Founded in 1957, the New England Hemophilia Association (NEHA) serves individuals and families with inherited bleeding disorders, who need information, emotional support and an organization to voice their needs and concerns.
The bleeding disorders community suffered devastating losses in the 1980’s and 1990’s due to the contamination of factor concentrates with HIV and hepatitis C. Our small community was robbed of an entire generation. Today many families are grieving the loss of loved ones, and many also are living with the debilitating effects of these two diseases or the medications used to treat them. Thankfully, the younger generation of children with bleeding disorders has a different future with safe and improved treatments for hemophilia and von Willebrand disease. In fact, studies show that children born between 2001 and 2011 are expected to have the same life expectency as those withouth a bleeding disorders.
It is now commonplace for families to learn to treat at home. A person with severe hemophilia who used to bleed as frequently as once a week can now control bleeding so it resembles a milder condition. Much of the serious joint disease caused by bleeding episodes can be prevented with prophylactic treatment regimens. Many patients are pushing the limits and actively participating in sports that would have been strictly “off-limits” just a few years ago.
Despite these advances, however, hemophilia and von Willebrand disease continue to be serious conditions that can still have a significant impact on patients and their families and that can still cause life-threatening bleeding. Inhibitor patients have bleeding that is difficult to control, and inhibitors are not well understood yet. Head bleeds can cause irreversible damage, while target joints remain a major concern. Moreover, treatment of bleeding disorders usually means IV infusions, and experiencing regular needle sticks can be traumatic for children. The need to interact with medical professionals, insurance companies, and schools, as well as the necessity of mastering complicated medical techniques can cause profound psychosocial stresses. Adding to that strain can be medical costs. Factor concentrates are one of the most expensive medications on the market, typically costing $250,000 per year. As a result, insurance coverage is a major concern for families, especially in today’s changing health care environment.
With the conviction that education, support and advocacy can improve quality of life, prevent disability and enable persons to live active, fulfilling lives, NEHA currently offers a range of programs and services. Led by a volunteer Board of Directors, and managed by a small group of professional staff, the organization is well positioned to lead this community into the future.