Vital KC

Not everyone with Sickle Cell Disease sees themselves as a patient. Many of them prefer to be called Sickle Cell Warriors, since they overcome the daily struggle daily of intense pain, fatigue and organ damage.

Sickle Cell Disease is an inherited blood disorder, which changes the shape of red blood cells from round to sickle shaped, making it difficult for blood to flow. In the United States, all newborns are tested for the disease, which mainly impacts people of African descent, but can also affect people with ancestry from India, Italy, Greece, Turkey and Saudi Arabia. According to the National Institutes of Health (NIH), children as young as one can experience a major pain episode, known as a pain crisis.

University Health (UH) collaborates with its neighbor, Children’s Mercy, to ensure young patients transitioning out of Children’s Mercy's comprehensive sickle cell disease program into care at UH’s Sickle Cell Center.

Clinicians at Children’s Mercy provide care from birth through early adulthood. Sickle Cell Warrior Jemela Williams received compassionate treatment there, with her final appointment falling on her 21st birthday. “I was crying all the way out,” Williams recalled.

UH and Children’s Mercy work closely to ease any concerns patients like Jemela may have about transitioning to a new healthcare system.

As a child, Jemela received care for Sickle Cell Disease at Children’s Mercy. Today she volunteers her time to help other Sickle Cell Warriors.

“We understand that children with Sickle Cell, and their parents, have placed their trust in the Sickle Cell Clinic at Children’s Mercy for years. The transition is difficult for providers and staff too, who become like family to these young adults,” said Donna McCurry, APRN. “We want to empower the young people to become their own advocates as they move to adult care.”

In recognition of World Sickle Cell Day on June 19, child and adult providers hosted an informational meeting about reducing barriers to care. The top subject was the importance of keeping consistent health insurance coverage.

Here are some recommendations for anyone with Sickle Cell Disease who may change providers or hospitals:

• If you move often, make sure you use a consistent address – such as a relative’s or a PO Box – for hospitals, insurance companies and other organizations. This is especially important when it’s time to renew Medicaid coverage.
• Consider the financial counselors part of your care team. The Financial Counseling Center at University Health is a helpful resource.
• Get in the habit of bringing your insurance card and photo ID to all appointments.
• Learn if you are a carrier of Sickle Cell Disease. The providers at the UH Sickle Cell Clinic provide testing. To learn more about the comprehensive care at University Health’s Sickle Cell Center, call 816-404-4290.

University Health Financial Counselors are here to help you navigate the cost of care. To reach UH Financial Counseling, call 816-404-3000.