Ronia Cole, 52, of Redford Township, Michigan, has lived with a bleeding disorder since she was a toddler.
“I’d take a fall, bruise easily and my mom couldn’t understand why,” she says. Her pediatrician had no answers or real treatment for her. Many doctors struggled to find ways to treat her prolonged nosebleeds and excessive gum bleeds.
When she turned 5, Cole was diagnosed with von Willebrand disease (VWD). During the mid-1970s, this inherited bleeding disorder was extremely rare among African Americans. In fact, after undergoing tests at the University of Michigan Medical Center, her family was told she may have been the first in her state to be diagnosed with VWD.
“After my diagnosis, my mom began to build a better rapport with our family doctor, my hematologist, and my ear, nose and throat specialist in order to help me maintain a normal hemoglobin,” Cole says. In her mid-20s, Cole struggled with heavy periods and had to seek various ways to control excessive bleeding episodes.
It is estimated that nearly 3 million Americans are living with VWD, and it is the
Tammuella Chrisentery-Singleton, MD, chief of hematology for the Louisiana Center for Advanced Medicine in New Orleans, says it’s common for Black women with bleeding disorders to struggle to get answers.
“Overall, it’s challenging to diagnose a bleeding disorder because primary care physicians don’t have significant training in diagnosing and treating them,” says Singleton. But for Black women, there are also significant cultural and systemic factors
“As an example, if you’re white, nine times out of 10 you’re going to a doctor regularly, and that doctor knows you and understands you from a cultural standpoint,” she says. “But a lot of Black people often don’t feel comfortable going to the doctor because they haven’t really established a relationship with a provider.
“As a Black physician, I have a bit of an advantage when I’m talking to other Black people, many of whom are feeling disenfranchised from the medical system,” Singleton says. When she is working with people who have limited financial resources, such as patients who are on Medicaid, she understands that they need some extra help.
“I know that many of them may not fully understand what’s happening, so I’ll spend some extra time explaining and trying to provide some additional resources,” she says, adding that those kinds of connections often are not made for Black women who have bleeding disorders.
Connie Montgomery, 51, of Pawleys Island, South Carolina, has lived with factor VII deficiency since birth, but she didn’t get a diagnosis until her mid-30s. “I went through my adolescent years with heavy, painful periods and often bled through my clothes at school,” she says. Her mother took her to pediatricians, but she says nobody listened to them. “And culturally, it was difficult—it was stressed that you didn’t talk about it outside of the home. My mother said that you just deal with it,” she says.
As Montgomery got older, she continued to seek help from several ob/gyns about her pain and heavy periods. “Doctors would tell me that it can’t be that bad,” she says.
Even after having two cesarean section births and heavy postpartum bleeding for a month and a half, Montgomery says she was repeatedly misdiagnosed or not diagnosed at all. “When I was 36 years old and was in a terrible car accident, I came across a compassionate emergency room doctor who listened to what I had to say and helped me get a real diagnosis through a hematologist.”
Keri L. Norris, PhD, the National Hemophilia Foundation’s (NHF) vice president of health equity, diversity and inclusion, says that “it can be difficult to diagnose or treat chronic conditions—including blood or bleeding disorders—for anyone, but women of color are statistically more likely to be faced with these challenges.”
According to Norris, studies have shown significant disparities in diagnosis, treatment and care for more common chronic diseases. “To eliminate diagnosis and treatment disparities in chronic diseases such as blood and bleeding disorders, access and affordability need to improve for all aspects of healthcare, including prevention,” she says.
Fighting for Coverage
Once they finally get the correct diagnosis, many women struggle to afford the necessary treatments and prescriptions for bleeding disorders. Montgomery says the IV medication she desperately needs costs $350,000 a year. She has learned to maneuver through the obstacle course of providers and insurers to make sure she gets what she needs. “I have had to learn how to work with both my insurance company, my husband’s insurance company, the pharmacy that provides the medication and a benefits coordinator to make certain that I get my medication.”
During the times when she couldn’t afford what she needed, she would go to charitable organizations, such as Patient Services, Inc. “When I had to involve them, I had to get them and get everybody else on a conference call at one time and say, ‘Hey, I’m the patient. These are my insurance companies, and this is the benefits coordinator at the pharmacy. This is what I know.’”
Montgomery says it has been stressful but worth it. “I’m going to do whatever is necessary within the legal lines of the law to get the necessary medication I need to live and enjoy my family,” she says with conviction.
Unfortunately, says Montgomery, many Black women are so used to being told no that they don’t have the skills to get access to the care they need. Montgomery has since become a voice for women who are struggling to find equitable and affordable care. She serves as a co-chair of the Medical University of South Carolina Diversity and Inclusion Patient and Family Advisory Task Force.
According to Norris, “These health disparities can only be removed by starting with increasing equitable prevention efforts, and from there working to reduce costs and reform the healthcare system at large.” To achieve this reality, “NHF is ready and willing to work together with community members and partners, beginning with increased education around diagnosis and management, and advocacy for increased medication affordability.”
Montgomery has also helped her daughter, Connor Graham, 24, navigate the waters of doctors, medications and care for her own bleeding disorder. Recently, Graham graduated from an advanced degree program in South Carolina and moved to Boston for a job as a communications specialist. She has been diagnosed with factor V Leiden and as a carrier for factor VII deficiency. “Mine started manifesting during puberty, with heavy and long periods,” she says. Later, she also started having nosebleeds and microbleeds in her joints after physical activities. “Because I am a carrier for factor VII deficiency and I don’t have the disorder like my mother, I am not eligible for specific medications and treatments,” Graham says.
She has learned to manage by being mindful and taking preventive steps, especially for joint bleeds. Graham golfs for recreation when she can, and uses compression, icing and elevation to reduce the chances of knee bleeds from all the walking. She also takes birth control pills to help reduce the length and severity of her periods. “I take a progesterone-only pill right now, due to my factor V Leiden diagnosis,” she says. “I feel fortunate to have my mother as an advocate who understands the challenges we face. Most women like me don’t have that,” Graham says.
Meeting Multiple Needs
According to Singleton, the challenges that Black women face in managing the diagnosis and treatment of their bleeding disorders are a part of the continuum of health equity issues that they face in all aspects of access to quality healthcare. “The average person, especially individuals of color who come from low-income families and individuals with low academic levels, is struggling to have access to services and the medications they need,” she says.
Norris agrees. “The difficulty in diagnosis, treatment and care for chronic conditions and women of color is, of course, a microcosm of the larger issues plaguing the American healthcare system,” she says. Simply put, if a health outcome is seen to a greater or lesser extent between populations, there is disparity. “From implicit bias to unhidden biases, much work must be done to rid the healthcare system of its troubling and lingering roots in systemic racism,” Norris says.
“We must take a close look at Black women of all ages who have a need for support in their complex healthcare needs,” adds Montgomery. Before retiring, she worked in the healthcare industry. “It is important to understand what the needs are beyond just expensive medicine—including mental, physical, emotional and definitely spiritual needs—when it comes to managing our care.”
As for Black women who are living with blood or bleeding disorders, Montgomery advises them to be fearless in reaching out for help. “It’s important for women to know that their diagnosis does not have to define or limit their possibilities in life,” she says.