To view this fact sheet in its entirety, along with the bibliography, click here.
It is believed that bleeding disorders affect over 2% of the general population in the United States.1 This means that over 380,000 New Yorkers have bleeding disorders.2 Prevalence studies are underway.3
Bleeders utilize hospital Emergency Departments (EDs) and ambulance or the services of Emergency Medical Technicians (EMTs) to handle life- and limb threatening medical emergencies.
Sometimes, blood loss can occur at such a rapid rate that even brief delays can result in death.4 These events are a well-known symptom of bleeding disorders.5
The federal government funds designated regional Hemophilia Treatment Centers (HTCs) to provide specialized care for bleeding disorders, which are rare medical conditions.
The federal government has been funding HTCs since the 1970s. In a Freedom of Information Law release, the federal government stated it has no accountability or audit procedures in place ensuring funds are spent on bleeding disorders care or ensuring appropriate treatment protocols are in place.
Typical triage procedures, when applied to bleeders, may endanger their lives or cause disfigurement by unnecessarily prolonging bleeding. Using routine assessment protocols for bleeders may result in unnecessary and expensive diagnostic tests.6
Typical ambulance procedures involve rotating patients among EDs in the area, resisting patient requests to go to a certain hospital. However, many, if not most hospitals in New York State (NYS), do not have the expertise nor the medications on hand to safely treat bleeders.
Although patients have the right to be taken to the hospital of their choice, many may not be aware of this right. In cases when a bleeder is unable to communicate in a medical emergency, it appears there is no requirement to read medical alert information and take bleeders to the hospital associated with the federally-designated HTC.
Ambulance personnel may not be aware that HTCs exist and where they are.
It is recommended that EDs and EMTs permit bleeders to utilize their own clotting medications if none is available. Furthermore, they are encouraged to listen to the patients and families in regards to treatment strategies and timing.9
These issues are causing serious safety issues in practice today. (At least one bleeder recently experienced life-threatening delays three times at an ED associated with an HTC because the ED staff refused to follow the recommended triage protocol and the EMT staff resisted transporting her to the correct ED. When a triage nurse in an ED was given a copy of the NYSDOH Hemophilia Advisory Panel written recommendations, he stated it appeared to be a forgery because it was blurry and had an old date.)
NYS Department of Health (NYSDOH) has the responsibility and authority to promulgate and enforce regulations and laws to protect public health.7
NYSDOH created a Hemophilia Advisory Panel (HAP) in 1983 to advise the department on programs and policies pertaining to hemophilia and related congenital bleeding disorders.8
HAP created an 8.5 inch by 11 inch poster and written suggestions for EMTs and EDs in 1986, and distributed them to those entities at that time.9
There appears to have been no DOH activity in more than 20 years to ensure EMTs and EDs are following the written suggestions and displaying the posters.
There exists no regulatory or legal requirement for EMTs and EDs to follow suggestions or to display the poster. An observation of ten New York State hospitals had a 0% rate of displaying the poster; it appears only one of those hospitals had a written protocol for hemophilia treatment.
The written suggestions and poster formerly available only via the HAP
websitewas blurry and illegible. NYSDOHs HAP coordinator declined to issue a new copy upon request by a patient who had already experienced serious safety issues in a New York State ED.
Observations and interviews conducted by advocates revealed that several major hospitals and EMTs were unaware of the suggested protocols nor did they have the poster on display.
Interviews of EMTs and ED staff revealed they are unaware that persons with bleeding disorders other than Hemophilia A or B can have life-threatening or disfiguring bleeds.
The language of HAPs web page and publications consistently uses the term Hemophilia, which can be confusing because it can mean either the specific diseases of Hemophilia A/B or it can mean all bleeding disorders as a group.
This lack of clarity could easily cause healthcare personnel to not follow proper protocols for persons with other bleeding disorders. (When one EMT was shown the protocol recently, he replied that it did not apply to a patient with severe vonWillebrands Disease.) In fact, the HAPs web page has a link labeled Bleeding Disorders--What is Hemophilia, which links to a discussion of only Hemophilia A and B. The HAPs web sites and links imply, perhaps unintentionally, that its purpose is to address issues only relevant to those two particular diagnoses.
Although education of a small number of individual healthcare providers were undertaken by advocates and HTC staff in 2008, DOH has the legal responsibility to ensure this serious public health safety issue is resolved uniformly across the state.7
NYSDOH HAP is currently comprised mainly by healthcare providers, who would seem to have a conflict of interest in regards to regulating themselves. NYSDOH HAP declined to add more consumer advocate positions when requested to do so.
Written suggestions, without the support of state regulations or regular
compliance audits, have not resulted in adequate safety conditions.
Immediate changes are needed to ensure our very safety. We have tried to advocate with health care providers and the state Department of Health but we have had insufficient success to establish safe conditions. We need the help of our elected officials to take action. Please help us by doing the following:
1. Change language of HAPs (Hemophilia Advisory Panel's) web page and publications to ensure they include all bleeding disorders.
2. Update and distribute legible poster(s) and protocol(s).
3. Utilize regulatory and/or legal remedies to ensure EDs and ambulances:
a. Have Dont Make a Bleeder Wait posters on display at all times
b. Have written policies that compliment the proper protocol for triaging,
transporting, and treating bleeders, which are in line with current
generally-accepted medical standards specifically for persons with
c. Provide annual reminders of this protocol to all ambulance and ED
d. Are subject to review of training, policies, and poster display during
regulatory site reviews