Treating Hemophilia
and von Willebrand Disease

Hemophilia is an inherited blood clotting disorder caused by the absence or inactivity of an essential blood clotting protein called “factor.” A deficiency of specific clotting factors causes a breakdown in the chain of events that stop bleeding. If that factor is not available or replaced, there is not a way to stop the bleeding.

Contrary to popular belief, people with hemophilia do not bleed more or faster than people without hemophilia, but they do bleed longer. The blood's inability to form a stable clot can lead to episodes of prolonged bleeding, most commonly into joints, but also into muscle, soft tissue and vital organs such as the brain or stomach. Minor cuts and scrapes on the surface of the skin can usually be treated with pressure and a bandage.

Similar to hemophilia, von Willebrand disease (vWD) is also an inherited bleeding disorder. In vWD, you either have low levels of a certain protein in your blood, or the protein doesn't work the way it should. The protein is called von Willebrand factor, and it helps the blood clot.

vWD is more common and usually milder than hemophilia. In fact, vWD is the most common of all the inherited bleeding disorders. It occurs in about one out of every 100 to 1,000 people. vWD affects both males and females equally, while hemophilia mainly affects males.

CoramRx understands that having hemophilia or von Willebrand disease doesn't automatically mean that you have to put life on hold. When managing a bleeding disorder, the people, products and services that support you can make a big difference.

We combine the best and broadest range of homecare options available today to help you move forward in treatment and live life to its fullest. As one of the longest-serving home infusion and specialty pharmacy providers for bleeding disorder patients with more than 30 years of experience, CoramRx offers:

  • In-home training and education
  • 24/7 clinical support
  • Experienced hemophilia nurse educators
  • Consumer advocacy program
  • Peer to peer networking opportunities
  • Online resources at coramhemophilia.com
  • Spanish language services
  • Travel support from more than 80 local nursing/pharmacy service centers
    and over 60 infusion suites nationwide

Therapy Support & Medications

Today, with the appropriate treatment, patients can live a nearly normal lifespan, with a positive quality of life. Treatment is the replacement of factor. For some patients, regularly scheduled infusions of factor VIII or factor IX are given so the blood level does not go to zero. If an injury occurs, there is factor to help the bleeding stop. This can greatly help the risk of long-term damage from the bleed. It is best to give these preventive doses in the morning so that the factor is available during the patient's time of greatest activity.

For other patients, factor is given (or extra factor if they are regularly dosed) at the time of a bleed. There are several different factor products. Some are “plasma-derived” and made from donor plasma. Others are “recombinant” which means they are produced in a lab from plasma factor.

Most frequently prescribed medications for managing a bleeding disorder include*:

Your Partner in Therapeutic Success

CoramRx maximizes compliance, minimizes complications and helps patients achieve therapeutic success in the most cost-efficient and clinically effective way possible. One week prior to each prescription dispense, you will receive a refill reminder phone call. To help ensure success with your bleeding disorder therapy, your pharmacy department team member will ask a series of clinical monitoring questions related to: Compliance to prescribed therapy, drug side effects, hospitalization, change in medication profile, disease status and effectiveness of prescribed therapy.

Patient Resources

The organizations listed below offer a variety of services and resources for consumers and caregivers. Please note that some organizations may charge a fee for access to services. This listing is not an endorsement of these organizations, or information they may disseminate. We strongly suggest you discuss any information you receive from these organizations with a qualified professional before making any changes in your healthcare, insurance coverage or home care provider.

Coram Hemophilia Services — a leading national provider of home infusion and pharmacy services for more than 30 years. With more than 75 company-owned branch locations nationwide, and nearly 1,000 specialty pharmacists and home infusion nurses on staff, Coram patients have access to consistent quality care and localized support almost anywhere they travel.

Hemophilia Federation of America — a national, nonprofit advocacy organization that sponsors educational and fundraising programs, monitors actions of the government and industry, and promotes awareness of the bleeding disorders community.

Hemophilia Treatment Centers (HTCs) — offer comprehensive medical care to people with coagulation disorders. HTCs provide treatment, education and psychosocial support services for patients and their families.

National Hemophilia Foundation — dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research.

FDA: Disposing Unused Medication — government guidelines for disposing unused medicine. The Food and Drug Administration (FDA) worked with the White House Office of National Drug Control Policy (ONDCP) to develop the first consumer guidance for proper disposal of prescription drugs.


Learn More

  • To learn more about your options for managing hemophilia and CoramRx,
    please contact us.
  • To enroll as Hemophilia patient with CoramRx, please complete our Patient Enrollment Form.

 

*Please contact CoramRx about other therapies not listed here.