High-touch care: How Accredo supports patients living with a rare disease

For 15 years, Janet Kohli, PharmD, has been a dedicated member of the Accredo Specialty Pharmacy team, working within its Advanced Pulmonary Conditions Therapeutic Resource Center (TRC). In this role, she helps patients who are living with advanced pulmonary conditions, such as pulmonary arterial hypertension (PAH), manage their diseases and treatment plans. Her work is hands-on and high touch, and she plays a critical role in guiding individuals throughout their health journeys – from educating them about their condition to helping them start treatment and remain on track with their medications. 

We sat down with Janet to talk about how she and Accredo Specialty Pharmacy support individuals living with PAH.

PAH is a rare and often misdiagnosed disease. What is PAH and how do you explain it to someone who isn’t familiar with it?

When I talk to patients about pulmonary arterial hypertension (PAH), I try to keep it straightforward. PAH is a rare, serious, and often progressive condition that affects the blood vessels in the lungs. When those vessels become narrow or stiff, the heart must work much harder to push blood through them. Over time, this extra strain can lead to heart failure and even death.

One of the biggest challenges is that PAH symptoms often look like other, more common conditions. Things like shortness of breath or fatigue can be easily mistaken for asthma or even a lack of physical activity. However, once a diagnosis of PAH is confirmed, the next step is to establish a treatment plan. 

What types of medications are used to treat patients with PAH? 

There are oral, inhaled, injectable, and infused medications available. Every patient has a different treatment plan depending on the patient’s risk factors, disease severity, and social determinants of health. Patients may require a single medication or a combination of medications as part of their treatment plan. Patients with advanced PAH usually receive continuous infusion therapy, which means they require medication to be infused in their body 24 hours a day, 7 days a week, 365 days a year. Even a small lapse in treatment could result in severe health consequences.   

As an Accredo pharmacist, what role do you play in caring for patients with PAH?

My job is to make sure patients fully understand how their therapy works, what to expect, and how to manage it safely. I answer questions about side effect management, drug interactions, and dosing, and I coordinate with Accredo nursing for medications that require nursing support. One of the great things about Accredo is that we have a team of more than 800 nurses who visit patients in their homes to provide care. In the case of PAH, oftentimes these nurses are alongside patients teaching them how to properly mix and administer their medications on their own. 

Image

Given the severity of the disease, and the complexity of infused treatments, how do you help put patients at ease with their treatment regimen?

The first steps matter so much. Many times, patients are suddenly facing a serious diagnosis and a complex treatment routine. So, I walk them through everything – their medications, side-effect expectations, device training, refill timing – in a way that feels manageable to them. I want them to feel like they’re not doing this alone, because they’re not. Through Accredo’s Advanced Pulmonary Conditions Therapeutic Resource Center, patients have access to an entire team of clinicians who specialize in PAH and understand the nuances of this disease.

Beyond pharmacists, what other Accredo team members support patients?

Patient care at Accredo is truly a team-based approach. I mentioned our pharmacists and nurses, but we also provide patients with access to social workers, patient access representatives, and patient care advocates. Patient access representatives help patients navigate insurance requirements, prior authorizations, and financial assistance programs, while patient care advocates provide ongoing support to help ensure that patients get their medication refills promptly.

Image

Our Accredo pharmacists and nurses also support patient care through their collaboration with the treating providers who prescribe the PAH medications. It’s not simply a case of Accredo receiving and filling a prescription. In cases involving more complex PAH medication treatment, our pharmacists and nurses often work with prescribers when doses need to be adjusted based on lab results, or when patients need to switch to another therapy to be sure we have a clear transition plan in place. They even work together to determine the appropriate location to initiate care, assessing whether patients can start their treatment at home or need to do so in a hospital.

In your role, you form close bonds with the patients you care for. Any particular example of a patient who deeply impacted you? 

There is one patient who will always stay with me. Over time, I became her primary pharmacist because her husband often needed extra support, so I stepped in to help her more closely. Over the course of nearly 10 years, we built a relationship that felt almost like family. I supported her and her husband through so many ups and downs – her struggles, her small victories, the way they both navigated such a difficult diagnosis together.

The people we care for leave a lasting impression. They stay with us as clinicians and shape how we care for every patient who comes after. 

Watch the video below to hear from a PAH patient about their experience with Accredo’s team of experts: