Erin Gilmer, a disability rights advocate and activist who campaigned for medical privacy, lower drug prices, and a more compassionate health system when faced with a cascade of illnesses that left her unable to work for long periods of time or even left her in bed, died Jan. July in Centennial, Colorado. She was 38 years old.
Anne Marie Mercurio, a friend who had given Ms. Gilmer a power of attorney, said the cause was suicide.
First in Texas and later in Colorado, where she ran her own law firm, Ms. Gilmer pushed for legislation that would better tailor health care to patient needs, including a state bill passed in 2019 that allows Colorado pharmacists to sell certain drugs without a current prescription, if the patient’s doctor cannot be reached.
She has been a frequent consultant to hospitals, universities, and pharmaceutical companies, bringing with her extensive knowledge of health policy and even broader first-hand experience as a patient.
At conferences and on social media, she used her own life to illustrate the humiliations and difficulties she felt were inherent in the modern medical system, where patients and doctors alike were treated like cogs in a machine.
Her conditions included rheumatoid arthritis, type 1 diabetes, borderline personality disorder, and occipital neuralgia, which causes severely painful headaches. Her long medical record challenged doctors who were used to approaching patients on 15-minute visits, and she said it was often dismissed as “difficult” just for trying to stand up for herself.
“Too often patients have to ask themselves: ‘Will they believe me?'” She wrote on Twitter in May. “’Will you help me? Will they cause further trauma? Will they listen and understand? ‘”
She often spoke of her financial troubles; Despite her law degree, she is dependent on food stamps. But she admitted that her breed gave her the privilege of cutting curves.
“In the months when I couldn’t make ends meet, I dressed up in my pretty white girls’ clothes and went to the salad bar and asked for a new plate as if I had already paid for it,” she said in a speech to a medical doctor in 2014 Conference at Stanford University.
“I’m not proud of it, but I’m desperate,” she added. “It’s about survival of the fittest. Some patients die trying to get food, medicine, shelter, and medical care. If you don’t die on the way, you honestly wish you could because it’s all so exhausting and frustrating and humiliating. “
It could be violent, especially when people presumed to explain their problems to her or offer a quick fix. But she also developed a following among people with similarly complicated health conditions whom she saw as both allies and inspiration and showed them how the system worked for them.
“I used to think I had no choice,” said Tinu Abayomi-Paul, who became a disability rights activist after meeting Ms. Gilmer in 2018, over the phone. “She was the first to show me how to address medicine as an institution and not be written off as a difficult patient.”
Ms. Gilmer emphasized the need for trauma-informed care and urged the medical system to recognize not only that many patients enter the private parts of an already traumatized doctor’s office, but also that the health care experience itself can be traumatizing. Last year she wrote a handbook called “A Preface to the Legal Profession: What You Should Know As a Lawyer,” which she made available online for free.
“She expected the system to fail,” said Dr. Victor Montori, an endocrinologist at Mayo Clinic and founder of Patient Revolution, an organization that supports patient-centered care. “But she tried to make it so that the system wouldn’t let other people down.”
Erin Michelle Gilmer was born on September 27, 1982 in Wheat Ridge, Colorado, a suburb of Denver and grew up in nearby Aurora. Her father, Thomas S. Gilmer, a doctor, and her mother, Carol Yvonne Troyer, a pharmacist, divorced when she was 19 and she became estranged from them.
In addition to her parents, Mrs. Gilmer also left her brother Christopher.
Ms. Gilmer, a competitive swimmer as a child, began developing health problems in high school. She had jaw and rotator cuff surgery, her father said in an interview, and she also developed signs of depression.
A star student, she graduated with enough credit to skip a year of college at the University of Colorado, Boulder. She studied psychology and economics and graduated in 2005 with summa cum laude.
She decided to continue her law school at the University of Colorado 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 and trained as both a policy expert and an activist; She later mentioned health as a human right on her blog.
She graduated in 2008 and moved to Texas where she worked for the state government and a number of health care nonprofits. In 2012 she returned to Denver to open her own practice.
At this point, her health began to deteriorate. Her current condition worsened and new ones occurred, exacerbated by an accident in 2010 in which she was hit by a car. She found it difficult to work a full day, and eventually most of her advocacy was virtual, including through social media.
For all her mastery of the intricacies of health policy, Ms. Gilmer said that the system needed more compassion most of all.
“We can do this on a large scale by introducing trauma-informed care as a practice,” she said in an interview with Dr. Montori. “And we can do that on the small micro level by just saying, ‘How are you today? I am here to listen I’m glad you’re here. ‘”
If you have thoughts of suicide, call the National Suicide Prevention Lifeline at 1-800-273-8255 (TALK). For a list of additional resources, see SpeakingOfSuicide.com/resources.