When representatives of the Federación de Hemofilia de la República Mexicana (Hemophilia Federation of the Republic of Mexico) explored reaching out to women with bleeding disorders, they discovered limited awareness about von Willebrand disease (VWD).
This scenario is not unique to Mexico. Many other countries face similar challenges. Symptoms of VWD and other bleeding disorders might only emerge when a young woman begins to menstruate, and global awareness of this fact should prompt the development of appropriate approaches to diagnosis and care. These new strategies are expected to improve the quality of life for women with bleeding disorders.
The World Federation of Hemophilia (WFH) has been working to improve the quality of life for all people with bleeding disorders for the past 50 years. However, the reality is that 75% of people with bleeding disorders worldwide remain undiagnosed or receive inadequate care. This presents even more of a challenge when it comes to women with inherited bleeding disorders.
Many women are unaware that their symptoms, such as heavy menstrual bleeding and easy bruising, are atypical. Those who do seek medical help are often inaccurately diagnosed due to healthcare providers’ lack of knowledge about bleeding disorder symptoms in women. Further, curricula in many medical and nursing schools in developing countries traditionally have not emphasized that inherited bleeding disorders can affect women differently than men.
Fortunately, the number of women identified with bleeding disorders has grown significantly in the past few years. Some of the most notable strides are being made in developed countries, largely due to educational campaigns that create awareness among healthcare providers of the symptoms of bleeding disorders in women. In addition, patient awareness has empowered women to ask their physicians about the possible causes of heavy menstrual bleeding and increased bruising. Patient registries, epidemiological studies and educational outreach in the medical field and among women’s groups have helped close the gap in care for women with bleeding disorders.
In developing countries, women with bleeding disorders face further challenges when it comes to diagnosis and treatment. Medical facilities may not have adequate or specialized laboratory equipment to diagnose or handle the bleeding disorders population. Further, healthcare systems in these countries are often underfunded. Adequate factor products for bleeding disorders, which are expensive, are often not available. Instead, limited funds are allocated to more high-profile diseases, such as HIV/AIDS and malaria. In some developing countries, a cultural bias exists within families who have both sons and daughters with bleeding disorders. Often, parents will pursue diagnosis and treatment only for their sons because of their limited resources and the high cost of replacement therapies.
As part of its commitment to women with bleeding disorders, the WFH has supported programs in the developing world that promote effective healthcare models and educational activities. By working on pilot development projects with their national member organizations in such countries as Mexico, Lebanon and Egypt, the WFH hopes to improve comprehensive management for women with bleeding disorders. This holistic care model addresses women’s medical and psychosocial needs.
For years, patients with hemophilia were more readily diagnosed and treated than those with VWD, says Luisa Durante, WFH regional program manager for the Americas. At the end of 2011, the Hemophilia Federation of the Republic of Mexico partnered with the WFH to initiate an 18-month project in the state of Jalisco, which concluded in April 2013.
During the project, testing for VWD was established in a research lab at one of the Social Security Institute hospitals in Guadalajara, a milestone for Mexico. Information packets were disseminated to doctors and medical units. A Web site containing WFH materials was also created to provide educational resources. It helped reinforce the message that VWD is present, though undiagnosed, in the local population. By highlighting that VWD increases the risk of mortality in pregnant women, the Mexican patient organization was instrumental in advocating for specialized treatment for these women. These treatments have been available since mid-2012 in certain hospitals.
“Addressing VWD has been an enormous challenge, a major change in the way we work with patients and healthcare authorities,” says Carlos Gaitan Fitch, president of the Hemophilia Federation of the Republic of Mexico.
The WFH national member organization in Beirut, Lebanon, Association Libanaise de l'Hémophilie (Lebanese Hemophilia Association), along with the country’s Ministry of Social Affairs, launched a pilot project in 2009 to identify patients with VWD. It also helped the patient organization respond to the high prevalence of VWD in certain regions of Lebanon.
“Lebanon has no structured health system, but life is going on because of personal initiatives,” says Claudia Khayat, MD, board member of the Lebanese Hemophilia Association. Prior to the VWD project, many healthcare workers had inadequate knowledge of bleeding disorders; only a few laboratories could conduct diagnostic tests.
As part of this project, healthcare workers in 26 centers received education on bleeding disorders, and a laboratory technician was trained to perform coagulation tests. Because female patients are more likely to seek treatment when it is available from a female staff member, the project sought to increase the female staff in treatment centers.
The Egyptian Society of Hemophilia in Cairo, Egypt, launched a project, initiated and partly funded by the WFH, to diagnose patients with VWD. Women were given a special focus in this outreach project. Healthcare professionals, particularly those in obstetrics and gynecology, were educated about VWD so they could refer patients for testing. Female patients with post-partum hemorrhage were screened. Two large maternity hospitals held regular screenings for women with excessive menstrual bleeding of undefined cause.
“Raising awareness in families of VWD patients to promote screening of other family members was a useful strategy,” says Magdy El Ekiaby, MD, general secretary of the Egyptian Society of Hemophilia. It reinforced the comprehensive care model that helps deliver treatment to bleeding disorders patients who reside in areas where adequate care is not already available. This pilot project, supported by the WFH, was crucial in highlighting the existing issues. However, further coordination among the healthcare authorities, the medical professionals and the Egyptian Society of Hemophilia is needed to continue this important initiative.
These three examples of VWD outreach in different countries demonstrate effective strategies that can be adapted elsewhere. These projects are central to WFH’s outreach efforts to raise general awareness about bleeding disorders, and the specific need to increase diagnosis and treatment efforts for women with bleeding disorders. Girls and women with bleeding disorders are widely dispersed globally, and they represent an underreported and often misdiagnosed patient group. They are the next frontier of outreach.
Visit NHF’s Victory for Women with Blood Disorders.
Scroll through the Women’s Bleeding Disorders section of HemAware.