Updated: Aug 8, 2019
On the morning of July 4th, Jazmine Baldwin had little cause to celebrate.
Her family had buried her sister, Jada Louis, less than two weeks ago, and she was still trying to process why her sister had to die because she couldn’t afford a lifesaving medication. In a telephone interview conducted on a day when others were heading to parades and cookouts, Baldwin felt it was important to share the story of how her sister died.
“I want as many people to know about it as humanly possible,” Baldwin said.
Jada Renee Louis, who had type 1 diabetes, died on June 22nd, 2019 at the age of 24, roughly a week after a stay in a Virginia hospital for treatment for diabetic ketoacidosis (DKA) and a foot ulcer. It was there that Baldwin first learned her sister had been skipping her insulin doses because of the cost, a fact that Louis had been reluctant to tell the doctors. Baldwin then asked her sister why she didn’t ask family for help.
“She said she didn’t feel comfortable asking for that much money from anybody,” Baldwin said. “I asked her how much it was, and she said $300.”
Baldwin said they would find the money. Louis was discharged from the hospital in mid-June after a long stay, and Baldwin, who lives in North Carolina, checked in on her sister remotely.
“She seemed to be in good spirits. She said she had all the medical supplies that she would need, including medication,” Baldwin said. “I really don’t know what happened over the course of that week.”
Louis’s family has set up a GoFundMe campaign to help pay the bills for the funeral.
While the funeral services and burial cost are roughly $9,000, the campaign is asking for $7,000 to take into account offline donations from family, Baldwin said.
“We haven’t even touched the medical bills,” Baldwin said. “Those haven’t come through yet.”
“She was always happy, always smiling.”
It is difficult to find a photo of Jada Louis where she isn’t smiling. Even those rare photos taken of her without a smile, where Louis is making a silly face, are inclined to make one smile.
That is just how Louis was, said Rebekah Harris, one of her lifelong friends. Louis, who was well over six feet tall, was described by family and friends as very outgoing and kind, someone who could fill up the room with her friendly presence.
“She was always happy, always smiling, would be there for you, give you the shirt off her back, really kind, really down to earth, just, like, really goofy,” Harris said.
Harris and Louis first met when both were in third grade at McIntosh Elementary School in Newport News, Virginia. They bonded instantly, and Harris says Louis felt like her twin.
Louis had a flare for the dramatic arts, and was frequently a performer in school performances throughout elementary and middle school. She eventually went to a magnet program for the arts at a local high school. After graduation, Louis worked for Walmart and at a call center before landing a job most recently at a movie theater in neighboring Hampton, Virginia.
Louis was diagnosed with type 1 diabetes at the age of seven, a few years before she met Harris. Throughout her life, she managed her blood sugar with multiple daily injections and by getting her blood sugar readings from a handheld meter. Harris said that early on in their friendship she became aware of Louis’ diabetes because Louis’ mother would stop their playtime to remind Louis to “take your medicine”. However, Louis didn’t talk too much about life with type 1 diabetes, and Harris wanted to respect her privacy.
“It wasn’t really talked about much while we were hanging out,” Harris said. “I knew she had it, but that was my best friend, so I didn’t want to be bringing it up.”
Louis was never one to willingly bring up what troubled her in life, Harris said. Family and friends were caught off guard by her hospitalization, and had been unaware with her struggles to afford insulin and the issues with her foot.
“She is like a tough cookie, basically,” Harris said. “She won’t let you know when something is wrong. You would never think anything is wrong.”
“It’s really a kick in the face.”
Something was wrong, though. In early June, Louis grew extremely nauseous and began vomiting uncontrollably. She was admitted to the hospital for treatment for DKA, a potentially fatal condition caused by extremely high blood sugar levels. When she was admitted, doctors discovered she also had a foot ulcer that required surgery to save the foot.
Baldwin, a nurse technician, heard of her sister’s hospitalization and understood that it meant that Louis wasn’t regularly taking the insulin she needed to survive. She went to visit Louis in the hospital, and was alarmed to find that her sister was barely communicating with her team of doctors.
“She seemed very uninterested in anything they had to say, but I was able to get her talking,” Baldwin said.
Louis revealed to her sister that she had stopped taking insulin because of the cost. She was afraid that if she filled her prescription, she wouldn’t be able to afford a roof over her head.
She often lacked insurance, and no one in the family knew exactly how she had been regularly affording insulin up until her hospitalization. Baldwin believes that Louis’ grandmother, who passed away in 2018, had been helping her out financially. Once the money from her grandmother ran out, Louis didn’t want to ask anyone else in the family for help, Baldwin speculates.
“All of us are, actually, really bad about just letting other people know when we need some kind of help or when something is wrong in my family,” Baldwin said. “We’re a little on the prideful side, which explains why she wouldn’t ask for $300 for literal life-saving medicine.”
Baldwin believes her sister also was suffering from depression, and she asked a nurse to have a case manager talk to Louis about options for mental health therapy.
This was a good step to take, says Jane K. Dickinson, a certified diabetes educator who is part of the T1D Exchange Quality Improvement Collaborative, a collective of health care providers and patients which strive to improve type 1 diabetes care. Studies show that people with type 1 diabetes are more prone to depression than the average population, and untreated depression can hinder blood sugar management.
“Identifying and treating depression is a priority, because depression can directly and negatively affect one’s ability to manage diabetes,” Dickinson said.
After surgery, Louis was discharged with an IV drip still attached to her and sent home. She died just over a week later.
Since then, Louis’ family learned things they wished they had known earlier, including the fact that Walmart sells an older formulation of insulin over the counter for a very low cost.
While this insulin is not as effective for the management of blood sugar levels as the higher-priced insulin that is regularly prescribed, it could have been a stopgap measure until Louis was enrolled in other services to help her regularly afford insulin.
The family also learned after Louis’ death that the three major insulin manufacturers have financial assistance programs which, while sometimes difficult to enroll in, might have also provided needed help. Learning about these options after Louis’ death was extremely difficult, said Baldwin.
“It’s really a kick in the face,” she said.
The funeral was packed, Facebook tributes poured in for Louis, and the family is in mourning. Baldwin is left trying to make sense of how, in the United States, her sister could die because she couldn’t afford the one medicine she needed to survive.
“The second she had to make the decision whether to pay rent or buy insulin, that’s where it went downhill,” Baldwin said. “She literally had to decide whether she wanted to live or have a home. That’s not a choice that anyone should have to make. Those things are basic human rights, and she had to choose between them.”