Erica Hensley
“This is not the first report on women’s health and it won’t be the last,” says Dr. Eve Higginbotham, lead author of Advancing Research on Chronic Conditions in Women, a sweeping review published this month by the influential National Academies of Sciences, Engineering and Medicine (NAS) into the lack of research on chronic conditions that predominantly affect women.
The Fuller Project has certainly been here before. The academy’s report reiterates many findings from our reporting on how medical research has largely left women behind — millions of women who live with long-lasting chronic conditions, the leading cause of death in the U.S.
More recently, chronic conditions have been identified as partial drivers for increased maternal mortality. Higginbotham’s report adds to the urgency of understanding why women are disproportionately affected by conditions such as Alzheimer’s disease, depression, and osteoporosis. The report also looks at how the medical establishment has fostered these inequities, highlighting that national surveillance systems and population studies inconsistently report data on conditions affecting women and the tendency of women’s symptoms to be dismissed by clinicians.
For Higginbotham, who is also a dean of diversity, equity and inclusion for University of Pennsylvania’s medical school, the work is personal. Her mother lived with uterine fibroids, heart arrhythmia and hypothyroidism most of her adult life.
Higginbotham recalls her mother gracefully managing raising three children while working as a Black teacher in New Orleans during the segregation era. The tolls of working and raising children in the Deep South under Jim Crow added adversity that would be understood today as traumatic pressure on her allostatic load — the cumulative effects that chronic stress has on mental and physical health, making illnesses worse.
For instance, under segregation, Higginbotham’s mother had to walk twice as far to the “colored” school compared to the neighboring white school, and she taught double the class-size compared to class sizes in the white school. She later developed severe osteoporosis, making walking nearly impossible, and Parkinson’s. Neither of these illnesses were diagnosed or treated as correlated to her other conditions.
“There’s still so much to be learned and a lot of work to be done,” says Higginbotham, on how chronic conditions work together or against each other, particularly with relation to the unique burden of women of color.
“She always projected a level of confidence and well-being as she navigated her societal stresses, but she spent the last part of her life largely in a wheelchair and unable to fully function” Higginbotham says. The researcher and author often wonders how things could have turned out if her mother had received proactive healthcare.
One of the report’s recommendations focuses on multiple chronic conditions — when someone has two or more lingering illnesses that may or may not overlap, such as depression and PTSD, or high blood pressure and diabetes — like those of Higginbotham’s mom.
While women live longer than men, they spend a quarter more of their lives in poor health. That equals nine more years of disability compared to men, according to a recent World Economic Forum report that shows nearly 60% of the global disease burden disproportionately affects women. Eliminating that health gap could boost the global economy by more than $1 trillion a year, the WEF said.
But addressing the harm will take substantial investment at the policy and provider level, according to the new NAS report. That means getting research to prioritize women participants for major drivers of chronic conditions, like cardiovascular disease, Alzheimer’s and HIV.
“We’re playing catchup, trying to correct that imbalance,” says Arthur Arnold, a biology professor at UCLA who worked on the committee behind the NAS report.
“At the same time as we’re playing catchup, new biological factors are discovered every day that make males and females different,” Arnold says. He notes that most animal-based research that take place before trials advance to humans still rely mostly on males.
But before prioritizing women, these studies need to start including them in the first place. Research is still trying to understand the basic science of sex differences, like the influence of different hormones on organs, because women were actively excluded from routine medical research until 20 years ago and are still under-represented in many research areas, The Fuller Project found.
This May, we published a story on how Black women made up less than 1% of the trial participants for a new drug that shows promise in treating Alzheimer’s — even though women are twice as likely as men to be diagnosed with the disease, and Black women are twice as likely as white women to suffer from it.
“Without appropriate participation, it’s impossible to get a complete and accurate understanding of Alzheimer’s in the U.S., much less efficacy and safety,” says Carl Hill, chief diversity, equity and inclusion officer for the Alzheimer’s Association. “That’s just bad science.”
