Hemophilia of North Carolina

Since 1977, serving the people of North Carolina
affected by bleeding disorders.

260 Town Hall Dr., Suite A, Morrisville, NC 27560

Unfamiliar names and terms?

It’s easy to get confused,
but it’s important to know

who’s who and what’s what.

*Special note

As a member of the bleeding disorders community you should be aware that pharmaceutical corporations and home care providers are profit-based organizations. They will compete for your business. Always consult with your hemophilia treatment center (HTC) or hematologist regarding pharmaceutical product selection. There are no “generic brands” of factor replacement products. Likewise consult with your HTC or hematologist when selecting a home care provider, especially if you need in-home nursing or infusion support.

Hemophilia of North Carolina (HNC) does not endorse any treatment products, manufacturers, home care services or individual medical providers. The companies and products included in this document are listed as a public service only. Listing is based on generally available information at the time of publication. Any inclusion or omission should not be interpreted as an endorsement or absence thereof.

HNC does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. Dose schedules and other treatment regimens are continually revised and new side-effects recognized. Information listed here is provided for general reference only, and does not replace the advice of a medical advisor and/or product insert information. Any treatment must be designed according to the needs of the individual and the resources available.

A Basic Guide for People with Bleeding Disorders

Have you, or someone in your family, been recently diagnosed with hemophilia, von Willebrand disease or other bleeding disorder?

Did you know that there are many organizations, corporations and service providers that want to help you?

WHO Non-profit organizations serving the bleeding disorders community

HNC: Hemophilia of North Carolina (HNC) is a non-profit organization dedicated to improving the quality of life of persons affected by bleeding disorders through advocacy, education, promotion of research, and supportive programs and services. HNC is a chapter of the National Hemophilia Foundation, and a chapter member of the Hemophilia Federation of America. In addition to broad community services HNC offers special programs for the Latino community, women and girls, and families newly diagnosed with a bleeding disorder.

260 Town Hall Drive, Suite A
Morrisville, NC 27560
www.hemophilia-nc.org (this site)
Phone: 800-990-5557

NHF: The National Hemophilia Foundation (www.hemophilia.org) is 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.

HFA: The Hemophilia Federation of America (hemophiliafed.org) is the national community-based advocacy organization serving all people living with bleeding disorders and their families across the United States.

ATHN: American Thrombosis & Hemostasis Network (www.athn.org), a non-profit organization committed to advancing and improving care for individuals affected by bleeding and thrombotic disorders.

PSI: Patient Services, Inc. (www.patientservicesinc.org) helps chronically ill patients with unaffordable medical expenses.

WHAT HTCs: Hemophilia Treatment Centers in North Carolina

Hemophilia Treatment Centers (HTCs) are usually affiliated with major medical centers and provide specialized, family-centered comprehensive care for those affected by bleeding and clotting disorders. Services include diagnosis, medical evaluation and management, 24-hour phone accessibility, and educational programs for medical professionals, patients and schools. HTCs are part of a federally-funded national HTC network, and participate in clinical trials and other leading edge research initiatives.

Please refer to the treatment centers section of this web site for an up to date list of medical facilities in the North Carolina area.

WHAT Common bleeding disorders terms

Coagulation – the process by which blood forms clots through the action of different clotting factors. Factors are often referred to with Roman numerals: VII (7), VIII (8), IX (9), X (10), etc.

Hemophilia A (classical hemophilia) – a deficiency in coagulation factor VIII (FVIII). May be categorized as mild, moderate, or severe.

Hemophilia B (Christmas disease) – a deficiency in coagulation factor IX (FIX). May be categorized as mild, moderate, or severe.

Von Willebrand disease (vWD) – a deficiency in von Willebrand factor (vWF), a part of FVIII.

Inhibitor – a naturally-occuring antibody that destroys clotting factor.

Plasma – the liquid portion of the blood that contains the clotting factors (total of 13 including VIII and IX).

Platelets – cells that circulate within our blood and bind together when they recognize damaged blood vessels.

PTT, PT – Partial Thromboplastin Time, Prothrombin Time – tests used to investigate unexplained bleeding or clotting.

TT – Thrombin time (clotting time) test.

CBC – Complete blood count – a test to evaluate the cellular portions of the blood.

WHO Pharmaceutical corporations producing medications used in the treatment of bleeding disorders

These companies produce treatment products but do not sell directly to the consumer. Products listed are approved for use in the US.

Bayer (Kogenate®FS, Kovaltry®, Jivi®)

Bio Products Laboratory – (Coagadex®)

CSL Behring (Afstyla®, Corifact®, Humate-P®, Idelvion®, Mononine®, Stimate®)

Genentech (Hemlibra®)

Grifols (Alphanate®, AlphaNine®SD, Profilnine®)

Kedrion Biopharma (Koate®-DVI [manufactured by Grifols])

Medexus Pharmaformerly Emergent Biosolutions; formerly Aptevo (Ixinity®)

Novo Nordisk (Esperoct®, Novoeight®, NovoSeven® RT, Rebinyn®, Tretten®)

Octapharma (Nuwiq®, Wilate®)

Pfizer (Xyntha®, BeneFIX®)

Sanofi Genzymeformerly Bioverativ, formerly Biogen (Eloctate®, Alprolix®)

Takedaformerly Shire, formerly Baxalta, formerly Baxter (Advate®, Adynovate®, Feiba®, Hemofil®M, Obizur®, Recombinate®, Rixubis®, Vonvendi®)

All pharmaceutical trademarks are the property of their respective manufacturers, who are not affiliated with HNC.

WHAT Pharmaceutical products commonly prescribed in the US for treatment of bleeding disorders

This list is provided here only as a general reference, not as a list of approved and/or potentially appropriate products. Except as noted, treatment is administered by injection into a vein. Some are plasma-derived (made from human blood); others are made using a recombinant DNA process. Always consult your physician about the most appropriate treatment product for your condition.

Please note: In addition to the disorders listed below, there are other more rare conditions that cause abnormal bleeding. These disorders – including acquired factor deficiencies and platelet disorders – and their pharmaceutical treatments are beyond the scope of this document. Please refer to the MASAC recommendations below for additional information.

Important References:

for hemophilia A:
Plasma-derived: Alphanate®, Koate®-DVI, Humate-P®, Hemofil® M
Recombinant: Advate®, Adynovate®, Afstyla®, Eloctate®, Esperoct®, Kogenate® FS, Kovaltry®, Jivi®, Novoeight®, Nuwiq®, Recombinate®, Xyntha®
Therapeutic antibody: Hemlibra® (administered subcutaneously)

for hemophilia A with inhibitor:
Plasma-derived: Feiba®
Recombinant: NovoSeven® RT
Therapeutic antibody: Hemlibra® (administered subcutaneously)

for hemophilia B:
Plasma-derived: Alphanine® SD, Bebulin®, Mononine®, Profilnine®
Recombinant: Alprolix®, BeneFIX®, Idelvion®, Ixinity®, Rebinyn®, Rixubis®

for hemophilia B with inhibitor:
Plasma-derived: Feiba®
Recombinant: NovoSeven® RT

for vWD:
Plasma-derived: Alphanate®, Humate-P®, Wilate®
Recombinant: Vonvendi®

for mild vWD or mild hemophilia A:
Desmopressin: a synthetic version of a naturally occurring hormone that releases vWF from blood vessel linings; usually administered as a nasal spray): Stimate® nasal spray (administered nasally), and DDAVP® injection

for Factor X deficiency:
Plasma-derived: Coagadex®, Profilnine®

for Factor XIII deficiency:
Plasma-derived: Corifact®
Recombinant: Tretten® (A-subunit)

All pharmaceutical trademarks are the property of their respective manufacturers, who are not affiliated with HNC.

WHO Home care companies providing services to people with bleeding disorders

These are for-profit “specialty pharmacy” businesses that sell medications and supplies to patients with bleeding disorders. Many of these companies provide additional services, including home delivery, pharmacist consultations, financial consultation and assistance, and in-home nursing and infusion services. Home care providers do not prescribe medications or give medical recommendations, nor do they make endorsements or referrals to a specific HTC, hemotologist or medical provider.

There are numerous home care companies operating in North Carolina. Your HTC will have the most current information about the providers that best fit your needs.

  • Accredo
  • ASAP Pharmacy
  • BioMatrix Specialty Pharmacy
  • Blue Sky Specialty Pharmacy
  • Cottrill's Specialty Pharmacy, Inc.
  • CVS¬†Specialty
  • Diplomat Specialty Infusion Group
  • DrugCo Health
  • The Ethical Factor
  • Hemophilia First
  • HPC Specialty Pharmacy
  • InfuCare Rx
  • NuFactor
  • Option Care
  • Optum
  • Paragon Healthcare
  • Realo Specialty Care Pharmacy
  • Specialty Therapeutic Care
  • TwelveStone Health Partners

This list is based on information available at publication time.

WHAT 340B Program

The 340B Drug Pricing Program is a federal program that allows Hemophilia Treatment Centers (HTCs) to purchase clotting factor at a discount for their patients. Participating HTCs rely on this program to fund on-going support for the specialized comprehensive services to people with bleeding disorders.

The HTC at UNC-CH School of Medicine provides outpatient clotting factor under the 340B Program. The HTC at Wake Forest University Medical Center and the East Carolina University HTC are working in partnership with the UNC-CH HTC 340B Program.

HNC Hemophilia of North Carolina 260 Town Hall Dr., Suite A, Morrisville, NC 27560 — 919-319-0014 Hemophilia of North Carolina is a 501(c)(3) non-profit organization.
All donations are tax-deductible.
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 This page was last modified on Tuesday, September 15th, 2020.