How a Leading Specialty Pharmacy Delivers Better Outcomes
Transforming BLEEDING DISORDERS Care
Many patients rely on preventative and on-demand factor concentrate therapies to stay ahead of bleeds. When managed effectively, these treatments can reduce bleeding related joint damage, minimize disruptions to daily life, and help avoid costly complications. Ensuring patients have timely access to factor concentrate isn’t just good clinical practice—it’s a safeguard against emergencies. When the correct dose is available at the right time, and patients have been adequately trained to self-administer, they can avoid unnecessary ER visits, reduce overall healthcare utilization, and live confidently.
For patients living with bleeding disorders, every day is a delicate balance. A simple bump or fall can lead to painful bleeding episodes, missed school days, or may require hospitalization. Managing this rare and complex condition isn’t just about treatment—it’s about preserving quality of life.
Overview
A Collaborative Model That Puts Patients First
In 2018, a Shields partner health system’s specialty pharmacy launched an innovative, interdisciplinary care model for bleeding disorders patients in collaboration with their Hemophilia Treatment Center (HTC), which adopted a new approach to supporting them.
This wasn’t just about medication. It was about building a care ecosystem where pharmacists, nurses, prescribers, care teams, and financial support liaisons worked with patients to deliver personalized, high-touch support at every step.
From the moment a patient received a diagnosis, the team assessed disease severity, confirmed treatment protocols, and selected the right factor potencies to meet individual needs while complying with payer-specific requirements. They ensured patients received proper instruction on how to self-administer factor products in the home, provided timely access to medications, and proactively managed acute bleeds and joint pain before they escalated.
Behind the scenes, they tracked critical metrics like acute bleeding events and healthcare utilization to reduce costs, prevent complications, and improve outcomes. Every data point told a story of fewer ER visits, less pain, and more time participating in and enjoying life events.
Through a seamless partnership between leading health system’s specialty pharmacy and its HTC, patients with bleeding disorders are experiencing real, measurable improvements in their health and lives.
By ensuring patients have an adequate home supply of factor concentrate, the team helps prevent acute bleeding events, turning potential emergencies into manageable moments. This proactive approach reduces complications, keeps patients out of the hospital, and minimizes unexpected care's emotional and financial toll.
A Model That Delivers More Than Medicine
The ripple effects are apparent. Pain and absenteeism are significantly reduced, often tied directly to bleed frequency and severity. Patients miss fewer days of work or school, report less discomfort, and gain more control over their condition.
This isn’t just a clinical success; it’s a blueprint for compassionate, data-driven care that puts patients at the center. For those living with bleeding disorders, it’s a step toward a life with fewer limitations and more possibilities.
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Patients with bleeding Disorders evaluated
29
1.3 ABR
most patients experiencing fewer than two bleeds per year1
Unplanned Emergency Room Visit2
1 (3.4%)
Reported Absenteeism
10%
Result
Result
Result
With a mean variance of only 2%, far below the industry standard of ±10%
the model proves that thoughtful dispensing can reduce waste without compromising care.
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Overview
Reimagining BLEEDING DISORDERS Care
Behind every data point is a person—a child eager to play without fear, a parent hoping for fewer missed workdays, or a patient longing for relief from chronic pain. This partner specialty pharmacy’s integrated bleeding disorders care model reveals how powerful and thoughtfully coordinated care can be.
Real Impact, Real Lives
The Numbers Tell a Story
Between January 2020 and April 2024, 29 individuals, including adults and children living with bleeding disorders such as Hemophilia A and B, acquired Hemophilia, and von Willebrand disease, were evaluated after receiving at least 1 year of care through the specialty pharmacy. Each patient’s journey was unique, but the outcomes shared a common theme: better health, fewer disruptions, and greater peace of mind.
Two-thirds of these patients received prophylactic treatment, helping to prevent bleeds. The rest used on-demand factor concentrate to manage episodic bleeding. The result? An Annualized Bleed Rate (ABR) of just 1.3, with most patients experiencing fewer than two bleeds per year—well below the Shields benchmark of fewer than four bleeds annually, a remarkable achievement in this population.1
Just 10% of individuals in this population reported absenteeism, far lower than the <60% benchmark, with missed activities ranging from 1 to 6 days.2 That means more time in classrooms, at work, and with family. When bleeds did occur, 92% of patients had factor on hand and were ready to treat the bleed, preventing complications and avoiding emergency care.
The pharmacy’s precision in dispensing medication was equally impressive, with a variance percentage of just 2%, signaling minimal waste of high-cost medication. Secondary outcomes told the same hopeful story: only one unplanned emergency room visit—far below the Shields benchmark of less than 10—and average pain scores of 1 out of 10, demonstrating how well the model supported patients in staying comfortable and in control.2
This isn’t just a success story in numbers—it’s a testament to what happens when care is coordinated, compassionate, and deeply personalized.
Behind the scenes
The pharmacy’s precision is just as impactful.
1 World Federation of Hemophilia. World Bleeding Disorders Registry 2023 Data Report. Montréal (QC): World Federation of Hemophilia; March 2024. Available from: https://www1.wfh.org/publications/files/pdf-2452.pdf. Accessed December 1, 2025.
2 Cutter S, Molter D, Dunn S, et al. Impact of mild to severe hemophilia on education and work by US men, women, and caregivers of children with hemophilia B: The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study. Eur J Haematol. 2017;98 Suppl 86:18-24. doi:10.1111/ejh.12851 van Balen EC, Hassan S, Smit C, et al. Socioeconomic participation of persons with hemophilia: Results from the sixth hemophilia in the Netherlands study. Res Pract Thromb Haemost. 2022;6(6):e12741. Published 2022 Aug 26. doi:10.1002/rth2.12741
Eligibility: Adult and pediatric patients from a HTC associated with an academic medical center enrolled in specialty pharmacy program for one year or more with diagnoses of mild, moderate, or severe hemophilia A, hemophilia B, acquired hemophilia, or von Willebrand disease types 1, 2 or 3. Patients receiving desmopressin or antifibrinolytic therapy were excluded.