INHIBITORS AND HEMOPHILIA

What you should know.

Modern medicine does wonders for those with hemophilia. However, medicines can sometimes have their side effects. At AHF, we want our patients to be informed and ready so that they can live their lives well.

Inhibitors and Hemophilia3

TABLE OF CONTENTS

WHAT IS HEMOPHILIA? 4

WHAT ARE INHIBITORS? 7

WHO IS AFFECTED? 8

DETECTION AND TREATMENT. 11

WE’RE HERE TO HELP. 15

Inhibitors and Hemophilia4

WHAT IS HEMOPHILIA?

• A disorder that affects about 20,0001 people, mostly males, in the U.S.

• It occurs in all populations across the globe.

• A person has hemophilia from birth and has it for a lifetime.

• It is caused by an error in the genetic code that controls how and when a blood clot forms.

Information on this page is from the National Hemophilia Foundation.

Inhibitors and Hemophilia7

WHAT ARE INHIBITORS?

OVER THE PAST 30 YEARS, many medications have been developed to manage hemophilia. When used correctly, these medicines can help the blood to clot more normally. Although these medicines help blood clot, they can also bring complications. For example, the body can reject the medication. This rejection is called having an “inhibitor.”

When someone has an inhibitor to clotting medicine, it means that his or her own body stops the clotting action of the medicine by destroying the medicine when it enters the body. The clotting medicine is “seen” by the body as an enemy. When this happens, the body sends antibodies to try to destroy it. In a person with hemophilia A or B, inhibitors to Factor VIII or Factor IX are created after clotting medicine is used to replace the missing factors. The antibody attaches to the Factor VIII or IX to neutralize or destroy it.

Inhibitors and Hemophilia8

WHO IS AFFECTED?

IT IS ESTIMATED that 1/3 to 1/5 of people with severe hemophilia A may develop an inhibitor to clotting medicine. Inhibitors are less common for people with severe hemophilia B, affecting approximately 1% to 4% of individuals. Inhibitors most often develop during childhood, with an overwhelming percentage occurring in people under 30 years old, although some may develop inhibitors later in life.

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DETECTION AND TREATMENT.

DETECTION OF THE PRESENCE OF INHIBITORS can be difficult to determine. Many times, an individual will have no symptoms. Inhibitors are often discovered via laboratory testing during regular physician visits.

Unfortunately, many of those suspect inhibitors when bleeding fails to stop after treatment with factor concentrate.

If a person or the parent of a child with hemophilia believes they/their child has formed an inhibitor, he or she needs to be tested as soon as possible at a hemophilia treatment center or hematology clinic. A series of blood tests is done in a lab. These tests will show if an infusion of clotting medicine increases the level of factor in the person’s blood, as it should. If it does not, this will likely mean an inhibitor is stopping the clotting medication from working.

Once it is determined inhibitors are present, a patient is treated.

Inhibitors and Hemophilia12

TREATING INHIBITORS CAN BE CHALLENGING, and is often a two-fold process. First, the bleeding episode must be dealt with, and then the inhibitor itself. Dealing with inhibitors can take months, sometimes years.

There are also different levels of inhibitors. For those with low levels, continued therapy with factor replacement is often possible. For high responding inhibitors, treatment is more difficult and based on the type of hemophilia and the nature of the bleed.

It is important that each patient is looked at individually, as no two patients or situations are the same. Always consult with your healthcare provider.

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WE’RE HERE TO HELP.

OUR STAFF IS ON DUTY 24 HOURS A DAY, 365 days a year. We are here for you—to listen, to help and to make managing a bleeding disorder a bit easier. Our staff can be reached by phone or email.

CALL 800.243.4631

EMAIL ahf@ahfinfo.com

VISIT ahfinfo.com

31 Moody Road, P.O. Box 985Enfield, CT 06083

800.243.4621

FAX: 860.763.7022WEBSITE: www.ahfinfo.comEMAIL: ahf@ahfinfo.com

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SETTING THE STANDARD

OF HOMECARE FOR THE

BLEEDING DISORDERS

COMMUNITY

AHF does not engage in the practice of medicine. Under no circumstances does AHF recommend a particular treatment or medication for a particular individual. In all cases, AHF recommends that you consult a physician and/or your Hemophilia Treatment Center before beginning a specific treatment.