Surgeon denied my sister care because of 'low quality of life.' She proved him wrong.

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When my older sister was 6 years old, she needed surgery to rebuild her chest, which was caving in and beginning to crush her organs. The surgeon at our local children’s hospital who was most qualified to perform it declined, saying Heidi had too low a quality of life to be worth his time.

What had Heidi, with dark brown hair that our mom arranged with brightly colored bows, done to offend him? What had Heidi, who giggled and bopped around the community swimming pool with assistance from her bright red plastic innertube, done to be deemed unworthy of medical care?

Only this: She was born with physical and intellectual disabilities stemming from having the rare disease microcephaly. Up to 7,000 rare diseases or conditions affect fewer than 200,000 people in the United States. At least 25 million people are living with a rare disease in our country.

For people like the surgeon, her differences were enough to discount her life.

Thankfully, our mom was never deterred by ignorant people, and she found a pediatric surgeon who was willing to operate on Heidi even though it was not his specialty. The surgery helped to double her lifespan to 12 years. Her life improved and was prolonged because the second surgeon saw her worth.

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During those six additional years, she learned to drive an electric wheelchair and gain more independence. She thrived at school and her special summer camps. She went on vacations with us to see relatives and visit places like San Francisco, Myrtle Beach and the Rocky Mountains. Her mischievous side came out at the dinner table when she’d sneakily stick out her arm to knock off her plate and silverware. And she happily played with me, our younger sister, Mary, and our neighborhood friends.

This is the life the surgeon deemed too “low quality” to be worth saving. 

For me, she was my first playmate and best friend. Her differences didn’t deter us from becoming close. We did puzzles together, with her sliding pieces toward me to place. We played with our Barbies, blocks and magnets side by side on our family room floor. Every day, I kissed her hand and signed “I love you” to her, and she’d smile and laugh and wave her hands in the air to show she cared about me, too.

While this “low quality of life” statement about my beloved sister Heidi was uttered in the late 1980s, some people hold on to this belief today, harming persons with disabilities and rare diseases.

CDC director's remarks were hurtful

In January, Centers for Disease Control and Prevention Director Rochelle Walensky gave an interview on "Good Morning America" saying a new study showed that a disproportionate number of deaths due to COVID-19 occurred among people who had four or more comorbidities – meaning they had disabilities, or, as she termed it, were “unwell to begin with.” She said this was “encouraging news” that vaccinations protect the vast majority of people.

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In other words, it was reassuring that it was mostly “only” the “unwell” or disabled people who are dying, as if their lives don’t matter. Later, under pressure from disability rights groups, she apologized, but not before writer and activist Imani Barbarin started what became a viral hashtag #MyDisabledLifeIsWorthy.

In the medical realm, in late 2020, NPR correspondent Joseph Shapiro reported on cases in the early months of the COVID-19 pandemic where persons with disabilities were denied ventilators and other care at hospitals. One physician NPR quoted even described the “low quality of life” of a person with a disability as to why, using the same words the surgeon did more than 30 years ago about Heidi.

Research published in 2021 by physicians for patients with disabilities found that “stereotypes, assumptions, and biases about the quality of life of people with disabilities are pervasive throughout health-care, resulting in the devaluation and disparate treatment of people with disabilities.” 

They addressed COVID-19 specifically, urging hospitals to emphasize disability equity in the development and implementation of COVID-19 policies, especially after it came to light that some were not.

People with disabilities denied care

A few months before the COVID-19 pandemic began, in late 2019, the National Council on Disability (NCD) produced a report for the White House showing that persons with disabilities routinely face unequal access to medical care, which can affect their health and even decrease their life expectancy.

No one should be allowed to deny care or offer them subpar care because of a person’s disability or rare disease. Yet clearly, too often, that happens.

I’m now the mother to a 3-year-old who has three rare diseases and a disability. He has had scores of hospital visits in four states and Washington, D.C., and he will have his 12th surgical procedure soon. I’m grateful to every medical professional who has helped him thrive so far, but I know that unless there are systematic changes, he may face discrimination one day just like Heidi did. And that is not OK.

Guidance for improvement is available. For instance, the NCD made recommendations to Congress, federal agencies and insurers for how to ensure more equitable care. Physicians for patients with disabilities suggested creating system-level decision algorithms that value the life of people with disabilities, for then “clinician biases are minimized, leading to more equitable care.”

After the CDC director’s comments in January, more than 150 disability rights groups offered their feedback, too. For Rare Disease Day on Monday, I urge entities that have not already done so to consider and incorporate these guidelines and suggestions to improve and save lives.

Holly Kearl is a community manager at the Aspen Institute, an author and the founder of Stop Street Harassment. She serves on Virginia’s inaugural Rare Disease Advisory Council.