For months, Anise had been plagued by fatigue, headaches, and an increasing number of bruises on her body from the lightest contact. Even after blood tests and repeated emergency room visits, Anise felt like she still wasn’t being heard because she was feeling worse each day.

Anise wasn’t dealing with everyday annoyances. She was experiencing symptoms of a yet-to-be diagnosed rare blood disorder. But getting that diagnosis was a journey that highlights a concerning trend in health care: Black women in the US are more likely than their white counterparts to feel unheard by doctors.

Data from a survey conducted by Sanofi, a global healthcare company, as part of its effort to address healthcare disparities globally, sheds light on how underrepresented communities feel disproportionately impacted by what can be considered a “trust gap.” The survey, part of the company’s “A Million Conversations” initiative, found that in the US Black and Hispanic adults, members of the LGBTQ+, and people with disabilities are significantly more likely than white adults to report feeling unheard by their doctors.

This lack of trust can have severe consequences, potentially leading to delayed diagnoses and treatment, even for critical conditions where swift intervention is crucial.

A several-month journey to being told you have 12 hours to live

Anise’s first signs of illness came to light after bloodwork found her platelet count had fallen to 34,000 platelets per microliter of blood — a normal platelet count in adults ranges from 150,000 to 450,000 platelets per microliter.

“I told my hematologist I thought my platelet count could be driving my severe headaches, but they didn’t hear me,” says Anise, recalling frustrating days of trying to figure out the cause of her ailments. “Those severe headaches were so bad that I would end up in the emergency room almost weekly.” The doctor diagnosed them as hemiplegic migraines, a type of migraine headaches. 

Eventually, her hematologist ordered a bone marrow biopsy. But her healthcare team misdiagnosed her with idiopathic thrombocytopenic purpura (ITP), a type of blood disorder. At the same time, her platelet counts dropped to 13,000 platelets per microliter.

Anise says she “basically begged to be admitted to the hospital at that point… That is just how unwell I was feeling at the time. But I was told my symptoms didn’t merit it.”

The next day, Anise’s family found her drifting in and out of consciousness. Her urine had turned dark red and tarry.

Once rushed to the hospital, an on-call hematologist saw the bone marrow biopsy in her chart, made a presumptive diagnosis of acquired thrombotic thrombocytopenic purpura (aTTP), a rare and life-threatening blood clotting disorder as known as immune-mediated TTP, and ran additional tests to confirm his thinking. He immediately recommended Anise be treated via a plasma exchange. She only had 12 hours left to live, he warned.

The next morning, Anise had a large stroke.

A concerning truth: The trust gap in the healthcare system

Anise’s story is more than just a medical journey, but it’s a reminder of the pitfalls of systemic bias that could lead to delayed medical diagnosis. And her experience isn’t unique.

“Following my aTTP diagnosis, I searched for answers and started sharing my experiences on social media where I connected with other aTTP survivors who believed they were alone,” Anise said. The few she found on social media shared very similar stories.

“Every Latina and African American woman I’ve spoken with had the same story about not being heard. They each had labs that showed they had aTTP and were misdiagnosed until it was almost too late. For many, people were not listening to their concerns as they advocated for themselves. For others, their healthcare providers unfortunately didn’t know about aTTP or how to diagnose it.”

Sanofi is working to help bridge the trust gap so the healthcare system can provide access to care that serves everyone. The company is investing millions of dollars globally by 2030 through a scholarship program to help individuals from underrepresented communities pursue careers in healthcare and related fields. The company also is holding “A Million Conversations” dialogues in different communities, and producing research, data, and policy recommendations to help repair the system.

The work is far from over, but critical for so many.

“Equality cannot live without equity, which means that equal access to healthcare alone does not guarantee fair treatment for all,” Anise says. “We all deserve to be heard. Our lives depend on it.”