In the days leading up to this month’s election, healthcare and access to healthcare is at the forefront of many people’s minds. We feel that it is important to remember that access to care involves much more for many people than what kind of insurance they have. For rare disease patients, especially those of color, the financially challenged, or those without much research support and a large community, so many obstacles can affect getting the care you need and deserve:
· Racial bias
· Insufficient knowledge of a disease
· Financial troubles affecting your ability to pay your share of medical bills
· Transportation issues
· Inability to get time off to see a healthcare provider
· Poor communication between patients and healthcare providers
· Poor communication among multiple healthcare providers treating you
· Distrust of the healthcare industry
· Low health literacy
· Low general literacy
· Being one of many siblings with parents who work several jobs
· Previous bad experiences with healthcare providers
· Having a condition so rare very few healthcare providers know how to diagnose/treat you
· Embarrassment over your condition
· Cultural expectations/religious beliefs blocking your ability to seek out care
The upshot is, good healthcare leading to positive outcomes is affected by myriad factors, and addressing these barriers is the responsibility of all of us. What can you do to make an impact on one or more of the challenges found on this list? Email us your thoughts at info@pathwaystotrust.org, and we will share them in an upcoming post!
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