Perspectives on Advocacy from a Patient & GC Student

 

Advocacy experiences are always highlighted as a key area of exposure for prospective genetic counseling students, allowing for familiarity with the unique lived experiences with those with disabilities and genetic conditions. As a person with a rare bleeding disorder, finding my own sense of advocacy was something that was grown and cultivated within me throughout different stages of my life. My sense of advocacy started as largely personal, revolving around self-assurance in management of my bleeding disorder. Key figures such as my hemophilia treatment center care team, my family, and my local bleeding disorders community stressed the importance of making my unique health care needs known to others.

As I entered my college years, my advocacy evolved beyond a strictly personal sense and evolved into a desire to advocate for the greater bleeding disorder and rare disease communities.  Whether participating in legislative advocacy against restrictive insurance policies for those with bleeding disorders or working to provide a summer camp experience for children with serious medical conditions, I was able to broaden my horizons beyond my own experience with rare disease. In my interactions with organizations in the larger rare disease community, I also came to understand how healthcare professionals, staff members, and volunteers from different backgrounds coalesce to provide essential community support.

Upon entering Pitt’s genetic counseling program, I was curious to discover how my understanding of advocacy as a rare disease patient would blend with the manner in which genetic counselors advocate for their patients on a daily basis. With a semester of genetic counseling school under my belt, I have learned key lessons in how genetic counselors act as advocates for the patients they serve and empower patients to become their own advocates.

1. Stay informed on policy and research initiatives that inform patient care

With a curriculum rooted in public health, Pitt’s program emphasizes the crucial role that healthcare policy and law play in providing care to patients. Lectures that we received were always peppered with information on pertinent health policy. Our lecture on informed consent taught us about laws that protect patients from discrimination relating to genetic testing and disabilities while our lecture on newborn screening introduced us to state policies that designate inclusion of certain genetic conditions on testing panels. Genetic counselors may find themselves advocating for a new disease to be added to the newborn screening panel in their state or helping to coordinate patient enrollment into clinical trials for a promising new drug. Through an understanding of the unique issues that a specific patient population finds most pertinent to their community, genetic counselors can better understand how to support their patients. 

2. Become familiar with local support groups

Throughout the first semester in our Principles of Genetic Counseling course, we were privileged to hear from families in the greater Pittsburgh area about their patient and caregiver journeys. A consistent highlight of these talks were the importance of local support groups as a source of encouragement, guidance, and direction for patient families. A genetic counselor may provide initial support in the clinic, but they compose just one piece of the puzzle in a network of support for patients with genetic conditions. As a part of our Interventions Skills in Genetic Counseling course, second semester students further explore this impact through direct observation of a support group. By opening avenues to other resources for support beyond the genetic counseling clinic, patients and their families can expand their journey of involvement and advocacy to the level in which they choose. 

3. Recognize that advocacy comes in all shapes and sizes

     After a patient shared that her ultimate goal was to find a diagnosis for the symptoms she was experiencing, the genetic counselor I was observing took the time to acknowledge her advocacy journey in taking the steps to seek out genetic counseling for her own personal clarity and health needs. This reinforced that advocacy is not defined based on set parameters of knowledge, past experience, or public-facing exposure. Patients can choose to participate in advocacy efforts to the level in which suits them best. It is important for genetic counselors to validate any and all experiences and meet individual patients where they are at in regard to how advocacy can function for them. 

If you have ever stood up for something you have believed in or have stood up for others in your life in any capacity, you have practiced advocacy skills in your daily life. Regardless of personal background or experience, advocacy is something that is instilled in each and every genetic counselor. As I continue on throughout Pitt’s genetic counseling program, I am grateful to be surrounded by fellow students and faculty who possess a shared passion for serving a community that is near and dear to my heart.