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At Pathways To Trust, your gift becomes a rare disease patient's voice

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Pathways To Trust believes that there should not be a dress code for patients in pain to receive treatment.

That may seem obvious, but every single Sickle Cell patient can tell you that he or she needs to “dress for success” if he wants to succeed in getting treated for a Sickle Cell Crisis. There are approximately 100,000 SCD patients in the US who face significant hurdles to accessing care including providers who have little knowledge of the disease and how it affects people and significant racial bias.

Imagine a 26-year-old male Sickle Cell Disease patient. This young man has been living with pain crises since he was a small child, and finds himself in the Emergency Room about 5 times per year.  He loves football, and tried to play on a Pop Warner team, but his pain forced him to quit. Growing up, he missed out on parties, field trips, and family occasions, but because of the stigma of his disease, he never shared with his relatives or friends what was going on. Despite his challenges, this young man pushes himself beyond his limits to get through college, and upon getting his degree, lands a professional position.

Yet this young man has difficulty getting care for his crises. Each trip to the Emergency Room is a stressful experience. The healthcare providers are unfamiliar with what tests to run to give him an accurate diagnosis, how to treat a life-threatening pain crisis. As an African-American, he faces suspicion when he asks for medicine to help him with his pain. While he is in agony, he must get dressed in his business attire to go to the hospital so the staff will see him as a patient rather than what they suspect he is: an addict looking for drugs.

You can help patients like this young man get the care they need with your donation to support the Pathways To Trust Time to Listen to Sickle Cell Disease initiative. Our Healthcare Provider educational programs, developed using the input of various healthcare stakeholders including patients, patient advocates, healthcare providers and health systems, will help participants
 

  • Recognize the historic racial bias present in the system and how it has affected their own perceptions of SCD patients

  • Identify the multi-organ comorbidities that characterize progressive SCD symptoms and health status of SCD patients as they present in your practice

  • Formulate an ongoing treatment plan to manage the health of SCD patients

 

Pathways To Trust believes that by helping healthcare providers truly understand not only the clinical aspects of and current treatment guidelines for SCD, but also the everyday life experiences of SCD disease patients, people like Anton can one day find treatment with respect.

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