Voices Across America

My Patient Story

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Rose

State: Texas
Congressional District: TX21

Diseases

Cancer, Immune Disease, Rare Disease

Issues and Challenges

Rose has encountered: Access to Expert Providers, Access to Medicine, Rare / Underserved Disease, Discrimination (nonmedical), Medical Discrimination, Transparency in Health Care, Underserved Community

My Story

When I was 19 years old my father passed away with a rare form of cancer. It was a life-altering event for me. I was 19 years old, in graduate school and soon I felt as if my life fell apart; but in all honesty, it was a slap of reality.

My father lived in a small town in Texas where Oncologists thought they knew how to treat cancer. He was receiving treatment for cancer even though the Oncologists were unable to identify the type of cancer, nor were they able to stage it. Week after week he was treated with chemotherapy; basically just pumping any type of chemo, hoping one of the drugs would show a response to his condition. At such a young age I knew they were mistreating him. I insisted they transfer my father to the nearest academia center – MD Anderson Cancer Center, but they kept saying he was better off where he was at and there was no way he would be able to be seen at MDACC. Instead they allowed my father to deteriorate. It wasn’t until an unfortunate/fortunate situation occurred that things turned around.

An old family friend, who happened to be the Lt. Governor of Texas at that time, was able to make a few calls to have him transferred immediately to MDACC. The situation was fortunate because he was able to pull strings to get him in; however the unfortunate part of it was that if not for his intervention, my father would have never made it through the doors of MD Anderson.

The Oncologist at MDACC was able to identify the type of cancer, but due to his cancer being ‘rare’ and being treated incorrectly for so long, there was very little they could do. From the time of diagnosis to the time of death was a year. He lost his battle.

Words cannot truly express what we experienced during that time. I was on a path to become a pediatrician; which all changed. I took a detour and became a scientist in Cancer biology/Genetics. I’ve been working in Cancer research, pre-clinical to first in human trials for the past 20 years, focusing on rare cancers, with one of my first jobs being at MD Anderson Cancer Center, then moved on to biotech. Through years of research, I’ve also had the opportunity to work on other rare types of diseases including Idiopathic pulmonary fibrosis and scleroderma from which my mother and sister passed away.

Advocacy fell into my lap
I’ve been helping others before the term ‘advocacy’ was a thing. Friends, friends of other friends, strangers by word of mouth would reach out asking for my assistance. They’d ask: "What’s the best way to navigate through the system to get treated by some of the best physicians?" "How do I get my physician to listen?"

It’s difficult to navigate through red tape when you are a patient of rare disease but that feels 10-fold when you are person of color. My main focus area of advocacy is rare disease but specific patient groups at-risk for poor health outcomes based on certain demographic and cultural factors (health disparities): African-Americans, Latinos, older adults, women, low SES (socioeconomic status). I’ve realized, the death of a father, mother and sister who were misdiagnosed, ignored due to the pronunciation of their last name, color of their skin, race, and ethnicity made their battle with their disease much worse. What once was a curiosity of trying to figure out the ins and outs of cancer eventually became my motivation for advocacy to help others.

My Motivation and Inspiration

- To increase awareness about rare disease
- To engage in educational sessions for POC to explain the risks of rare disease and other chronic illness; and the need
for them to speak up, ask questions and never accept mediocre.
- Provide educational handouts/resources to individuals who typically do not know how to navigate through the
internet.
- To provide an opportunity for Q+A with 1:1 conversations.
- To be a resource, letting people know they are not alone.

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