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Disability Rights Activist Dies, Obit Says Insurance Company Denied Her Medication

Carrie Ann Lucas — an attorney and well-known disability rights activist best known for pioneering representation for parents with disabilities — died Sunday at the age of 47 in her hometown of Windsor, Colorado.

According to her obituary, which was posted to her Facebook page, Lucas passed away due to complications that occurred “after an arbitrary denial from an insurance company caused a plethora of health problems, exacerbating her disabilities and eventually leading to her premature death.”

Carrie Ann Lucas in 2004.

Carrie Ann Lucas in 2004.

“We are saddened to hear of Ms. Lucas’s passing,” a representative from United Healthcare, Lucas’ insurer, told HuffPost in an email. “Our care advocates and clinical teams work extensively with members suffering from chronic conditions and their families to help these individuals get access to care covered under their plans.”

Activists and advocates of the disability community expressed their sadness while honoring Lucas online.  

Lucas had a rare form of  muscular dystrophy, used a power wheelchair, breathed with the assistance of a ventilator, had low vision and was hard of hearing. In January 2018, she got a bad cold, which turned into a trach and lung infection. United Healthcare refused to pay for a specific medication she needed, her obit says. She took a “less effective” drug instead and had a bad response to it, losing function including her speech.

“… Her insurance company thought that the medication she needed to recover from a lung infection was too expensive and instead approved a drug that would lead to her loss of speech and her eventual death,” Rebecca Cokley, director for disability policy at the Center for American Progress and a friend of Lucas’, wrote for the advocacy site Disability Visibility Project. “Carrie Ann Lucas died to save $ 2,000, even though it ended up costing the insurance company over $ 1 million to try and salvage their error.”

Dr. Kimberly Jackson, Lucas’ partner, told the Fort Collins Coloradoan that Lucas went into cardiac arrest Wednesday and died from complications from an infection.

“She was an amazing person who dedicated her whole life to helping other people and I just miss her so much and so will the disability community,” Jackson told the outlet. “We have a similar disability and she understood me like no one has before.”

Access to health care was an important issue for Lucas. As a member of ADAPT — a national disability-rights organization — Lucas and other members gained national attention in June 2017 after they were arrested for staging a sit-in inside the office of Sen. Cory Gardner (R-Colo.) that lasted nearly 60 hours. The group was protesting attempts by the GOP to repeal the Affordable Care Act, which would have resulted in decreased Medicaid funding and jeopardized services that allow people with disabilities to live independently in their communities. It would have also created large tax cuts for the wealthy.

“It’s been really hot and cramped in here, but we’re not leaving until we get a commitment that Sen. Gardner will vote no,” Lucas told Vox not long before the arrests.

Lucas is best known, however, for her work fighting for the rights of disabled parents. It began when a social worker told her that because of her disability, she could not adopt her niece, Heather, who had intellectual disabilities and was in foster care. Although she convinced a judge she was capable of raising her niece, and went on to adopt three more children with disabilities, the frustration she experienced led her to go to law school.

Upon graduation in 2005 from the University of Denver School of Law, she was awarded the prestigious Equal Justice Works fellowship to create a program that fought discrimination against parents with disabilities. This program eventually turned into Disabled Parents Rights, one of the only organizations in the country devoted to this issue.

HuffPost reached out to Lucas’ family for comment, but did not receive an immediate response.

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