The following recommendation was approved by the Medical and Scientific Advisory Council (MASAC) on April 13, 2014, and adopted by the NHF Board of Directors on June 5, 2014.
Patients with hemophilia and other bleeding disorders require immediate availability of factor concentrate in the event of an emergency. All patients with hemophilia, regardless of whether they are on home treatment or not, need an emergency supply of factor for self- infusion or to take to the nearest emergency department or medical facility. Unfortunately, insurance companies and Medicaid are limiting the amount of factor a patient can have at home or denying refills until patients are down to the last 2 doses. This practice places the patient at risk for severe and continued bleeding in the event of an emergency because it does not provide families with enough factor to cover a serious bleed over a long weekend or when a natural disaster makes it impossible for factor deliveries to occur in a timely manner.
Hurricane Katrina provides an example of the difficulties encountered in a natural disaster. The accompanying document entitled "Background Information" details the responses of CDC and NHF to this disaster and their successful efforts to provide medical information and factor for patients displaced by the hurricane.
In Utah, California and other states, there is a concern about the effect of a major earthquake. The "Background Information" provides some thoughts on this issue.
The "Background Information" also delineates the difficulties with Medicaid that are being encountered in Michigan.
All patients with severe and moderately severe inherited bleeding disorders for whom clotting factor concentrates (CFC) are available should have 7 extra doses (special consideration of number of doses for inhibitor patients) of the CFC at home to be available in the event of an emergency. The dose should be based on the factor level to achieve a hemostatic level of 100%, rounded up to the nearest vial size. The dose and frequency should be determined by the patient's health-care provider.
Individuals should consult the FDA Emergency Preparedness website for additional information on emergency preparedness.
This material is provided for your general information only. NHF does not give medical advice or engage in the practice of medicine. NHF under no circumstances recommends particular treatment for specific individuals and in all cases recommends that you consult your physician or local treatment center before pursuing any course of treatment.
Copyright 2014 National Hemophilia Foundation. To facilitate the dissemination of these medical recommendations, reproduction of any material in this publication in whole or in part will be permitted provided: 1) a specific reference to the MASAC recommendation number and title is included and 2) the reproduction is not intended for use in connection with the marketing, sale or promotion of any product or service. NHF reserves the right to make the final determination of compliance with this policy. For questions or to obtain a copy of the most recent recommendations, please contact the NHF Director of Communications at 1-800-42-HANDI or visit the NHF website at www.hemophilia.org.