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Innovations in Sickle Cell Healthcare Can Improve Care for Everyone

Kate Vaughan

Kate Vaughan

A Message from Kate Vaughan, MSW
Associate Project Director and WISCH Project Leader

September 2013

September is my favorite month. As a true New Englander, I love it when the weather starts to get crisper, the fall fruits come into season, the leaves start changing color, and all the back to school activities commence after Labor Day. In the past two years (since I started working at NICHQ), I have come to appreciate September for another very important reason: September is Sickle Cell Awareness Month.

At an individual level, I care deeply about sickle cell awareness because it is important that everyone has access to coordinated, compassionate, patient and family centered and culturally effective healthcare.  From a systems level, I also know that we can learn a lot from the ways in which people with complex health issues, such as sickle cell disease, interact with the healthcare system. People with sickle cell disease can spend long periods of time in the hospital and in emergency room care. Uncovering the secrets to improving care for this population can teach us a lot about how to simplify and improve care for everyone.

Sickle cell disease (SCD) is the genetic disorder most commonly found in routine newborn screenings conducted on all US-born babies. It affects upwards of 100,000 people in the United States alone – predominantly those of African ancestry, though sickle cell disease is increasingly found in Latino and other populations as well. It is estimated that more than two million Americans are also carriers of the sickle cell trait. Since it’s a genetic disease, one can inherit the trait and not know it. Unfortunately, because of a lack of widespread information and standardized processes to follow up on newborn screening, many parents-to-be only discover of their own status after their child tests positive for the disease.

Illustration of normal red blood cells
​and Sickle cells. [Source]

Just one generation ago, sickle cell disease was considered a fatal disease of childhood. This chronic condition is characterized by episodes of extreme pain, brought on by things such as changes in temperature, stress, or infections, which cause red blood cells to become misshapen, or “sickled.” Once they’ve sickled, these cells can block blood vessels and cause extreme pain or even organ damage. Not long ago, the highest rate of mortality for people with sickle cell disease occurred in the first three years of life. Now, thanks to advances in treatment, care and patient education, many live into late adulthood.

While we should celebrate this great progress, there is still much to do.

As the project leader for NICHQ’s WISCH (Working to Improve Sickle Cell Healthcare) project , I am proud to be working with fifteen grantee sites across the nation to improve care for those living with sickle cell disease. This multi-year effort challenges multi-disciplinary teams (made of hospitals, Federally Qualified Health Centers, sickle-cell focused community-based organizations and consumer representatives) to address some of the most critical issues facing those accessing sickle cell care. And we’re seeing advancements that bring me even more optimism.

For example, it is widely known that the transition from pediatric to adult care can be a time when young adults are at great risk for “falling through the cracks.” For young adults with a chronic disease, this time can be especially risky. Many see their conditions worsen or even die during this period because of the lack of continuity of care. A group of teams, led by partners in Memphis, Tennessee, have built on nationally-recognized curriculum for transitions of care and created a comprehensive sickle cell-specific curriculum to help medical professionals address the necessary components of transition. 

We also know that patients and families who understand sickle cell disease and how to manage it at home often become the most effective advocates for their health, resulting in better care and better health outcomes. A group of teams, led by partners in Peoria and Chicago, Illinois, are working to define the best self-management strategies for sickle cell patients. Many are using nationally recognized curricula for the management of chronic disease to give patients the tools necessary to manage and advocate for care.

In addition to this, many teams, such as partners in Newark, New Jersey, are working to increase knowledge and usage of the drug, hydroxyurea, in certain sickle cell patients. When hydroxyurea is used appropriately, it can significantly reduce the frequency of pain episodes and other complications, dramatically increasing one’s quality of life and decreasing the need to acutely access the healthcare system.

Finally, treatment and care in the emergency department is a reality for all people with sickle cell disease. When extreme pain episodes occur and the pain exceeds what can be managed at home, most patients seek help in the emergency department. Because optimal sickle cell care is not widely understood and there is no standard way to gauge pain levels, patients often report that they have less-than-optimal experiences in this part of the healthcare system. Issues range from extraordinarily long time between arrival and administration of pain medication to lack of knowledge of SCD by emergency room professionals to issues of blatant discrimination.

A group of teams, led by partners in Boston, Massachusetts, and Cincinnati, Ohio, are working to improve the care processes in their emergency departments. By partnering across departments and increasing general knowledge about sickle cell, these teams have significantly reduced the time between arrival and the first administration of pain medication – a remarkable achievement that can result in fewer hospitalizations and lower costs of care overall.

Each of these issues – transitions in care, patient education, use of pharmaceuticals, emergency care – transcends care conditions. Improvements in the treatment of sickle cell disease can apply to all patients with chronic conditions.

As someone who has spent many years working to advance healthcare, it is exciting to see the WISCH improvement teams from across the country sharing strategies and learning from each other. We are stronger when we work together, share our successes (and failures!), and coordinate efforts. 

While most of us reading this message probably do not have sickle cell disease, we will all use the healthcare system at various times in our lives and should be invested in making this system the best it can be for everyone. I, for one, will be spending some quality time with my healthcare providers in about a month, as I deliver my second child. The results I see from the brilliant and creative partners working on the two demonstration programs that comprise WISCH give me great faith in our medical system. The innovative – and sometimes deceptively simple – solutions they are discovering stand to help all of us as we seek care in the future.


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