In Floor Speech, Pressley Discusses Challenges of Living with Alopecia, Honors
Rio Allred, 12-Year-Old Indiana Girl Lost to Suicide

“I make no appeal today for sympathy, but for empathy, for support, to be seen.
I am not here just to take up space. I’m here to create it.”

Video (YouTube) | Amendment Text (PDF)

WASHINGTON – Today, the House of Representatives passed an amendment introduced by Congresswoman Ayanna Pressley (MA-07) to require the Department of Health and Human Services to study the suicide crisis among children living with chronic illnesses and conditions, including auto-immune diseases like alopecia.

Prior to passage, Rep. Pressley delivered an impassioned floor speech in which she discussed the challenges of living with alopecia, honored Rio Allred—a 12-year-old girl from Indiana who died by suicide after facing relentless bullying due to her alopecia—and urged her colleagues to support her amendment.

A full transcript of her remarks is available here, and the full video is available here.

Transcript: Rep. Pressley Urges Passage of Amendment to Address Suicide Crisis for Children with Alopecia, Other Chronic Illnesses
U.S. House of Representatives
June 22, 2022

Thank you, Madam Chair.

I rise today in support of my amendment to require the Secretary of Health and Human Services to study the suicide crisis among children living with chronic illnesses and conditions, including auto-immune diseases like alopecia.

Across this nation, our children are carrying unprecedented amounts of trauma and grief in their emotional backpacks. 

And for an entire generation of youngsters living with chronic conditions—the solitude, grief and uncertainty of the past two years have only exacerbated the emotional and mental health challenges that already weighed so heavily.

Like millions of Americans, I am living with the auto-immune disease alopecia. There are several forms of alopecia. I’m living with alopecia universalis.

Navigating the world as a bald woman is disruptive to many. I’m 48 years old, I’m an adult, and I have built up some pretty thick skin, but there are days that even bring me to my knees because of the social stigmatization, the bullying, the taunting that I’ve experienced as an adult.

And although this does not threaten my life, that does not mean that it does not impact it. 

I was a caregiver to my mother in her cancer battle and her very first concern and worry, even though she was fighting for her life, was “Am I going to lose my hair?”

This is something much more than cosmetic for all who are living with this, and certainly for women there’s an added layer—and girls—in that this challenges and defies societal norms of what is feminine, what is pretty, what is acceptable, and what is appropriate.

And for millions of children—again, I’m a 48 year old adjusted woman. But for the millions of children living with this disease, the challenges may sometimes feel too much to bear.

While there are public misconceptions that Alopecia is “purely cosmetic,” the fact is that the National Institute of Mental Health has found that Alopecia Areata has been linked to higher rates of depression, sadness, anxiety and other mental health challenges.

Some have offered, “why not just wear a wig?” Well, I’m working on that too, because many of our children can’t afford a medically durable wig. 

So for children who are just beginning their journey growing comfortable in their own skin and finding their place in the world, these challenges can feel even harder.

Earlier this year, our Alopecia community lost one of our own. She’s not the first, but one of the most recent.

Ms. Rio Allred—may she rest in peace—twelve years old. Took her life by suicide because of the emotional turmoil and relentless bullying she faced every day in school due to her alopecia.

I have spoken to Rio’s mother, I have heard her express the pain no parent should ever know. I asked her to tell me about Rio. She was a great big sister, a writer, a reader, who was funny and a light to the world and all around her. 

Her mother has now established Rio’s Rainbow, a foundation in her honor, and the mission of that, in Rio’s honor, is that kids should feel safe being who they are. 

One life lost to the emotional distress associated with this disease, and any chronic condition for that matter, is one too many.

I make no appeal today for sympathy, but for empathy, for support, to be seen.

I am not here just to take up space. I’m here to create it.

I choose not to wear a wig because I know what that representation means to the millions of Americans who are living with alopecia.

It is long past time that we study the troubling suicide crisis among children living with chronic illnesses and conditions—including those within our Alopecia community—and invest in the early interventions and best practices necessary to save lives.

I urge my colleagues to support this amendment, which would do just that.

Thank you, I yield back. 

—

Since revealing her alopecia diagnosis, Rep. Pressley has become a leading voice fighting to raise awareness and support for the alopecia community across the nation.

Rep. Pressley is a lead sponsor of the CROWN Act, legislation she led with Reps. Bonnie Watson Coleman (NJ-12), Gwen Moore (WI-04), Barbara Lee (CA-13) and Ilhan Omar (MN-05) that would ban discrimination based on hair textures and hairstyles that are commonly associated with a particular race or national origin. She delivered a passionate floor speech in support of the CROWN Act prior to its passage in the House in March 2022.

In September 2021, Rep. Pressley and Rep. Jim McGovern (MA-02) led their colleagues in re-introducing the Wigs as Durable Medical Equipment Act, legislation to help individuals affected by Alopecia Areata and patients with cancer who are undergoing chemotherapy by allowing medical wigs and other head coverings to be covered under the Medicare program.

In 2020, the House passed an amendment introduced by Congresswoman Pressley to provide $5 million dollars for the National Institutes of Health’s National Institute of Arthritis and Musculoskeletal and Skin Diseases to fund research on the causes, impacts, and possible treatments of Alopecia areata.

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