Erin Gilmer, Disability Rights Activist, Dies at 38

She’s the first person to fight for a more compassionate health care system, bringing an extensive knowledge of policy and a lot more experience as a patient.

A lawyer and a 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. “posPre”: There was a woman of the same age who had the same exact name, social security number, and address as the one that died in the car accident.

Ms. Gilmer’s friend, who was in the Philippines at the time, said that her death was a suicide She was first in Texas and later in Colorado, where she had her own law practice, Ms. Gilmer has made it his priority to ensure that health care is responsive to the needs of patients, including a state law that gives pharmacists the ability to provide certain drugs 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 she even had some experience as a patient.

Her TED Talk, called “How not to cure disease,” was at a TED conference and on social media, where she used her own life to illustrate the degradations and difficulties inherent in the modern medical system. She believed patients and doctors alike were treated as cogs in a machine.

Erin Gilmer, Disability Rights Activist, Dies at 38
Erin Gilmer, Disability Rights Activist, Dies at 38

In addition to those conditions, she had several others, including rheumatoid arthritis, type 1 diabetes, borderline personality disorder, and occipital neuralgia. This patient had a long medical record and the doctors were used to seeing her in 15 minute appointments. She told the doctor she often felt she was treated like an ‘idiot’ simply because she wanted to be involved.

“Too often patients have to wonder: ‘Will they believe me?’” she wrote on Twitter in May. “Will they cause them more trauma? Will they listen and understand?

She had to work so hard, despite having a law degree, she said, she had to rely on food stamps. She acknowledged that her race gives her the privilege to cut corners.

“When I couldn’t figure out how to make ends meet, I would disguise myself in my nice white-girl clothes 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 can’t think of a better example of that than this. Patients die trying to get food, medicine, housing, and medical care. “You should have died a long time ago. It’s all so exhausting and frustrating and degrading.

She was fierce, especially when people presumed to explain her problems to her or offer a quick-fix solution. She created a following among people with similar illnesses, people who saw her as both an ally and an inspiration. They learned how to navigate the system for themselves, and made it work for them.

“Before, I thought I had no choice,” said Tinu Abayomi-Paul, a disability rights activist who became involved after she met Ms. In 2018, Gilmer in a phone interview said, “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 emphasized the importance of trauma-informed care. She called for the medical system to recognize that many patients enter the intimate space of the doctor’s office already traumatized, and that the experience of being in the doctor’s office can be traumatic for many patients. She wrote a handbook called “A Preface to Advocacy” which she shared online, for free.

“She was expecting the system to fail her. But instead of failing her, it was going to help 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.

Erin Michelle Gilmer was born in 1982. She grew up in a suburb of Denver, near Aurora. Thomas, a doctor and Carol, a pharmacist, were divorced when she was 19. She later became estranged from her father and her mother.

Besides her parents, Ms. Gilmer is survived by her brother, Christopher.

Ms. Gilmer, a competitive swimmer as a child, developed a number of health problems in high school. After surgery, her jaw was wired shut, her rotator cuff was torn, and she suffered from post-traumatic stress disorder.

A star student, she graduated with enough advanced placement credits to skip a year of college at the University of Colorado. She’s a graduate of the prestigious Smith College in Northampton, MA and she graduated summa cum laude in 2005.

I decided to stay in college, to continue my education, so that I could maintain my student health insurance, which is a cruel joke. 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 graduated from college 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 this time her health had started to decline, and her existing conditions were worsening as well as showing up new ones. The accident in 2010 left her with multiple injuries. She found it hard to work a full day and eventually much of her advocacy was virtual, including via social media.

She is a master of health care policy, and she understands the need for reform Gilmer said what the system needed was more compassion.

“You’re talking to a professional in the field.” We can say, “Hello. I’m a Montori, and we can help with all of those things at the small micro levels of just saying. “Yes, I’m glad you’re here.’”

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