Hemophilia: Accredo Simplifies Complex Care

Accredo website helps both patients living with bleeding disorders and their health care providers manage a complex disease.

Accredo has launched a new website to help patients and healthcare providers manage a complex disease that requires lifelong preventative care and treatments that can cost more than one million dollars per patient, per year.

Hemophilia.com provides the latest in patient and provider resources, including free downloadable guides for emergency care providers, coaches, educators, and caregivers. Also on the site is an educational video for children as well as materials describing what patients and caregivers need to know about bleeding disorders at every stage of life, from newborn to adulthood. 

This website is backed by the expertise of Accredo’s Bleeding Disorders Therapeutic Resource Center ®. Bleeding disorder-trained pharmacists and nurses in the TRC assist caregivers and patients learning about the different types of bleeding disorders, treatment options, and how to best manage their condition with pharmacologic and non-pharmacologic interventions. 

Our team also includes: 

  • Home care infusion nurses who meet patients in their home, work or school to complete infusions and educate patients on care and independence
  • Patient care associates who help ensure patients have the medication and supplies they need
  • Insurance representatives who obtain prior approval for factor orders and help explain insurance paperwork
  • Field patient advocates who connect patients with programs and services from Accredo and the local community

Every day, our experienced team of specialists are dedicated to providing counseling and care to patients and their families. Approximately one in 10,000 people in the U.S. are born with hemophilia or another form of a bleeding disorder, a rare genetic condition in which blood doesn’t clot normally, because it lacks sufficient blood-clotting protein.

Treatment of this disease, as well as public awareness, has come a long way. In the past, treatment was limited to blood clotting factors made from donated plasma. Before rigorous blood screening, approximately 10,000 people with hemophilia in the U.S. were infected with HIV. 

You may remember a young man named Ryan White, a boy with hemophilia, who was diagnosed with AIDS in 1984 following treatment with clotting factor. Little was known about AIDS at that time, and Ryan gained national attention as he fought a lengthy court case to regain admittance to his school, where officials, teachers, parents and students believed he could transmit HIV by casual contact. Sadly, Ryan died one month before his high school graduation.

Today, public awareness about hemophilia has improved and more treatments are available. Patients are experiencing fewer bleeding episodes, thanks to advances in prophylactic treatment. In addition, a new drug that was recently approved allows for subcutaneous rather than intravenous administration. Several gene therapies for hemophilia A and B are currently in the pipeline. 

Through Hemophilia.com and our TRC, our bleeding disorder-trained clinicians are leaders in providing and advancing quality care for those living with bleeding disorders. Once misunderstood and sometimes stigmatized, hemophilia patients now are empowered with information that can improve their lives and health.

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