My mother was a cancer patient in Puerto Rico. Between 2011 and 2016, she relapsed three times until her doctors said there was nothing else they could do. Experiencing her deterioration and my desperation in trying to find treatments for her left a lasting impression on me. I kept thinking that she would still be alive today if I had been able to get her better medical care.
I was aware that better medical care existed, but we couldn't afford it. I received training in cancer research at UT-MD Anderson Cancer Center, a top cancer hospital, and I believe it would have made a difference if she had been treated there. However, the best we could do was to get a doctor in Puerto Rico who was affiliated with that hospital in Houston, TX. Even changing doctors was an uphill battle. I had to ask the Patient Advocacy office to intervene because her doctor didn't want to share her medical file.
Her new doctor tried to match her with clinical trials but ended up giving her a 20-year-old treatment that could only extend her life for about nine months. I believe he was limited by the type of tumor genetic testing ordered by her previous doctor. At that time, I was also aware that better tumor profiling existed, and they were even designed to automatically match patients with clinical trials. However, that type of test wasn't covered by her insurance, which resulted in limited treatment options.
As expected, the last treatment extended her life for close to nine months. After the shock of losing my mother, I kept asking myself what I could have done differently to save her life. That reflection led me to think about what I could still do to save other people's lives. This inspired me to create Patient Support Network (PSN), a fundraising platform for advanced medicine. With this project, I'm targeting the inequalities and inequities in access to advanced medicine. My approach ranges from funding patients who travel to receive advanced medical treatments to funding systemic changes in regions that lack advanced medicine. This requires collaboration among individuals, private companies, nonprofits, and governments. If you are interested in more information about joining the network, please contact us.
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