Restoring Hope for Mental Health and Well-Being Act of 2022

Floor Speech

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Ms. PRESSLEY. Madam Speaker, I rise today in support of my amendment to require the Secretary of Health and Human Services to study the suicide crises among children living with chronic illnesses and conditions, including autoimmune diseases like alopecia.

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

For an entire generation of youngsters living with chronic conditions, the solitude, grief, and uncertainty of the past 2 years have only exacerbated the emotional and mental health challenges that already weighed so heavily.

Like millions of Americans, I am living with the autoimmune disease alopecia. There are several forms of alopecia. I am living with alopecia universalis.

Navigating the world as a bald woman is disruptive to many. I am 48 years old, I am 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 experience as an adult.

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. Certainly, for women and girls, there is an added layer, in that this challenge defies societal norms of what is feminine, what is pretty, what is acceptable, and what is appropriate.

For the millions of children--again, I am 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 areata is purely cosmetic, the fact is the National Institute of Mental Health has found that alopecia areata has been linked to higher rates of depression, sadness, anxiety, and other mental challenges.

Some have offered: Why not just wear a wig? Well, I am 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 is not the first, but one of the most recent: Miss Rio Allred. May she rest in peace. She was 12 years old, and 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, 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 am here to create it. I choose not to wear a wig because I know what that representation means to the millions of Americans that 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.

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