Gary Hopkins

For 6 years, Lanh Dang, PharmD, BCACP, a clinical ambulatory care pharmacist in the University of Florida Health (UF Health) specialty pharmacy in Jacksonville, was a constant and reassuring presence in Gwendell Snead’s life.

Snead, a 63-year-old patient with Crohn disease, has dealt with the social isolation associated with the debilitating condition.

“She’s my angel,” Snead said of Dang. “[Dang is] always there when I need her. If I’m feeling down, she’ll pick me up and fill me in on what I need to know and what I need to do. I would be lost if it wasn’t for her.”

Snead began having symptoms associated with Crohn disease when she was in her late 20s. Over time, the flare-ups got worse, resulting in frequent hospitalizations, preventing her from working for long periods of time, and keeping her confined to her home. Snead was not able to keep up with many of her favorite activities, such as attending church and going on outings with family and friends.

She met Dang during her initial visit to UF Health Gastroenterology–Jacksonville, an academic medical center within the UF Health system. Dang was part of the clinical team that evaluated Snead, developed a treatment plan for her, and provided follow-up care.

“I remember her saying in that first meeting, ‘If you ever need anything, just pick up the phone and call me.’ I knew right away that Lanh was the one I wanted to work with me,” Snead said.

Previously, 3 drug therapies for Crohn disease had failed to alleviate Snead’s symptoms. Dang and the UF Health team prescribed ustekinumab (Stelara; Janssen Biotech), an injectable treatment for Crohn disease, to be administered every 8 weeks. When that proved ineffective and the frequency had to be changed to every 4 weeks, Snead’s insurance company questioned the above-average dosage. Dang, working with Snead’s gastroenterology specialist, appealed successfully on Snead’s behalf, and the insurer agreed to keep paying for the higher dosage. The drug’s average wholesale price is $30,000 per pen.

On another occasion, when Snead confused the ustekinumab shot with another medication she was taking and injected ustekinumab too soon, Snead called Dang for help. Dang quickly connected with Snead’s physician and recommended an adjustment to the dosage to get her back on schedule.

Dang and the rest of the specialty pharmacy team at the clinic are an integral part of Snead’s care team, providing support by consulting with Snead’s providers on drug therapies, making sure she has all the information she needs about their medications, helping coordinate refills, guiding her through the insurance maze, and providing co-pay assistance and information when needed.

According to Snead, who says her condition has stabilized, having Dang on her care team has been critical to her recovery. “From the day I met her, she’s been wonderful,” Snead said. “I just thank God that I have her.”

Integrating Specialty Pharmacy and the Patient Journey

Patients who receive a diagnosis of a chronic, complex disease or condition that requires a specialty medication often face specific challenges: how to access the drug and how to get the help needed to manage therapy.

These medications are often expensive and typically require a high degree of ongoing patient assessment or case management to optimize therapy and prevent adverse effects, which can be resource-intensive for pharmacy care teams. In some cases, manufacturers and pharmacy benefit managers
limit distribution of specialty drugs to a handful of specialty pharmacies or a single large commercial specialty pharmacy, requiring patients to go outside health systems to obtain treatment. This creates an additional care transition for patients, which may lead to delays or interruptions. For patients with a potentially terminal diagnosis who need to start their therapy in a timely manner, any delay
in accessing their medication can be especially devastating, both emotionally and physically.

Specialty pharmacies were created to coordinate care for patients on these complex therapies, beginning with transplant patients at academic medical centers, according to Burnis Breland, PharmD, MS, FASHP. Breland, a longtime pharmacy educator and practitioner, is a regional account director with Acentrus Specialty, a national network of 133 health systems and large hospitals committed to providing specialty pharmacy care for patients.

With Acentrus, Breland is a strong advocate for integrating specialty pharmacy within health systems and hospitals. The specialty pharmacy space is dominated by large commercial specialty pharmacies and pharmacy benefit managers,
which control approximately 87% of the specialty pharmaceutical prescription revenue market. Health system specialty pharmacies (HSSPs) and other noncommercial specialty pharmacies make up the remaining 13%.

“The specialty patient’s journey is a particularly challenging one. Integrated specialty pharmacies help health systems and hospitals meet these challenges so they can give total care to patients within their system and minimize the stress and concerns that these patients go through,” Breland said. “Working collaboratively with providers, specialty pharmacies within a health system or hospital can help ensure the best quality care, the best clinical outcomes, and the best patient satisfaction. This clinical patient management, including interaction between the specialty pharmacists and the specialty clinic providers, cannot be provided by pharmacists and pharmacies outside the health system who lack the same level of direct patient interaction as well as access to the patient’s medical records.”

Specialty pharmacy leaders from 4 major academic centers across the country—UAB Medicine in Birmingham, Alabama; UCSF Medical Center in San Francisco, California; UF Health Jacksonville in Florida; and UNC Medical Center in Chapel Hill, North Carolina—echoed Breland’s sentiments during a panel discussion at the Acentrus Specialty Pharmacy conference in San Diego, California, in April 2022. The panel members described how being included in the clinical care teams at their facilities allows them to anticipate and proactively address care coordination challenges patients may face.

During the discussion, the representatives from each academic center agreed that, as part of the care teams, specialty pharmacists can view information available in patients’ electronic health record (EHR) to better understand their condition and progress.

They can monitor for adverse interactions between patients’ specialty medications and any other drugs they may be taking, manage adverse events, get timely prior authorizations from insurers so patients can start therapies quickly, handle appeals when necessary, and help patients obtain financial assistance to cover co-pays. Additionally, by documenting each step they take in the EHR, pharmacists update the entire care team on their patients’ progress from a pharmacy perspective.

Real-World Data to Improve Patient Outcomes

Advocates for HSSPs say that in addition to promoting better clinical management of patients, they also offer access to meaningful real-world data that improve treatment outcomes.

Unlike large commercial specialty pharmacies, which typically only have access to claims and pharmacy dispensing data, specialty pharmacies within a health system or hospital can access all the clinical data contained in the patient’s EHR.

“It’s impossible to perform meaningful outcomes studies from claims data and pharmacy dispensing data,” said Tom Renshaw, MBA, RPh, senior director of business solutions at Acentrus. “You need the full continuum-of-care data, the kind of robust clinical data you get from the EHR, to do this kind of work. The real-world evidence that comes from the unstructured EHR data, including the provider’s clinical notes, gives you a much deeper understanding of the patient journey than you can get from traditional data sources.”

HSSPs are already using their access to EHR data to connect the dots between the care they provide and patient outcomes. For example, an evaluation by Acentrus of clinical EHR data at 12 hospitals found that approximately 50% of patients with HER2-negative breast cancer who met the National Cancer Institute guidelines to receive palbociclib (Ibrance; Pfizer) or another drug in the cyclin-dependent kinase 4/6 inhibitor class were not being given the medication.

“When we went out and educated the providers and the specialty pharmacists about the results of our study, many of these patients were subsequently put on the medication,” Renshaw said. “This kind of retroactive analysis is a great way to improve care and ensure that guidelines are being followed.”

Additionally, there is another major initiative under way to use EHR data to
measure, understand, and benchmark patient outcomes. In August 2021, Acentrus, in conjunction with Loopback Analytics, formed the Therapy Specific Outcomes Coalition, a collaborative, multisystem group of the nation’s leading HSSPs.

This coalition is designed to develop therapy-specific outcomes and identify best practices through clinical benchmarking between health systems on a standard platform. The coalition is actively identifying key outcome measures for 8 disease states specific to the specialty pharmacy space, including cystic fibrosis, multiple sclerosis, and oncology.

“The problem for many health systems is that [although] they may understand the effectiveness of a therapy on a single patient, they don’t have a clear understanding of its effectiveness on a patient population level. They don’t have the ability to connect the dots,” said Neesha Thakkar, PharmD, BCPS, a regional account director at Acentrus who is helping lead the coalition.

Therapy-specific dynamic dashboards will allow health systems to understand their clinical outcomes, benchmark against other health systems, and identify best practices.

In addition to helping health systems optimize patient care, the coalition aims to partner with manufacturers and payers to better understand how specialty drugs are being used and how effective they are.

“Our overarching goal is to demonstrate that patients treated in an integrated specialty pharmacy have superior clinical outcomes,” Thakkar said. “Ultimately, and most importantly, it’s the patient who should benefit.”

 is a principal with Blanco + Hopkins & Associates LLC, a health care public affairs firm based in La Canada, California.

Fein AJ. The 2022 economic report on U.S. pharmacies and pharmacy benefit managers. Drug Channels Institute. 2022. Accessed June 18, 2022. https://drugchannelsinstitute.com/ products/industry_report/pharmacy

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