by Avani R

Across the country and around the world, millions of children have scoliosis. Scoliosis is the sideways curving of the spine, and it is the most common spinal condition impacting children and teens. Many of them deal with back pain, and it can be hard to get the right help because treatment isn’t always easy to find or affordable. For my senior year research project, I focused on the lack of access to adequate scoliosis treatment and how to change it. I wanted to share what I learned from my project.

What's the Issue?

Adolescent idiopathic scoliosis (AIS) is the most common type of scoliosis, and it affects kids and teens ages 10–18 [1]. Doctors don’t know exactly why it happens, but it affects about 1–3% of all adolescents [2]. Treatment is important because it helps keep the curve from getting worse and causing problems later in life. But there are challenges when it comes to getting and going through treatment. 

Not everyone has the same access to scoliosis care. One study found that AIS patients who lived in rural areas or didn’t have insurance were more likely to have complications after surgery compared to others [3]. Another study showed that Black patients—who often had lower incomes in the study—had to wait longer for treatment, which meant their scoliosis was usually more severe by the time they got help [4].

Even for patients who do get treatment, there are still struggles. A survey across the U.S. found that 58% of AIS patients had been diagnosed with a mental health disorder [5]. Another study showed that more than half of brace-wearers (55%) were in pain every night, and many said their pain lowered their quality of life [6].

There are a few reasons for these challenges. Bracing and surgery can be very expensive [7][3], and some patients live far away from clinics that specialize in scoliosis. On top of that, treatment often doesn’t fully address the mental health side of scoliosis, like anxiety, depression, or body image [6][5]. Finally, there just isn’t enough research or information about AIS—how it relates to mental health, back pain, or family income [1][5][8][6][4].

All of this means that many AIS patients may deal with pain, stress, and mental health challenges. One study found that anxiety and depression could be linked to chronic pain [8]. Treatment also puts a financial burden on families, which makes it even harder [3].

What Can We Do?

1. Federal Activism

One way to approach the issue is trying to change access to care on a federal level. I found two pieces of legislation that could improve access to scoliosis treatment.

One of the main causes of the issue is the lack of knowledge on scoliosis and related problems. The Advancing Research for Chronic Pain Act of 2024 was a bill that wanted to increase research about chronic pain [9]. Since some individuals with scoliosis present with chronic pain, learning more about it can also improve treatments for scoliosis and reduce disparities in access to chronic pain and scoliosis treatment.

Another important bill is The Health Equity for People with Disabilities Act, which aimed to increase healthcare equity for disability treatment [10]. This would mean that access to treatment for individuals with physical impairments would increase. The bill would help access to scoliosis treatment, too.

To learn more about these bills, you can read about them here:

• https://uspainfoundation.org/news/how-will-having-better-data-actually-help-patients/
• https://aahd.us/wp-content/uploads/2023/05/HealthEquityforPeoplewDisability-SenCaseyand5cosponsors-04282023Caseyonepager.pdf

Unfortunately, these bills didn’t pass in the last session of Congress, but they can be reintroduced. By writing to and calling your representatives in Congress, you can increase support for these bills and help get them back into Congress and eventually passed! Click here to find your local representative's contact information.

2. Community Activism

To help with the issue more directly, you can volunteer or help raise awareness. One way to do this is to work with Scolios-us! If you have scoliosis, you can volunteer as a mentor in their Scolios-us Mentor Program, share your story in a blog post, or be featured on an episode of The Scoli Squad Podcast. 

But even if you don’t have a personal connection to scoliosis, you can still promote early detection by raising awareness in your community. Learn the signs of scoliosis and educate others by bringing scoliosis awareness materials to your local schools, libraries, gymnastics gyms, dance studios, and more! You can also participate in the Annual Scolios-us Brace Design Contest, which takes place every June and is a great way to raise awareness for scoliosis.

The Takeaway

Scoliosis can be tough, but you're tougher! By raising awareness, you can highlight the inequalities of scoliosis care and help to make it more accessible for those in need! Use your voice and help us make a change!

References

[1] Thomas, Joshua J., et al. “Trends in Incidence of Adolescent Idiopathic Scoliosis: A Modern US Population-based Study.” Journal of Pediatric Orthopaedics, vol. 41, no. 6, July 2021, journals.lww.com/pedorthopaedics/abstract/2021/07000/trends_in_incidence_of_adolescent_idiopathic.2.aspx.

[2] Menger, Richard P., and Anthony H. Sin. “Adolescent Idiopathic Scoliosis.” StatPearls, 3 Apr. 2023. National Library of Medicine, www.ncbi.nlm.nih.gov/books/NBK499908.

[3] Garcia, Steven M., et al. “Socioeconomic Differences in Access to Scoliosis Care in the Pediatric Population.” Spine Deformity, vol. 12, no. 6, 19 June 2024, link.springer.com/article/10.1007/s43390-024-00912-0.

[4] Alsumait, Abdulaziz, et al. “Socioeconomic Factors Correlation With Idiopathic Scoliosis Curve Type and Cobb Angle Severity.” Cureus, vol. 15, no. 2, 14 Feb. 2023, www.cureus.com/articles/133990-socioeconomic-factors-correlation-with-idiopathic-scoliosis-curve-type-and-cobb-angle-severity.

[5] Chen, Jeffrey W., et al. “Evaluating the Prevalence of Psychiatric Comorbidities Associated with Pediatric Scoliosis Utilizing ResearchMatch.” Spine Deform, 12 Aug. 2024. Springer Link, link.springer.com/article/10.1007/s43390-024-00926-8.

[6] An, Juhyung K., et al. “Back Pain in Adolescent Idiopathic Scoliosis: A Comprehensive Review.” Journal of Children’s Orthopaedics, vol. 17, no. 2, 3 Feb. 2023, journals.sagepub.com/doi/10.1177/18632521221149058.

[7] Lovering, Nancy. “Everything to Know About Scoliosis Braces.” Medical News Today, 4 Aug. 2023, www.medicalnewstoday.com/articles/scoliosis-braces.

[8] Mitsiaki, Ioanna, et al. “Adolescent Idiopathic Scoliosis and Mental Health Disorders: A Narrative Review of the Literature.” Children, vol. 9, no. 5, Apr. 22, 2022, www.mdpi.com/2227-9067/9/5/597.

[9] United States, Congress, House. Advancing Research for Chronic Pain Act of 2024. Congress.gov, www.congress.gov/bill/118th-congress/house-bill/7164/text. 118th Congress, 2nd session, House Resolution 7164, Introduced 31 Jan. 2024.

[10] United States, Congress, House. Health Equity for People with Disabilities Act. Congress.gov, www.congress.gov/bill/118th-congress/house-bill/7503/text. 118th Congress, 2nd session, House Resolution 7503, Introduced 29 Feb. 2024.

Meet Avani

Avani is a college freshman from the San Francisco Bay Area. She was diagnosed with scoliosis when she was ten and wore a back brace for four years. She's excited to help share scoliosis stories as Blogging Committee Chair for Scolios-us! She likes writing, theater, and snails.

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