Can Patients and Providers Eliminate Health Inequities in Treating Sickle Cell Disease?

Dr. Andrew Campbell shares how communities, patients, and providers can eliminate health inequities in Sickle Cell Disease (SCD). He advocates to reach out to community based organizations (CBOs), health care industry stake holders, as well as legislative representatives. Dr. Campbell asserts that if the general population is informed about SCD as a chronic and debilitating condition, then this awareness can secure resources from the National Institute of Health (NIH), fund pharmaceutical research for new drugs, and educate families. There are 100,000 SCD patients living in the US. Despite early infant screening and diagnosis, there are disparities in treatment for adult patients versus youth living with the disease. Dr. Campbell emphasizes we investigate why adult and pediatric patients are receiving different levels of care. We need more healthcare providers -- hematologists, nurse practitioners, and physician assistants – to continue care beyond pediatrics.

Dr. Andrew Campbell, Sickle Cell, CBOs, NIH, pharmaceutical research, infant screening, CASiRe, pediatric sickle cell, Children's National Health

About this expert

Andrew Campbell, MD

Director, Comprehensive Sickle Cell Program

Children’s National Health System


Director of the Consortium for the Advancement of Sickle Cell Disease Research (CASiRe)

Transcript

Q: Dr. Campbell, you’ve been doing this a long time. What can communities, patients, and providers do to eliminate health inequities in SCD?

 
Dr. Andrew Campbell: I think joining community advisory boards -- I mean community-based organizations. So by joining community-based organizations or talking to your key stakeholders or legislative representatives in congress or other key stakeholder leaders in the healthcare industry and in the government. We need to inform the general population of this chronic debilitating condition so that it can raise awareness to the general population. That this is something that shortens your life span, it causes frequent cause of pain and continued end organ damage as you age. So that we can bring more resources from the NIH [National Institutes of Health] for example, also from the pharmaceutical companies to invest money for new drugs, for new research to understand why patients are so different from one another with the same condition. We need to inform them that this is the number one genetic condition on the United States newborn screen – over 100,000 patients living in the United States with Sickle Cell Disease. 


Dr. Andrew Campbell: We need to inform them that more of our pediatric patients in the first and second decades of life are living, but we’re struggling to keep the same level of care for our adult patients with sickle cell disease. Because sickle cell disease is an ongoing condition of end organ damage of different organs in the body leading to reduced life span. So, we feel that we have to investigate why adult patients are not having the same benefits and the same clinical picture in pediatric patients as adults. So, we need more healthcare providers, hematologists, Nurse Practitioners, PAs [Physician Assistants] to continue to carry the care for adult patients with Sickle Cell Disease because there is inequity in that.

 

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