US Healthcare Costs Average 25 Times Higher for Hemophilia B

US Healthcare Costs Average 25 Times Higher for Hemophilia B
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Healthcare costs can be 25 times higher for hemophilia B patients than for individuals who do not have a bleeding disorder, according to a recent study.

These findings reflect both direct costs of hemophilia treatment and a greater need for other healthcare resources, researchers noted.

The study, “Health care resource utilization and cost burden of hemophilia B in the United States,” was published in the journal Blood Advances.

Although hemophilia B is a rare disorder, affecting about 6,000 people — mostly men — in the U.S., it carries a heavy social and financial burden.

Those living with the disorder can find themselves frequently paying for medications, doctor visits, hospitalizations, and medical and surgical procedures. Other indirect costs include lost days of work and lack of productivity while at work, as well as disabilities resulting from recurrent bleeds and joint damage.

Few studies, however, have quantified the economic burden of hemophilia B in the U.S., and those that do often do not report separate results based on disease severity.

To account for this, a team of researchers from the University of Colorado School of Medicine along with colleagues at uniQure and the Analysis Group compared medical claims (from June 2011 to February 2019) made by hemophilia B patients in the U.S. to those of age- and sex-matched individuals who did not have any blood clotting disorder and served as controls.

These claims provided information on the number and kind of medical procedures needed, prescriptions, and involved costs.

Investigators identified a total of 454 unambiguous cases of hemophilia B, meaning individuals who received at least two diagnoses of the disease on separate days, and who had two years’ worth of continuous records.

Patients were grouped by disease severity, which was determined based on the frequency of factor IX (FIX) infusions. Of note, FIX is the blood clotting protein that is missing in patients with hemophilia B and that is provided to treat or prevent bleeds in the form of a replacement therapy.

Four categories of disease severity were developed: mild (no FIX claims or hemorrhage); moderate (one to three FIX claims per year and no bleeding); moderate-severe (four to five FIX claims, or less than three FIX claims and at least one hemorrhage per year); and severe (at least six FIX claims per year).

On average, people with hemophilia B had significantly more co-occurring illnesses than controls. For example, 16.7% of hemophilia B patients also had hepatitis C, compared to 0.4% of individuals who did not have any bleeding disorder.

Those with hemophilia B, regardless of severity, used healthcare resources more often than controls. These included inpatient visits, trips to the emergency department, and outpatient visits. Patients with hemophilia B also visited specialists, such as hematologists and orthopedists, much more frequently than individuals who did not have blood clotting disorders.

Healthcare costs were higher for hemophilia B patients than for controls in every category. On average, total healthcare costs were estimated to be around 25 times higher for hemophilia B patients compared to controls on an annual basis ($201,635 vs. $7,879).

Costs also rose with disease severity. Patients with mild cases had medical bills that averaged $80,811 per year, while those with moderate hemophilia B had an average of $137,455 in medical bills during the same period of time. Healthcare costs rose to $251,619 for those with moderate-severe hemophilia B, and to approximately $632,088 per year for those with severe cases.

To the researchers’ knowledge, this was the first study to stratify healthcare resource use by clinical severity, which could be useful in future studies exploring the burden of hemophilia B and its unmet medical needs.

“The findings of this study highlight the substantial burden of illness associated with hemophilia B,” they wrote.

“Moreover, results from this study could provide useful inputs for cost-effectiveness analyses in hemophilia B to account for potential cost-offset associated with novel treatment options such as gene therapy,” the investigators concluded.

Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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Joana holds a BSc in Biology, a MSc in Evolutionary and Developmental Biology and a PhD in Biomedical Sciences from Universidade de Lisboa, Portugal. Her work has been focused on the impact of non-canonical Wnt signaling in the collective behavior of endothelial cells — cells that made up the lining of blood vessels — found in the umbilical cord of newborns.
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Forest Ray received his PhD in systems biology from Columbia University, where he developed tools to match drug side effects to other diseases. He has since worked as a journalist and science writer, covering topics from rare diseases to the intersection between environmental science and social justice. He currently lives in Long Beach, California.
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