Andrea and Jonathan Williams

Why I Participate: Andrea M. Williams

[Read Story] Andrea Williams, who founded and leads the Children’s Sickle Cell Foundation in Pittsburgh, PA, is a parent representative and site lead in NICHQ's Working to Improve Sickle Cell Healthcare (WISCH) project.

The Power of a Phone Call: Following Up on Sickle Cell Disease

[Read Story] When a mother received a letter from the Illinois Department of Public Health stating that her newborn tested positive for a blood abnormality, she complied with the request to schedule a follow-up blood test with her provider. At the follow-up appointment, the hospital reported to her that her child did not test positive for sickle cell disease.

Andrea Williams

When the ER Can’t Hear You: Tips and Transition Tools for Families with Sickle Cell Disease

[Read Story] Andrea Williams had no idea that she and her husband were both carriers for sickle cell trait until their fourth child, Jonathan, was born with the disease in 2000. When two people with the trait have children, each child has a 25 percent chance of having sickle cell disease and a 50 percent chance of carrying sickle cell trait.

Overcoming Confusion and Misinformation About a Life-Saving Drug

[Read Story] For the past seven years, Patricia Kavanagh, MD, who specializes in pediatric care at Boston Medical Center, participated in a camp that catered to children with sickle cell disease and other serious diseases. Initially, children with the genetic blood disorder were physically smaller and had less energy; Kavanagh constantly mistook children for being several years younger than they were.

Brother Advocates for Change in Sickle Cell Disease Care

[Read Story] When Dennis McCullum was a baby, his brother passed away at age 3 from complications of sickle cell disease. McCullum also suffers from the genetic disorder, which causes blood cells to change shape (“sickle”) under stress, temperature changes or other conditions. These altered blood cells get caught in blood vessels and can cause intense pain “crises,” frequently leading to tissue damage or organ failure.

Administrator smiling with staff in healthcare staff in the background

Leadership Engagement is Critical to the Success of Improvement Efforts

[Read Story] There’s no easy way around it: change is hard, and resistance to change comes in many forms. Oftentimes, proposed changes aren’t viewed as doable or as a priority. Regardless of the type of opposition, teams working on everything from breastfeeding support to sickle cell disease are finding ways to ensure leadership commitment to help overcome organizational resistance.

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Leaving the Pediatric Cocoon

[Read Story] Transitioning from pediatric to adult care for patients with sickle cell disease is a matter of life and death—literally. With data showing there is an increase in mortality during the time individuals with sickle cell disease transition into the adult world, teams on NICHQ’s WISCH program are working together to address various aspects of sickle cell healthcare, in particular care transition and patient advocacy.

Patient ‘Navigators’ Help Manage Care and Overcome Social Obstacles for Patients with Sickle Cell Disease

[Read Story] Managing a disease or complex health need can entail countless hours of effort: scheduling appointments, keeping track of treatment, and dealing with paperwork and insurance. It’s a burden for anyone, but struggling with unemployment, housing or other social issues makes it hard to prioritize health. Patient navigator programs, begun mainly for cancer patients, train “navigators” to provide assistance.

Technology Improves Sickle Cell Disease Care Beyond the Clinic

[Read Story] Sticking to a daily medication regime can help SCD patients manage their disease, but sometimes it’s hard for patients to remember to take medication, particularly if they are transitioning to adulthood and not used to managing their own care. The WISCH team in California is working with a technology that monitors when pills are removed from a prescription bottle.

Q&A with Dr. Kwaku Ohene-Frempong: The Importance of Sickle Cell Screening and Disparities between the US and Abroad

[Read Story] Kwaku Ohene-Frempong, a pediatric hematologist at Children’s Hospital of Philadelphia, has been working to improve the care of people with SCD, both in the United States and abroad. Ohene-Frempong talks about the progress and remaining gaps in screening, and shares his global perspective on the disease.

Texting to Help Families with Sickle Cell Disease

[Read Story] Catherine Hoyt, a member of the WISCH Missouri quality improvement team, makes home visits to children with sickle cell disease. But, when many families weren't keeping their appointments, Hoyt responded to parent feedback and started texting them to remind them of visits. Now, she texts or calls the day before a visit and only goes to the house if she receives a confirmation. The appointment completion rate is now at 75 percent.

Q&A with Lynnie Reid

[Read Story] As the parent of two children with sickle cell disease, Lynnie Reid has spent decades dealing with medical systems. She has struggled with gaps and inconsistencies in care, particularly dangerous for those with the genetic blood disorder. As Reid encountered challenge after challenge while trying to secure care for her children, she became an impassioned advocate for bettering health systems.

Treating Pain More Quickly for Children with Sickle Cell Disease at Boston Medical Center

[Read Story] Healthcare providers at the Boston Medical Center (BMC) have slashed in half the time it takes to deliver pain medications to sickle cell patients seeking help in the pediatric emergency department (ED), and they did it in just over a year. Now other professionals across the country are looking to them to address this common problem for people living with sickle cell disease.

New Tennessee Center Offers Affordable Care to Sickle Cell Patients

[Read Story] When Dr. Michelle Williams first started practicing pediatrics in Nashville, TN, she noticed that many patients with sickle cell disease stopped receiving primary care treatment once they transitioned to adult care. Patients with the disease can lead functional lives with consistent medical treatment from primary care physicians and specialists. But without regular care, the genetic blood disorder can cause debilitating pain and lead to early death.