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ASH 2021: The Importance of Self Advocacy
Posted: Feb 03, 2022
ASH 2021: The Importance of Self Advocacy image

Self advocacy in acute myeloid leukemia is essential. Each individual's presentation, type, and progression of AML is unique. AML doesn't exist alone, but is coupled with other health conditions, overall wellness, socioeconomic, mental and emotional health. These individual and complex needs require personalized treatment and care. Add to that the increasing options for AML treatment and it can leave your head spinning. The ability to gather, assimilate and understand all of the information related to your AML and advocate for what you feel is right for you individually is essential for your best care, and can also feel like a full time job.

Luckily, the development and support of self advocacy is coming to the forefront in healthcare with improved recognition by providers. This conversation garnered attention this year at the American Society of Hematology (ASH) meeting. 

The Wellness Studio at ASH not only shares information and tips on self care, but also showcases art created from responses of researchers and physicians to specific questions. Different questions are asked each year. This year one of the questions posed was, "How have you worked with patients to increase their self advocacy skills?"  

Physicians and researchers in attendance at the meeting responded to these questions and their responses were expressed in a mural created by local artists.  

Healthcare providers and scientists are encouraging their patients to advocate for themselves by: 

  • Developing individual care coordination plans (that can be shared with providers at any health care system)
  • Working with institutional and patient support groups
  • Sharing community benefits programs
  • Sharing financial assistance and grant programs
  • Increasing access to healthcare
  • Increasing access to education
  • Recognizing the patient as a part of the healthcare team
  • Recognizing that patients must participate in their own care

Self advocacy does not always come naturally, especially when many believe "Dr. knows best". Educating yourself about AML, available treatment options, side effects, and even obtaining a second opinion allow for informed decision making. Becoming informed and asking questions does not mean you are questioning a provider's knowledge or intelligence, but leads to greater understanding. Learning how to advocate for yourself takes practice and work. The HealthTree Foundation offers many tools and resources to help you in this effort:

1) Connect with others with AML who can share education, resources and their personal example of self advocacy. You can do so by joining our Adult AML, AML Caregivers and Childhood AML Facebook groups as well as by attending our chapter events.

2) Participate in world class AML education in HealthTree University. Knowledge is indeed power. 

3) Use tools like our Clinical Trial Fiinder, our AML Specialists Directory and Side Effect Solutions to find and join relevant clinical trials you can participate in, find top AML specialists near you and learn how to manage AML treatment side effects. These tools allow you to have informed discussions with your provider and healthcare team as you work to decide what treatment is right for you at the right time. 

It's exciting to see healthcare providers recognize the value of educated, empowered patients. As you enter a new year with AML commit to learn, surround yourself with support, use available tools, and speak up!   

The author Kerith Amen

about the author
Kerith Amen

Kerith joined HealthTree Foundation as a Community Co-Director for AML in 2022. She is a mother to a spirited eight-year-old daughter, Adair, and their beloved rescue, Violet. She lost her best friend and husband, Rob, to AML in March 2018. Kerith wishes she had a resource such as HealthTree for AML during Rob’s illness. She is a strong supporter of HealthTree's mission. She hopes that by sharing her experience, she may help other patients and caregivers navigate an AML diagnosis.

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