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Advocating in Your Pajamas

Being a patient advocate comes in many forms, and not all of them require you to get out of bed to storm the halls of Washington.
PUBLISHED November 14, 2018
Sarah DeBord was diagnosed with metastatic colon cancer at age 34. In the years since, she has turned her diagnosis into a calling, and become an advocate for other young adults diagnosed with colorectal cancer and parents with young families facing cancer. She works as a communications and program manager for the Minneapolis-based Colon Cancer Coalition , volunteers her time with the online patient-led support community COLONTOWN , and blogs about her often adventurous experiences of living with chronic cancer at ColonCancerChick.com.

Perhaps you've heard of a patient advocate but weren’t sure what exactly it was and if you could ever become one. An image of someone storming the Capitol steps may come to mind, and that alone may make you crawl back under the covers and think it's not for you. But what if I told you being an advocate is something you could do without even getting out of bed?

Patient advocacy covers a broad range in the health care world, and as a patient advocate you can focus on as little or as much of it as you want. You can be a patient that advocates for other patients, you can be a caregiver that advocates for just your patient or you can be a care provider that wants to speak up and help represent the voices that are so often silenced by this disease.

Advocating with the Legislature

Our lawmakers play a vital role in the progress we make in cancer research, protecting patient rights, and ensuring coverage of medical conditions.

Advocating at the legislative level is not about being partisan, because as we know cancer is a non-partisan issue. It is about using your voice as a constituent to let your elected officials know what is important to you as someone impacted by cancer. Hot topics like health care coverage and funding research are always at the top of the list.

I've gone to the Capitol on a few occasions to advocate for the closing of the Colorectal Cancer Loophole. A simple change in the medical billing code for screening colonoscopies would ensure that Medicare patients are completely covered for this preventive screening, and not getting billed should any polyps be removed during the procedure.

Some more recent cancer advocacy includes work on the Palliative Care and Hospice Education Training Act, which funds training and education for more providers in palliative and hospice care. Adolescent and young adult cancer advocates have worked to have student loans deferred while a patient is in active treatment. The Lymphedema Treatment Act aims to make Medicare and other insurance providers cover compression garments necessary to control the condition.

Before you crawl deeper under you covers, know that you don't have to go to Washington, D.C. to advocate. There are local, state and national organizations that work on issues that impact cancer patients and their families. These organizations, such as the American Cancer Society - Cancer Action Network, keep everyone abreast of ways to make their voice count simply by making a phone call, posting to social media, writing a letter to an editor, or voting.

Advocating for Patients

In your own cancer community, you can help other patients seek out second opinions, understand the standards of care for their cancer and help them navigate the world of clinical trials. I felt lost during my first few months after diagnosis, and I work now to help others who are walking the same path. I want every patient to feel empowered to make decisions they trust about their care. I want patients to maximize services available, and understand palliative care and how to ensure they are receiving it. I want families to understand hospice care and when it's best to transition. And I want to help connect patients with support both in their community and online that can fill gaps in care that often go overlooked when their focus is solely on staying alive.

Advocating for Yourself

There is no more important place to advocate than for your own care, and you can start by understanding your disease and treatment options. It's important to educate yourself about side effects and long-term repercussions from cancer so you can seek out the best to maximize quality of life. It means understanding what multidisciplinary care can be utilized to get the best possible outcome. And it means standing up for yourself. Patients need to remember that they are the client, and they can always take their business elsewhere.

Though we can't control our disease, we can control the impact it has on our lives and the lives of others. There isn't a person I know who hasn't been touched by cancer within a degree or two of their immediate circle, so we all have a vested interested in making it better for everyone else.

Fellow stage 4 colon cancer survivor and Fight Colorectal Cancer Ambassador Heather Schiller says, advocating with Fight CRC has given her "another way to fight." And it's what I believe motivates every patient advocate. Too often, this disease doesn't respond to the tangible fight we throw at it, but we can still fight against it by making it better for others who receive a diagnosis. Whether you march down the halls of Congress or help another patient as you type on your laptop wearing pajamas in bed, being an advocate creates change for the better of the patient with a disease already leaving too many on the battlefield.

 

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