Black Men with Hemophilia Have a Shorter Life Expectancy than White Men

Black Men with Hemophilia Have a Shorter Life Expectancy than White Men

A researcher of disparities in hemophilia care discusses her findings and what's still left to learn.
Author: By James Langford

In the early 1900s, the average life expectancy for someone with hemophilia was just 13 years.

Developing the therapies that offer people with hemophilia a similar life expectancy to those without the bleeding disorder has required decades of research — work that is not only ongoing but broadening.

A research priority now is easing the burden of living with hemophilia, which includes not only making management of the disorder less arduous but also overcoming healthcare inequities that leave some racial and ethnic groups at a disadvantage.

The first step to bridging those gaps — a key goal of the National Research Blueprint, which the National Bleeding Disorders Foundation has taken the lead in developing — is identifying and understanding them, says Stacey Fedewa, Ph.D., an assistant professor of hematology and oncology at the Emory University School of Medicine.

“The more we understand, the better our chance of reducing them,” she adds.

Fedewa’s research into disparities in hemophilia care includes serving as the lead author of a study published in the journal Haemophilia in November 2023 showing that the life expectancy for Black men with the disorder still trails that of white men.

She has also examined access to hemophilia clinical trials among minority groups, in addition to racial and ethnic differences in depression and quality of life among people with hemophilia.

Here, she shares more about her research and what’s still left to learn.

How was the mortality study set up, and what did you find?

For the mortality study, we used cause-of-death information from death certificate data collected by the National Vital Statistics System to analyze trends in hemophilia-related deaths between 1999 and 2020. What we found was that hemophilia-related deaths declined by 46% in non-Hispanic white males and by 44% in non-Hispanic Black males.

While there was not much of a disparity between the groups in terms of declining hemophilia-related mortality, the declines were parallel, which meant the disparities between Black and white mortality rates persisted. Because of that, non-Hispanic Black males still have 30% higher hemophilia-related death rates and their average age of death is about 10 years younger than for non-Hispanic white males.

Did the study offer any insights into the reasons for that?

No, it didn’t. Death certificate data is extremely useful because it captures all the deaths in the U.S., but it doesn’t include details on hemophilia care, access to care, or complications. It can be used to measure general progress, but it doesn’t pinpoint why disparities exist; it simply detects them. We now need additional studies to measure where the disparities are arising from.

Has there been any research in the past that might offer clues?

Historically, much of the research in hemophilia has, appropriately, been focused on developing treatments, so there’s not a long history of research into differences in care and outcomes. There’s a lot of room for us to learn about why some of these disparities exist.

What are some barriers that have caused disparities in healthcare more generally? There have been reports on the effects of socioeconomic status and healthcare deserts, for instance.

Regardless of the type of healthcare you need, there can be barriers. Think about, No. 1, how you access care. Just getting to the healthcare facility can be influenced by income, time off from work, travel time if you live far away, and other logistical barriers. If you don’t have paid time off from work, that can be a barrier. In some cases, you may have employer insurance that pays for the service, but you’re still unable to get time off from work to obtain it.

Hemophilia treatment centers, for instance, offer fantastic specialized care, but you still have to get people to the center for that care, and driving distance is only one aspect of that. There may be barriers we’re not even aware of, so we need to study what would make it easier for people with hemophilia to get to their care centers and consistently access the best-quality care over time.

You’ve also studied disparities in quality of life. What did you learn from the study published this year in the Journal of Racial and Ethnic Health Disparities examining depression and hemophilia-related distress?

One thing that I liked about that study is that we really focused on hemophilia-specific measures. We used a hemophilia-related distress questionnaire, which has a summary score but also asks about four specific areas. What we found was that non-Hispanic Black participants had higher overall hemophilia-related distress, and especially in two areas: financial concerns and daily function, or the ability to go about their daily routines. When we adjusted for socioeconomic status, the differences in financial concerns between non-Hispanic Black and non-Hispanic white participants diminished, although the daily function scores were still worse for non-Hispanic Black participants.

We also found that non-Hispanic Black participants reported worse pain scores. While they were experiencing more physical symptoms and a higher financial burden, depression was actually a little lower among non-Hispanic Black participants. That’s something we can follow up on in people with hemophilia. If there’s more spiritual support, which has been researched in non-hemophilia populations, or more family or social support, that could provide some protection against depression despite worse pain.