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When Dinee Simpson, a surgeon-surgeon, sits in a consultation room with a patient, the patient is often joined by a spouse, children, or both.
Sometimes a meeting includes the cousins, siblings or friends of a patient – all those who weave a supportive tissue on which the patient will rely when receiving a new kidney, liver or pancreas.
And sometimes, especially if the patient is black, more than a century of mistrust towards the medical community also joins them.
"Patients told me that they knew that the transplant was experimental," Simpson said. "Patients even said that they knew whites had the preference for the time on the waiting list."
(Ni is true.)
"Patients tell me quite frankly that they know that things are unfair or experimental, and that they are the hardest to convince otherwise," Simpson said. "These are some of the most heartbreaking cases for me."
In some families, a deeply rooted betrayal, transmitted from generation to generation, can permeate visits to the doctor. It is the product of medical experiments widely practiced on slaves in the mid-nineteenth century, a product of Tuskegee's 40-year-old experiment, begun in 1932, which denied hundreds of black men a diagnosis or appropriate treatment for a debilitating disease. Existing quality medical care outside geographical reach.
Simpson understands this in her bones, even if she tries to do everything possible to quell this feeling of betrayal and help patients to leave it in the past.
Simpson, 40, is the first female African-American surgeon-grapher at Northwestern Memorial Hospital. March marks his one – year anniversary at the hospital. She is the only black female surgeon and transplant therapist in Chicago.
"I'm here to serve everyone," said Simpson, "But I think a specific population is at a disadvantage because of social problems, genetic predispositions, for many reasons. They need help, and I acknowledge that I can provide some of that help just by looking at what I look like. "
After finishing medical school at New York University, Simpson moved to Boston for a medical residency at Harvard University.
"I made people cry," she said. "Patients have taken me in his arms. The reaction was incredible, simply because I looked like them. I was only a trainee. At this point, I have no medical expertise or special medical experience. That sealed my path and pushed me in that direction. "
Simpson specializes in chemistry at Colgate University and was on the cusp of pursuing a career in discovering and finding new drugs when, during his last year of studies, his doctor discovered a suspicious mass. in his chest. She was operated on to have it removed.
"It was benign," she says. "But there was something so profound for me in what this surgeon had provided me. I was scared, I had strangers. And when I came out of this operation, I had an answer. I knew the mass was gone. It was really powerful for me.
She knew that at that time she wanted to go to medical school. But it was too late to apply for the following year, so she landed a job in a tech start-up in New York. The company collected data on how consumers were searching for health care information online, and then provided it to drug manufacturers to help them focus their marketing efforts.
"What I realized was that many ads did not talk to me or my family members," she said. "That's when I realized that health care really had to take into account people's culture."
The following year, she started medical school.
When she worked as a surgical resident at Brigham and Women's Hospital in Boston, she observed a kidney transplant from a living donor on the first day.
"That sold me," she says. "Later in the day, we organized a kidney assessment clinic and saw six patients. All six were African American. That has cut my breath. "
African Americans suffer from kidney failure at a rate three times higher than whites, according to the National Kidney Foundation, and account for 35% of all dialysis patients for kidney failure, whereas they account for approximately 13% of the American population.
Chronic liver disease and cirrhosis are among the leading causes of death among African Americans aged 45 to 64, according to the Centers for Disease Control and Prevention.
Now, Simpson works in a city whose population is made up of about 33% African-Americans and finds himself engaged in sometimes painful, sometimes transformative conversations.
"This country has a dark history and we remember it," she said. "What I'm trying to help remind patients is: it's the past, and we've come a long way. I'm not looking for anything to hide. I'm not trying to sweep anything under the carpet. But I also tell patients what literature says about their illness and how we can help them. "
Regardless of the patient's race, the transplant process is mysterious and incomprehensible.
People worry, Simpson said, of recovering only a fraction of their lives when they received a new organ.
"I told them," What were you doing six months before getting sick? We will take you back to that, "she said.
People are worried, she said, of being stuck on a waiting list for years and years.
Liver transplants, she explains, are not based on waiting time. Patients are assigned a model score for end stage liver disease (MELD), a scale ranging from 6 to 40, depending on the urgency of the disease. If a patient is suffering from an infection or trauma – a car accident or a broken bone – he or she can increase his MELD score because a diseased liver can not help the body heal as quickly as it should .
"You can never say for sure," You'll get an offer for the liver today, "said Simpson." But we know from experience that, typically, a patient with a MELD score of 40 will receive an offer very soon. "
Kidney transplants are prioritized by the time spent on the waiting list, and patients depend on dialysis while waiting for the donor kidney. The average wait time in Chicago is seven, Simpson said.
"This is one of the reasons why we are asking for living donations," she said.
Another subject surrounded by mystery.
"Even though, as a medical community, we have found ways to minimize risk for donors, people are scared," she said. "And most of the time, we think of a living donor, we think of a family member. Many of our middle-aged and older parents would never want to ask a child to donate a kidney.
As a mother (her sons are 6 and 9 years old), Simpson said he understood that.
"But what I always say to my patients who express this fear is that while I am a mother, I am also a girl," she said. "And I would be very angry at my parents if they did not give me the opportunity to make this decision for me to be a donor. I think it's an important message to convey, and it's not just about the African-American community. It's for everyone. "
In 2006, transplant surgeon Juan Carlos Caicedo participated in the launch of the Hispanic transplant program at Northwestern, which provides care and information in a culturally sensitive manner. Providers speak Spanish. They recognize the family hierarchy and ensure that consultation and decision-making include all key players.
"Our vision is to have something that reflects this for our African-American patients on time," Simpson said.
Simpson joined the board of the National Kidney Foundation of Illinois. She met with people from Gift of Hope, the non-profit agency that coordinates organ and tissue donation in northern Illinois and northwestern Indiana.
"I'm new to Chicago," she says. "I'm trying to meet different people in the community who have an interest or who have already done these things, whose mission is closely related to what I want to do."
Saving lives, that's it.
"Every article, every study I've read, patients want a doctor who will sit down and have a good time with them and talk to a level that they understand and answer their questions." said Simpson. "But we are a species where we judge first with our eyes, for better or for worse. So when people see someone who looks like them, especially when they are in a vulnerable situation, it helps. "
Helps to soothe fears. Helps to build trust. Help his patients hear him.
"My goal is to let the community know that we are here as a program," said Simpson. "We try to listen to the specific needs of specific groups, and we are receptive to their fears and concerns, and we want to help."
Join the Heidi Stevens Balancing Act Facebook group, where she hosts live chats every Wednesday at noon.
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