessly.
Our goal for Alnylam Assist is to keep our interactions with patients organic and unscripted, and we look for Case Managers who can take in a vast amount of information and bring other team members together to solve problems on the fly. We seek out people who want to devote their professional lives to helping people living with serious, debilitating diseases.
When you combine the right people with incredibly thoughtful and well-planned programs, you have a team rowing in the same direction and the whole program works. Of course, there have been times when we don’t get it right on the first try, but that’s why it’s so important to constantly listen and rethink our programs to make sure we’re giving people the best experience possible.
What is the most gratifying part of the team’s work?
One thing that is really gratifying for our Case Managers and PELs is to see the direct impact of their work on patients and their families. They’ll often receive ‘thank you’ emails, letters and phone calls from the people they help who say how grateful they are for their guidance in what can be a very complicated and confusing process. I’ve seen members of the team get emotional and it really shows how invested they are in what they do.
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