Founded in 1957, The New England Hemophilia Association (NEHA) is a non-profit organization dedicated to improving the quality of life of all persons with bleeding disorders and their families through education, support and advocacy in CT, MA, ME, NH, RI, VT.
In the 1980’s and 1990’s, the bleeding disorders community suffered devastating losses 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. Children born today are expected to have the same life expectancy as those without a bleeding disorder.
It is now commonplace for families to learn to treat their conditions 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 and potentially life-threatening conditions that have a significant impact on patients and their families. Head bleeds can cause irreversible damage, while target joints remain a major concern. Inhibitors, a complication of hemophilia that often results in bleeding that is difficult to control, is not well understood yet. Moreover, treatment of bleeding disorders usually means IV infusions, and experiencing regular needle sticks can be traumatic as can the need to master complicated medical techniques. The need to regularly interact with and advocate for oneself with medical professionals, insurance companies, and schools, 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 $350,000 per year. As a result, insurance coverage is a major concern for families, especially in today’s changing healthcare environment. Finally, living in an era of tremendous scientific research brings excitement, opportunities, and hope for the future of our hemophilia community. However, the rapidly changing medical landscape can also bring with it questions and confusion about the best course of treatment for each family.
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.