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Healthathon Challenges

How could sustainable treatment be improved?

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I'm not against a transplant, but at the end of the day, it may not work for everyone. I have friends that it did not work for. So, I just want to be at a hospital and have doctors that care about me and my feelings and are not just trying to push treatments and everything on me if that’s not what I want to do.” -Patient


You have all these specialties and all these specialists and everything for cancer or they want to do this for HIV, but why not sickle cell. Why is there so much discrimination or stigma tied to sickle cell disease? One of the first blood diseases, why?” -Patient


Here they really don't know what to do. So I'd be there and they have to figure out what to do and then they get you medicines that don’t work and admit me to the hospital and then when I'm in the hospital they don’t know how to treat me when I'm in the hospital, so it’s basically real different down here. So that’s why I feel that I really need a hematologist down here.” -Patient


Identifying pathways to care and sustainable treatment is perhaps the biggest challenge facing SCD patients and those who provide their care. Barriers include lack of treatment options, particularly for adults; lack of education and access to information for patients and providers; lack of awareness of clinical research opportunities; lack of specialists in SCD who can develop individualized care plans with patients; no incentives to providers for care coordination and patient education needed to achieve treatment development and compliance; drug-seeking stigma and racial bias in healthcare, which causes mutual distrust in the patient-provider relationship; financial coverage of treatments; lack of social support for vulnerable patients.

Challenges

  • How might we reduce racial and drug-seeking bias in healthcare?
  • How might we increase access to a wider range of treatment options for patients everywhere?
  • How might we increase SCD knowledge in healthcare?
  • How might we make patients and providers aware of and receptive to new treatment options and clinical research opportunities?
  • How might we facilitate financial access to treatments?

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  1. Paul Kuhne
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  2. Alex Wilson
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Boosting Patient Input and Involvement in Clinical Trials

As one Roundtable participant noted, “even while patients have a seat at the table, they do not often have access to the grocery store.” SCD patients are often poorly represented in clinical trials and as a result, struggle to understand the key results from emerging research or express concerns to researchers evaluating new treatments.  One potential solution would be to develop better industry, academic, and patient advocacy partnerships to ensure that patients have a seat at the table...

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