When Ashley Gregory’s baby son died from haemophilia, life turned upside down. Through her devastating loss, she learned that she had the disorder, which is one of the bleeding disorders that often go undiagnosed and untreated in women. Determined to change the statistics, Ashley along with others, organised the FAIR Time for Women Coalition (FAIR) to educate women, physicians, and policymakers, and to advocate for better care.
Ashley envisioned life as an interior decorator, never imagining she would one day become a patient advocacy champion. Her world changed forever when her twin boys were born with haemophilia and one of the babies died from a misdiagnosed brain bleed, just before his first birthday.
“Advocacy gets thrust upon you,” says Ashley, whose own haemophilia, which she passed on to the twins, went undiagnosed for many years. “Haemophilia broke me and broke us as a family and we really did rise through the ashes by advocating for others.”
Throughout her lifetime, Ashley bled easily and heavily, whether during her period or when having dental work or surgery. But it wasn’t until the twins were born with haemophilia that she wondered whether her history of unusual bleeding might be related.
Physicians had told her that while they could be carriers of haemophilia, the disease only occurred in their sons. But 10 years ago, when she was volunteering for her local California-based haemophilia foundation, Ashley and others helped develop a program where women shared common experiences of excessive bleeding. “They knew what the symptoms looked like because many of them have sons with bleeding disorders,” she said.
When these women went to their doctors, they were rarely correctly diagnosed. In fact, when physicians would draw their blood and look at their levels of blood clotting factors — which is how haemophilia is diagnosed — their numbers often looked normal.
My vision is that they could go to their primary care physician with bleeding symptoms and be referred to a federally funded haemophilia treatment centre. I’d like bleeding disorders to become as well-understood as diabetes.
Bleeding disorders research and treatment have historically focused on men and haemophilia. This has resulted in women with bleeding disorders being commonly underdiagnosed. And even though the medical research exists, there are many doctors who lack of knowledge about the current science and how bleeding disorders show up in women and girls.
Eventually, Ashley was approached by a man in the national haemophilia awareness community whose wife had bleeding disorders. He believed patients weren’t always recognised, even within the awareness organisation. He helped her organise FAIR Time for Women — “Females Are Important to be Recognised with bleeding disorders” — whose mission is to enable diagnosis, care and treatment for women who have bleeding disorders.
“As mothers, we have championed our sons in this community, and it meant so much to have a ‘blood brother’ have our back,” she says.
Roche, which is working to improve outcomes in women’s health by partnering with groups with innovative approaches to meeting those goals, supports FAIR, which is making a difference in the understanding of blood disorders in women. FAIR has built a website and created a toolkit designed by a physician who lives with haemophilia to educate other physicians and explain the need for treatment. To extend its reach, the group has hired a policy expert — who also lives with haemophilia, as do his daughters — to advocate for federal funding for the disorders, and to expand clinical research.
“It’s about improving awareness, educating the women who have bleeding disorders, the physicians, and the insurance companies,” Ashley says.
Today, Ashley’s surviving twin son is 26. “He could very well have daughters some day with haemophilia,” she says. Her hope for her grandchildren, and for the future, is that women will have better access to diagnosis and treatment.
My vision is that they could go to their primary care physician with bleeding symptoms and be referred to a federally funded haemophilia treatment centre. I’d like women’s bleeding disorders to become as well-understood as diabetes.
Becoming a patient advocate has driven Ashley to help improve healthcare outcomes for women. “It’s a special calling,” she says. “And I’m so humbled to work with the people who support us because this work doesn’t get done alone.”