Women with Bleeding Disorders
A Q&A with Andra James (U.S.A.)
Despite wider understanding of women’s bleeding disorders, diagnosis can still take well over a decade, says Dr. Andra James, assistant professor of obstetrics and gynecology at Duke University, USA. Education of the front-line health professionals who are usually the first to see patients with gynecological bleeding issues, she says, is key to improving this discouraging statistic.
Q: Is the picture changing for women with bleeding disorders?
A: “I think the situation has become much more understood in the last 10 to 15 years. Hemophilia is an X-linked condition, so almost all of the affected individuals are men, and there’s a segment of that population who are severely affected by the condition. Other conditions that result in that degree of severity tend to be rare bleeding disorders.
“Hemophilia affects one in 5,000 people, whereas other conditions with that degree of severity affect one in a million. But there are milder bleeding disorders such as von Willebrand disease (VWD) that affect many more people. Within that diagnosis, women tend to be disproportionately affected because of the bleeding challenges they face related to the reproductive tract, menstruation, and childbirth and pregnancy.”
Q: Are there still barriers to diagnosis and treatment?
A: “Our experts in bleeding disorders are hematologists, and they’re often not the physicians who are approached when patients present with these gynecological bleeding issues. The patient is lined up with a gynecologist, a family physician, a general practitioner, and they don’t see a blood specialist. That’s one of the things that contribute to the long time it takes to get a diagnosis, on average 16 years in the United States. Women go through their entire lives without having the diagnosis made.
“We’ve screened patients in our institution looking for undiagnosed bleeding disorders among women with heavy menstrual bleeding. The average age of these patients was 38 so, clearly, they’d been putting up with this for a long time. And none of these patients had come to a hematologist. They had seen a gynecologist, or they were coming in for surgery and seeing the anesthesiologist, of all people. As professionals who are interested in this problem, we of course have to continue to educate ourselves, but one of the things we have to do is educate the front-line providers. They are trained to deal with the whole range of reproductive tract bleeding, but need to learn to distinguish what is too much, not normal, too heavy, and then what to do about it. So it’s about educating and partnering.”
Q: You mention the average of 16 years to diagnosis for women in the United States. From that starting point, how do you factor in disparities in care and treatment around the world?
A: “I think the people who could answer that would answer based on their experience, because there are no survey data that we can point to that have been published. The kind of data we have are the reports of our colleagues practicing in low-resource settings in Pakistan, in Kurdistan. They’re in places where due to all kinds of barriers—financial barriers, cultural barriers, educational barriers, transportation barriers—even if they had the money and the resources, the treatments aren’t available, or the physicians or providers don’t have the knowledge or information to provide them.
“There might be an obstetrical provider or gynecologist who has the information, but not a hematologist, or a hematologist might know, but not the gynecologist. We hear stories of women who suffer from profound menorrhagia and they’re ashamed to bring it to anybody’s attention. Then, once they do, their doctor may not know what can and should be done to evaluate the situation, or understand how to treat it, or have the resources to treat it.”
Q: Is this an issue that brings the bleeding disorders community together with other women’s health organizations in different parts of the world?
A: “There are a couple of things happening. The WFH has twinning programs between hemophilia treatment centres in high- and low-resource settings. And then, we’ve just tried to establish a connection between the World Health Organization’s post-partum hemorrhage program and the World Federation. The WFH tried to get me there for a program that brought nurses and midwives from a variety of countries together around transfusion and post-partum hemorrhage, and that turned out to be foiled by the volcanic ash issue in Iceland. But we did get to share our presentation remotely.”
Q: Are there more networking opportunities on the horizon?
A: “I hope so. Certainly, the WFH recognizes that women with bleeding disorders have unique needs, and we’ll look forward to making continued progress there.”
Dr. James’ plenary was delivered at the XXIX International Congress of the World Federation of Hemophilia, Buenos Aires, Argentina, July 10-14, 2010. Her state of the art paper, published in a special supplement of the WFH’s official journal Haemophilia, is available here.
Last Updated September 2010 |
