Patient Advocate Spotlight: Charis Hill

11.9.16

Charis Hill, of Sacramento, California, is a model, a blogger and an activist – as well as an outstanding advocate for people living with chronic diseases.

When she was 26 years old, Hill was diagnosed with Ankylosing Spondylitis (AS), an autoimmune disorder and form of arthritis. AS primarily affects the spine, causing inflammation of the spinal joints that can lead to extreme, chronic pain and, in most advanced cases, can cause new bone formation on the spine, causing it to fuse into a fixed, immobile position. While there is no cure, treatments can help to manage the pain, and biologic medications can slow or halt the disease’s progression.

Hill has also dealt with depression, anxiety and post-traumatic stress disorder over the years. Even so, throughout that time she has only increased her efforts to advocate for the chronically ill: testifying on a bill to create more transparency in drug prices for health insurance policies in California’s state exchange, attending advocacy summits and speaking to members of Congress in Washington, D.C., for the Arthritis Foundation; speaking on panels and at seminars about living with Ankylosing Spondylitis; representing patients with AS at the American College of Rheumatology’s annual meeting; leading support groups through the Spondylitis Association of America; facilitating patient-involved research with the International Foundation for Autoimmune/Autoinflammatory Arthritis; being interviewed by media outlets about issues affecting people with chronic disease; writing about these issues on her blog, “BeingCharis: A Voice For Many.”

She even uses modeling to raise awareness.

“As a professional model, I use my portfolio as click-bait to draw people in to read my blog posts,” she said, “and I seek ways to create art with my own body that demonstrates the pain and isolation I endure.”

Hill has an impressive resume as an advocate today, but her efforts began with the simple desire for some control.

“A few weeks after being diagnosed with Ankylosing Spondylitis, I proclaimed to the Spondylitis Association of America that I would become a poster child for AS,” she explained. “I couldn’t put it into words then, but it was a desire to have some control over what I was experiencing, and for me that meant being out and loud about this horrible, unfair thing that was happening to me. I was used to using my voice to help other people, but not myself, and it took some time to adjust to talking about myself.”

Soon, however, she realized the importance of sharing her own experience:

“I will never forget the advice I was given when I asked what I should say: ‘You just have to tell your story, that’s why we asked you to testify. No one else can share what you’ve been through. No one else can tell your story for you.’ That has stuck with me and I give a similar answer to others now when they ask how to be an advocate.”

“Advocacy to me is empowering,” Hill added. “I know that by finding the right words to share my story I have the potential to impact change in big ways. On my tired days I think about all my sisters and brothers living with invisible, chronic diseases who are unable to share their own stories for whatever reason. The tangible memories that keep me going are the notes, comments, and messages from people who read my blog posts or hear me speak who share their own struggles with me. I appreciate being trusted with these painful, vulnerable, raw stories and I love that my sharing gives people permission to share pieces of their own journey. I like to think they feel less alone and more confident in their own experience, enough to begin their own journeys in advocacy.”

“Advocacy to me is empowering. I know that by finding the right words to share my story I have the potential to impact change in big ways.” — Charis Hill

Hill has even continued her advocacy despite a recent family crisis – and challenges in health insurance coverage on top of that.

Hill had health insurance through Blue Shield of California until mid-2016, when she was switched over to Medi-Cal, the state’s version of Medicaid. Due to her complicated health situation, she was able to get a waiver so she could continue seeing her rheumatologist, primary care physician and gynecologist.

However, she then found out that the charitable financial assistance she relied on for some care would no longer be available because of the Medicaid program, threatening her ability to keep seeing her psychiatrist. On top of that, she found that Medi-Cal was refusing to cover Remicade infusions she needs to slow progression of her disease.

The lack of continuity in care is a major problem for anyone, especially someone with a chronic condition, or multiple chronic conditions that are complex and challenging to treat. Patients must also have access to the appropriate treatment prescribed by doctors – in Hill’s case, Remicade infusions.

She wants to call attention to issues like this until there are local, state and national solutions ensuring patients have access to the health care they need.

“I intend to call attention to this issue until stakeholders are able to work together to adequately address these and other barriers to care,” Hill wrote in a letter she recently sent to the Department of Health and Human Services. “Let us continue to make strides to improve access to and continuity of care through Medi-Cal for all who need it.”

To follow Charis Hill, check out her blog at https://beingcharis.com.