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Living with a Marked Number

Join us at the 11th Annual Sickle Cell Disease Educational Seminar in San Diego, California on September 6, 2019. Learn about the symptoms, complications, and challenges faced by SCD patients. Discover a comprehensive team approach to managing the disease and improving quality of life. Hear inspiring stories of individuals who have defied the odds and lived life to the fullest. Don't be a target, live as if your life depends on it!

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Living with a Marked Number

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  1. Living with a Marked Number 6 September 2019 11th Annual Sickle Cell Disease Educational Seminar San Diego, California Defying the Odds

  2. Disclosure Statement I do not have a relevant financial relationship with any commercial interests in relation to this program/presentation. I do not anticipate discussing the unapproved/investigative use of a commercial product/device during this activity or presentation.

  3. Symptoms and Complications • Pain – acute and chronic • Life-threatening events • Infection • Stroke • Acute chest syndrome • Chronic organ damage • Premature death • Average life expectancy of SCD patients 40-50 years

  4. Paulukonis ST, Eckman JR, Snyder AB, Hagar W, Feuchtbaum LB, Zhou M, Grant AM, Hulihan MM. Defining Sickle Cell Disease Mortality Using a Population-Based Surveillance System, 2004 through 2008. Public Health Rep. 2016 Mar-Apr;131(2):367-75. PubMed PMID: 26957672; PubMed Central PMCID: PMC4765986

  5. Access to care for SCD patients is challenging, particularly for adults • Many adult hematologists are not well-trained or comfortable caring for SCD patients • Primary care providers are needed for adult SCD safety net • Transition period (teensyoung adults) particularly troublesome • Many adult SCD patients default to using Emergency Departments for primary care • Poor continuity and coordination of care with high re-admission rates • 50-60% SCD patients are Medicaid-eligible; 20% are dual-eligible (covered by both Medicaid and Medicare) • Low Medicaid reimbursement rates further discourage providers specializing in SCD

  6. Defying the odds – Comprehensive Team Approach • Regular visits with primary care doctor • Regular visits with SCD provider/hematologist • Visits with other specialists, as needed • You are the coach of this team—Do your part; lead and be • pro-active! • How is your quality of life? What does quality of life mean to you? • Be open to new therapies and new treatments • Maintain a positive attitude and be your own motivator • Ask your employer to make accommodations for your disease

  7. How do you afford retirement? • Many SCD patients may not get Social Security benefits if disease prevented them from working full-time • Leisure time often neglected by SCD patients, detrimental to health • Age bias • Older SCD patients not often featured in prevention messages and not eligible to participate in clinical trials • Live life to the fullest and refuse to be a victim • Everyone has something, I just happen to have SCD

  8. Don’t be a target, live as if your life depends on it! J. HoXi Jones Proseandtea@att.net

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