Patient Advocacy Story Board
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Mommy says that I'm really sick and need new jeans.
You're pretty close Timmy, but she's not talking about blue jeans. You have acute lymphoblastic leukemia and you need something called gene therapy. Right now, we're trying to figure out how to get you that therapy.
Timmy, and many other children like him, suffer from devastating genetic diseases. Unfortunately, some of the most effective therapies are inaccessible to many due to their location and costs. One of the roles of a nurse as a patient advocate is to fight for the patient and others in their community to ensure they have access to these treatments.
Sadly, Timmy succumbed to his illness, after never receiving the gene therapy he needed. But, that does not mean that I stop advocating for his family and all the other children like him who are suffering.
Today, I am testifying in front of a joint committee in congress, along with several pharmaceutical and insurance companies, exploring means of attaining treatment for children, families and communities with limited resources. This is just one of my roles as a patient advocate.
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