Erin Gilmer, a lawyer and disability rights activist who fought for medical privacy, lower drug prices and a more compassionate health care system as she confronted a cascade of illnesses that left her unable to work or even get out of bed for long stretches, died on July 7 in Centennial, Colo. She was 38.
Anne Marie Mercurio, a friend whom Ms. Gilmer had given power of attorney, said the cause was suicide.
First in Texas and later in Colorado, where she had her own law practice, Ms. Gilmer pushed for legislation that would make health care more responsive to patients’ needs, including a state law, passed in 2019, that allows pharmacists in Colorado to provide certain medications without a current prescription if a patient’s doctor cannot be reached.
She was a frequent consultant to hospitals, universities and pharmaceutical companies, bringing an extensive knowledge of health care policy and even more extensive firsthand experience as a patient.
At conferences and on social media, she used her own life to illustrate the degradations and difficulties that she said were inherent in the modern medical system, in which she believed patients and doctors alike were treated as cogs in a machine.
Her conditions included rheumatoid arthritis, Type 1 diabetes, borderline personality disorder and occipital neuralgia, which produces intensely painful headaches. Her lengthy medical file presented a challenge to doctors used to addressing patients in 15-minute visits, and she said she often found herself dismissed as “difficult” simply because she tried to advocate for herself.
“Too often patients have to wonder: ‘Will they believe me?’” she wrote on Twitter in May. “‘Will they help me? Will they cause more trauma? Will they listen and understand?’”
She spoke often about her financial difficulties; despite her law degree, she said, she had to rely on food stamps. But she acknowledged that her race gave her the privilege to cut corners.
“In the months when I couldn’t figure out how to make ends meet, I would disguise myself in my nice white-girl clothes and go to the salad bar and ask for a new plate as if I had already paid,” she said in a 2014 speech to a medical conference at Stanford University.
“I’m not proud of it, but I’m desperate,” she added. “It’s survival of the fittest. Some patients die trying to get food, medicine, housing and medical care. If you don’t die along the way, you honestly wish you could, because it’s all so exhausting and frustrating and degrading.”
She could be fierce, especially when people presumed to explain her problems to her or offer a quick-fix solution. But she also developed a following among people with similarly complicated health conditions, who saw her as both an ally and an inspiration, showing them how to make the system work for them.
“Before, I thought I didn’t have a choice,” Tinu Abayomi-Paul, who became a disability rights activist after meeting Ms. Gilmer in 2018, said by phone. “She was the first to show me how to address the institution of medicine and not be written off as a difficult patient.”
Ms. Gilmer highlighted the need for trauma-informed care, calling on the medical system to recognize not only that many patients enter the intimate space of a doctor’s office already traumatized but also that the health care experience can itself be traumatizing. Last year she wrote a handbook, “A Preface to Advocacy: What You Should Know as an Advocate,” which she shared online, for free.
“She expected the system to fail her,” said Dr. Victor Montori, an endocrinologist at the Mayo Clinic and a founder of the Patient Revolution, an organization that supports patient-centered care. “But she tried to make it so the system didn’t fail other people.”
Erin Michelle Gilmer was born on Sept. 27, 1982, in Wheat Ridge, Colo., a Denver suburb, and grew up in nearby Aurora. Her father, Thomas S. Gilmer, a physician, and her mother, Carol Yvonne Troyer, a pharmacist, divorced when she was 19, and she became estranged from them.
In addition to her parents, Ms. Gilmer is survived by her brother, Christopher.
Ms. Gilmer, a competitive swimmer as a child, began to develop health problems in high school. She had surgery on her jaw and a rotator cuff, her father said in an interview, and she also developed signs of depression.
A star student, she graduated with enough advanced placement credits to skip a year of college at the University of Colorado, Boulder. She studied psychology and economics, and she graduated summa cum laude in 2005.
She decided to continue her education, at the University of Colorado’s law school, to keep her student health insurance — “a cruel joke,” she said in a 2020 interview with Dr. Montori. She focused on health law and human rights, training herself to be both a policy expert and an activist; she later called her blog Health as a Human Right.
She received her degree in 2008 and moved to Texas, where she worked for the state government and a number of health care nonprofits. She returned to Denver in 2012 to open her own practice.
By then her health was beginning to decline. Her existing conditions worsened and new ones appeared, exacerbated by a 2010 accident in which she was hit by a car. She found it hard to work a full day, and eventually most of her advocacy was virtual, including via social media.
For all her mastery of the intricacies of health care policy, Ms. Gilmer said what the system needed most was more compassion.
“We can do that at the big grand levels of instituting trauma-informed care as the way to practice,” she said in the interview with Dr. Montori. “And we can do that at the small micro levels of just saying: ‘How are you today? I’m here to listen. I’m glad you’re here.’”
If you are having thoughts of suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255 (TALK). You can find a list of additional resources at SpeakingOfSuicide.com/resources.
Erin Gilmer, Disability Rights Activist, Dies at 38 is written by Clay Risen for www.nytimes.com