Disability rights activist Erin Gilmer dies at 38
July 7 in Centennial, Colorado. She was 38 years old.
Anne Marie Mercurio, a friend to whom Ms Gilmer had given power of attorney, said the cause was suicide.
First in Texas and then Colorado, where she had her own law firm, Ms Gilmer pushed for legislation that would make healthcare more responsive to the needs of patients, including state law, passed in 2019, which allows Colorado pharmacists to provide certain medications without a prescription if a patient’s doctor cannot be reached.
She has often been a consultant to hospitals, universities and pharmaceutical companies, bringing in-depth knowledge of healthcare policy and even more extensive first-hand experience as a patient.
At conferences and on social networks, she used her own life to illustrate the degradations and hardships that she said were inherent in the modern medical system, in which she believed patients and doctors were treated like cogs in a machine.
Its conditions included rheumatoid arthritis, type 1 diabetes, borderline personality disorder, and occipital neuralgia, which produces intensely painful headaches. Her long medical record presented a challenge to doctors accustomed to treating patients on 15-minute visits, and she said she often found herself dismissed as “difficult” simply because she was trying to defend herself.
âToo often patients have to ask, ‘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 often spoke of her financial difficulties; despite her law degree, she said, she had to rely on food stamps. But she recognized that her race gave her the privilege of cutting corners.
âDuring the months I didn’t know how to make ends meet, I would dress up in my beautiful white girl clothes and go to the salad bar and ask for a new plate like I already paidâ, a- she declared. in a 2014 speech at a medical conference at Stanford University.
“I’m not proud of it, but I’m desperate,” she added. âIt’s the survival of the fittest. Some patients die trying to get food, medicine, shelter and medical care. If you don’t die along the way, you’ll sincerely wish you could, because it is all so exhausting, frustrating, and degrading. “
She could be fierce, especially when people pretended to explain her problems to her or offer her a quick solution. But she also developed an audience among people with equally complicated health issues, who saw her as both an ally and an inspiration, showing them how to make the system work for them.
âBefore, I thought I had no choice,â said Tinu Abayomi-Paul, who became a disability rights activist after meeting Ms. Gilmer in 2018 by phone. show how to approach the institution of medicine and not be seen as a difficult patient. “
Ms. Gilmer stressed the need to trauma-informed care, calling on the medical system to recognize not only that many patients enter the intimate space of an already traumatized doctor’s office, but also that the experience of healthcare itself can be traumatic. Last year she wrote a manual, “Preface to Advocacy: What You Need to Know as an Advocate, Which she shared online, for free.
“She expected the system to fail her,” said Dr Victor Montori, endocrinologist at the Mayo Clinic and founder of the patient revolution, an organization that supports patient-centered care. “But she tried to make sure the system didn’t fail others.”
Erin Michelle Gilmer was born September 27, 1982 in Wheat Ridge, Colorado, a suburb of Denver, and raised in nearby Aurora. Her father, Thomas S. Gilmer, physician, and mother, Carol Yvonne Troyer, pharmacist, divorced when she was 19, and she moved away 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 jaw and rotator cuff surgery, her father said in an interview, and she also developed signs of depression.
A star student, she earned enough advanced placement credits to skip a year of college at the University of Colorado at Boulder. She studied psychology and economics and graduated summa cum laude in 2005.
She decided to continue her education at the University of Colorado Law School to keep her student health insurance – “a cruel joke,” she said in a 2020 interview with Dr Montori. She has focused on health law and human rights, training to be both a policy expert and an activist; she later called her blog Health as a human right.
She graduated in 2008 and moved to Texas, where she worked for the state government and a number of nonprofit health care organizations. She returned to Denver in 2012 to open her own practice.
By this time, his health was starting to decline. His existing conditions worsened and new ones emerged, exacerbated by a 2010 accident in which she was hit by a car. She struggled to work an entire day, and ultimately most of her advocacy was virtual, including through social media.
Despite her mastery of the intricacies of health care policy, Gilmer said what the system needed most was more compassion.
âWe can do this at great levels by instituting trauma-informed care as a way to practice,â she said in the interview with Dr Montori. âAnd we can do it at small micro levels by just saying, ‘How are you doing today? I am 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/ressources.