September was National Sickle Cell Awareness month. This means it was not only an important time to consider how the disease affects those who suffer with it, but more importantly, a time to consider the health disparities that exist around the condition and identify what can be done about those differences. Currently 1 in 13 African Americans carry the trait, which means 1 out of every 500 newborn black infants is at risk for inheriting Sickle Cell Disease (SCD). Like other genetic diseases, notably Cystic Fibrosis and hemophilia, SCD is diagnosed at birth. The problem, however, is there is much less support and access to care for SCD than either of these other genetic disorders. One of the first problems is that there are fewer disease centers specializing in SCD. The centers that do exist are often underutilized. In addition, consistent funding has not been a priority in past years. Cystic fibrosis is eight times more likely to receive funding even though there are more people suffering with SCD than CF.
The cost of managing SCD is substantial. Many adults and children suffering with SCD are on Medicaid. The cost per year can range from $35,500 to $112,000 for children and up to $231,000 for adults. The Medicaid costs for hemophilia range from $17,800 to $35,000 based on date from 2016. This is a huge difference. The monetary barrier to treatment leads to poor outcomes, and the median age for death for those with SCD is 45, much lower than the national average. Because many of the patients with SCD are on Medicaid and often live in underserved areas, they often lack primary care providers who specialize in the disease. This means that they end up relying on emergency room visits to handle their symptoms. For the most active Medicaid users, SCD is the 5th most common discharge diagnoses across hospitals. Patients with SCD often suffer with intense pain that is severe and unpredictable. When these patients seek help at hospitals, they wait longer for pain treatment than others and are often not believed or taken seriously.
This could be in part due to the lack of specialists that exist when it comes to this specific disorder. They don’t have the proper training, and there simply aren’t enough existing jobs to warrant more specialists entering the field. When taken together, this adds up to substantial disparity in health care for an entire population of people. It’s not enough to simply be aware of the disease; instead, we have to come up with a better way to help those with SCD get the care they need to live long and prosperous lives. It means we must figure out how to get more funding allocated for SCD. We must educate the providers and the community on what the disease is, how it screened for and passed on genetically. Treatment plans, and prevention are extremely vital to the management of it. There is no reason why it should cost so much more to care for these patients than other patients with similar genetic diseases. It all starts with awareness; we need to be aware that this is a significant problem in our communities. Let’s start speaking out about it. Every month is the perfect opportunity to get involved and get vocal.