Making quality health care accessible for underserved populations.

Access to comprehensive, quality health care services is essential to the diagnosis, treatment, and improvement of care and quality of life for people living with blood disorders. Despite this need, there are disparities that affect the ability of underserved populations to access quality health care. The NHPCC is dedicated to improving access to care for the blood disorders community with a current focus on those populations that are most in need.

Based on results from the Barriers to Care Survey administered to HTCs in 2019, the NHPCC has identified the following populations as experiencing the most urgent need for improvement in access to care:

• The under-resourced (those living in rural areas, the elderly, and the uninsured or under-insured)
• Women and girls
• People with rare bleeding disorders

The survey also indicated that the most common barriers to care include:

• Lack of financial resources and health insurance
• Distance from the HTC and difficulty with transportation
• Insufficient coordination with emergency departments, local hospitals, and specialty providers with expertise in blood disorders
• Inadequate educational materials in English and Spanish

The NHPCC Access to Care Work Group
In its coordinating role, the NHPCC has created the Access to Care Work Group to identify, prioritize, and share programs and tools currently being used within the U.S. Hemophilia Treatment Center Network (USHTCN) to address these barriers to care for patients with blood disorders, particularly those who are most in need. The group’s goal is to coordinate national and regional activities that contribute to the uniformity of care, including outreach, within and outside the USHTCN.

The Access to Care Work Group is working to identify and gather information about practices HTCs have in place to address barriers to care, address workforce issues, and share best practices, tools, and tips throughout the network. Some of the areas the group is exploring include:

• Outreach clinics, satellite clinics, and telemedicine
• Assistance with transportation and meal vouchers
• Financial counseling
• Education to improve coordination of care with hospitals, providers, and specialists both within and outside of the HTC’s institution
• Protocols for diagnosis, care and treatment, referrals, and collaboration with related services
• Patient-friendly educational materials on disorders and treatment options in English and Spanish
• Access to genetic testing