MASAC Recommendation #113
MASAC Recommendations on Improved Access to Emergency Medical Care for Persons with Inherited Bleeding Disorders
The following recommendations were approved by the Medical and Scientific Advisory Council (MASAC) on February 23, 2001, and adopted by the NHF Board of Directors on March 4, 2001.
MASAC has received reports of individuals with bleeding disorders who have experienced difficulties receiving appropriate emergency medical care. To address this issue, MASAC recommends the following:
1. Individuals with bleeding disorders should be encouraged to have an emergency dose of factor concentrate or DDAVP in their home and to take factor concentrate or DDAVP with them when they travel.
2. Individuals with bleeding disorders should be provided by their HTC or other care provider with a card or letter explaining the emergency protocols for the treatment of their bleeding disorder. This document should specify that factor concentrate or DDAVP should be infused if there is any suspicion of a bleeding episode and before any invasive procedure or surgery is performed. This card or letter should indicate in an easily readable fashion when factor or DDAVP should be given by emergency medical technicians en route to an emergency room.
3. Individuals with bleeding disorders should be encouraged to establish a relationship with their preferred emergency department prior to an emergent event.
4. Local hemophilia organizations along with HTCs and other hemophilia care providers should investigate whether emergency departments in their region have rapid access to recombinant factor products. Individuals with hemophilia should be aware of which institutions in their area carry recombinant factor products.
5. Local hemophilia organizations along with HTCs and other hemophilia care providers should identify emergency departments and institutions in geographically remote areas that need to stock recombinant factor products. Discussions should be held with those institutions on ways to develop factor consignment systems.
6. Local hemophilia organizations along with HTCs and other hemophilia care providers should request that regional emergency medical services respect patient preference to be transported to institutions that stock factor concentrates and DDAVP.