Shelley Henderson was 12 the first time she felt as if she couldn't breathe.
She was terrified, sure she was dying.
But her parents recognized the symptoms. Their other daughter had dealt with asthma attacks before.
They gave Henderson her sister's inhaler and waited. They were concerned, but knew that taking her to an emergency room would come with a big bill.
So they waited. Until her condition got so bad that they had no choice.
"It's crazy that we're surrounded by large health care systems but to feel like there's no choice but wait to go to the ER," said Henderson, now a 30-year-old doctor living in West Philadelphia.
Yet that's reality for many in Philly, especially in minority communities. Despite being surrounded by world-renowned hospitals and research centers, people often lack access to care, and their health outcomes show it.
City data show that 18% of Hispanics and 14% of black people have forgone care due to cost, compared with 11% of whites.
Even those who can afford care can't always find a doctor. One study found that Philadelphia neighborhoods with a majority of black residents are 28 times more likely to have a shortage of primary-care doctors, regardless of residents' income or insurance status.
Henderson is setting out to change that.
A recent graduate of the Perelman School of Medicine at the University of Pennsylvania, Henderson is now a family medicine resident who plans to enroll in the National Health Service Corps to provide primary care in Philadelphia's underserved neighborhoods. She's also trying to improve the relationship between Penn doctors and West Philly residents by bringing them together for meetings in local barbershops.
Henderson's own experience with asthma and her sister's struggle with asthma and type 1 diabetes have made her intimately familiar with the disproportionate toll that chronic illnesses take on black Americans.
The reasons are complex – from a lack of insurance to poor economic opportunities and the stress of exposure to racism – but one thing Henderson thinks could make a big difference is building better relationships between black Americans and their primary-care doctors.
"A lot of things primary-care doctors should do were missed or not well-understood with my sister," Henderson said.
For example, recommendations on what her sister should eat or if she should have been given an insulin pump as a child. Studies show black children are less likely to be prescribed insulin pumps than white children, even when their families have the same insurance and income.
Today, Henderson's sister is on dialysis after she went into kidney failure.
"It seemed like there was no real partnership in taking care of her diabetes," Henderson said.
As a child, Henderson didn't know things could be any different.
"Until I got to college I didn't realize, 'Wow, what I grew up around isn't the norm,'" she said. "People can actually be a lot healthier."
Growing up, Henderson's school bus route began in Olney, passing fast-food restaurants and liquor stores, and ended at Julia R. Masterman School in Spring Garden, near grocery stores and coffee shops.
The stark differences frustrated her. "Why isn't my community making better choices?" she thought.
Years later, as an undergraduate at Harvard University, she learned it wasn't so simple.
Those businesses weren't there because her neighbors preferred them, professor David Williams explained. Rather, a history of segregation and discriminatory policies left many black neighborhoods without adequate food, health, and economic resources – even while adjacent white neighborhoods flourished.
"Yes, we need to make healthy choices," Williams said in an interview with The Inquirer. "But some Americans live in places where the healthy choice isn't even available."
Redlining, a practice in which banks denied loans in certain neighborhoods, discouraged large businesses such as supermarkets from opening in black neighborhoods. Today, "food deserts," where residents struggle to find healthy food, disproportionately affect minority communities.
At the same time, tobacco and alcohol industries have long been known to target low-income communities. In Philadelphia, there are three times as many tobacco retailers in North Philadelphia as in Center City, according to the health department.
Black and Hispanic neighborhoods are also more likely to be near highways and power plants, exposing residents to harmful pollutants in the air and water.
The effects add up. Today, someone born in Spring Garden can expect to live, on average, to age 87, yet two miles away in Mantua, the life expectancy is just 66 years.
Although addressing these disparities requires changes in a number of areas, from education to economics to housing, Henderson said, health care seems like a good place to start.
While Henderson was in medical school, her father was diagnosed with metastatic squamous cell carcinoma, a skin cancer that had spread to other organs. When she accompanied him to doctors' appointments, she saw how doctors often talked in jargon and seemed too busy to answer his questions. Some acted as if he were exaggerating his pain to get more medication, Henderson said.
Although he's in remission now, Henderson still remembers the way doctors seemed to dismiss him.
A growing body of research shows that implicit and explicit biases can lead doctors to treat black patients differently from white patients, discrediting their pain, standing farther away from them, and making less eye contact.
Conversely, having a black doctor can lead to better interactions for black patients, especially when it comes to preventive care, studies show. Doctors from minority ethnic groups or those who grew up in underserved areas are also more likely to practice in marginalized communities and in primary care.
But there's a major shortage of black doctors in the U.S., so diversity in the medical workforce alone cannot address the issue of disparities.
Instead, physicians have to get creative, said Edith Peterson Mitchell, director of Thomas Jefferson University Hospital's Center to Eliminate Cancer Disparities and former president of the National Medical Association, which represents black physicians.
In 1995, Mitchell wanted to increase the number of black patients getting screened for breast and colorectal cancers. But when she reached out to primary-care doctors, they said they didn't have enough time to explain the pros and cons of screening to each patient, and often didn't know what to do if someone screened positive.
So Mitchell created educational pamphlets and videos that could be shown in waiting rooms. She told the doctors they could refer anyone who was diagnosed with cancer directly to her, and she'd push to get those patients into clinical trials.
Over the next two decades, the number of black patients in the hospital's clinical trials doubled.
"Rather than just talk about disparity, we have to do something about it," Mitchell said. "If we don't, years from now we will continue to say the same things."
Even as a medical student, Henderson understood that fact.
When she was tasked by her honors society with heading up a week of events around patient-centered care, she turned it into an opportunity to address health disparities in West Philly. Rather than focusing on doctors and patients at Penn, she ventured outside the hospital and two miles west to Philly Cuts barbershop.
Darryl Thomas has owned Philly Cuts for 22 years – nearly half of his life. What started as an attempt to bring economic opportunity to the neighborhood where he grew up has grown into a hub of community services.
The shop offers free haircuts for the homeless and discounted cuts to veterans. Every Saturday for more than a decade, it has hosted first-year medical students who offer blood pressure screenings to customers.
When Henderson, whose father is Thomas' cousin, contacted him about hosting a town hall event with Penn, he was immediately on board.
"Penn has a lot to offer," Thomas said, "but you can't sell a secret ... They need to tell residents what opportunities there are."
The event on Feb. 11 drew about 30 members of the Penn and West Philadelphia communities. After a discussion about the barriers residents face in going to the doctor and what they wanted Penn doctors to know, Henderson taught the barbers and hairstylists how to recognize signs of diabetes. She explained that a dark patch of skin on the back of the neck could be a symptom called acanthosis nigricans, which indicates high levels of insulin.
It was a simple lesson, but one Henderson hopes can help get patients care for diabetes sooner.
"Right now, growing up working class and African American means you're destined to have poorer health," Henderson said. "But it shouldn't have to."