Why Sickle Cell Awareness Month Is Important to Me
A Message from Charlie Homer, MD, MPH
NICHQ's President and CEO
This month, our nation is recognizing two conditions that affect children. It is National Childhood Obesity Awareness Month and it is also Sickle Cell Awareness Month. Because you have undoubtedly heard a lot about the former, I would like to draw attention to the latter, the less common and less known of these – sickle cell disease.
Building awareness of sickle cell disease (SCD) is a cause I take very personally because I believe the performance of our healthcare system is defined best by how we care for our most needy and vulnerable patients. And how we care for SCD patients leaves a lot to be desired.
SCD is the most common genetic disorder detected in the routine newborn screening exams done for every child. While rare compared to obesity, it affects nearly 100,000 Americans, largely among individuals of African ancestry, but increasingly Latino and other populations as well. Under certain conditions – such as dehydration, cold, stress, or infections – the red blood cells in affected individuals become misshapen and block small blood vessels. This causes episodes of extreme pain (which often require pain treatment in the emergency department) and injury to organs.
We have made tremendous progress in the care of people with SCD since my training thirty years ago. Back then, most individuals with sickle cell disease didn’t survive until adulthood. Now, median life expectancy for individuals with sickle cell disease extends to the fifth decade of life.
But while we have made tremendous progress, we have a long way to go. Rates of death for children with sickle cell disease vary fivefold across states, meaning that many children continue to die unnecessarily from this condition. The one medication that offers specific treatment for this condition, hydroxyurea, is vastly underused. Few adult specialists treat individuals with SCD. Most adult primary care doctors see too few individuals with the condition to develop or maintain expertise.
We don’t have a system that tracks the care and outcomes for all of these individuals. Such a system would allow us to truly assess whether they are getting the care they need and achieving the outcomes they should. It would also enable us to learn from the care of each person with sickle cell disease and improve outcomes beyond where they are today.
When you ask adults with SCD about their care, their near universal response is to passionately decry the care they receive in the emergency department (ED). Some of that is no doubt the common ED experience for many patients – e.g., long waits and competing demands for the attention of the overworked staff.
But what I hear is deeper than that. What I hear is the experience of indignity, of lack of respect, of lack of trust. These patients are asking for strong medication for pain that cannot be objectively measured by a blood test or a blood pressure cuff. And so, even if they have a regular doctor in the community, even if they have had multiple visits to the same institution, they are treated with distrust.
We at NICHQ are working with teams across the country to improve care, experience and outcomes for people living with SCD. Through the WISCH (Working to Improve Sickle Cell Healthcare) program, an initiative supported by the Health Resources and Services Administration (HRSA) and led by NICHQ and its partners, fifteen teams from around the country are focusing on assuring the reliable delivery of evidence based treatment, strengthening the coordination of care both among healthcare professionals and with community agencies, preparing for transitions within the healthcare system, accelerating and improving care in the emergency department, and standardizing communication with parents of children who are diagnosed with SCD or sickle cell trait during newborn screenings. By learning from variations, this multi-year effort stands to produce powerful solutions for the treatment of this complex disease.
We are already seeing substantial results from this work. For example, teams such as those from Massachusetts, Pennsylvania, Ohio and Tennessee are reducing the time that patients wait before receiving pain medication in the ED.
The changes we are making to fix the healthcare system so that individuals with SCD get superb care will benefit everybody. We all need a healthcare system that seamlessly links public health systems (such as newborn screening) with healthcare delivery. We all need a healthcare system that provides compassionate and technically expert care. We all need a healthcare system where doctors provide exceptional care for everyone in need, not only for those whose conditions are well reimbursed.
When individuals with sickle cell disease get such care, they live longer, are more productive, experience fewer hospitalizations and incur lower healthcare costs. The same systems and approaches improve outcomes for all people with chronic conditions.
This month, let us increase our awareness of childhood obesity, and create environments where children and families can get healthier food and be more active. But let us also increase our awareness of sickle cell disease, and commit ourselves to creating a healthcare system that meets the needs of individuals with this condition. In so doing, we will create a system that will better care for all of us.