Glioblastoma patient advocate

In August 2023, my younger brother was admitted to the emergency room and diagnosed with an aggressive grade 4 brain cancer, called Glioblastoma. 

Learning that he had 14-16 months, I suddenly became a caregiver and supported my mom who is a non-native English speaker and living with low income. 

During my journey as his caregiver, there was overwhelming medical and financial information that our family had to process, adjust, and adapt to successfully help my brother in his care. This includes doing my time-consuming research to ask the doctors the right questions about the treatment options, being fastidious in potential medical treatments, asking for referrals for outpatient services, and following through with authorizations and referrals. 

Aside from navigating the medical system, we had to prepare ourselves for the new "normal" when my brother was discharged.  We transitioned into the home to include his medical equipment around the house, looking to state and county programs for financial support, transportation services for his daily treatment, and supportive services related to his daily care and hygiene. 

I’ve learned that I am not alone. A New York Times article estimated 53 million Americans are becoming caregivers spending +20hrs per week taking care of someone who has suddenly become ill.  They are the “backbone of long-term” care for patients who have to lose their jobs and take care of someone without financial support.

I have joined my sister's mission and non-profit, Patient Led Foundation, as a Patient Advocate for Glioblastoma, to provide resources and support for those who are in this journey with us. 

Her mission is inspired by being a patient, scientist, and entrepreneur who had to navigate the medical system for her diagnosed retinitis pigmentosa in 2010 with no standard of care.  Her challenges taught her the power of shared information and knowledge and self-advocating.  Patient Led Foundation is building a community of information and resources to support patients and their caregivers in navigating their care.

- Le Nguyen, Patient Advocate for Glioblastoma