Looking at the NASEM Report: How Society Contributes to the Disease

Nancy René's Looking at the NASEM Report Series How Society Contributes to the Disease The first chapter of The National Academies of Sciences, Engineering, and Medicine (NASEM) Report—Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, titled Introduction, outlines information about the science of sickle cell disease (SCD) and sickle cell trait. This chapter contains useful sections about the healthcare system, policy making and funding. But I know that my time with you is limited—you will get busy doing other work—so I decided to get right into one of the critically important chapters: Societal and Structural Contributors to Disease Impact. Wow, that’s huge. My purpose in writing this blog is to give readers information they can use to advance the case for better healthcare for those with SCD. As I read through this chapter and began to take notes, I felt vindicated that the beliefs I hold are verified by experts in the field." I will restate the Chapter Summary:

• There are numerous cultural, environmental and economic factors that influence outcomes for those with the disease.
• The SCD population has contended with racism and bias in the healthcare system and is stigmatized because of cultural beliefs. Meaningful policy could help counter the cultural and economic burden of the disease.
• Coping mechanisms such as religion and spirituality have some positive effects.
• While health needs take precedence, non-health needs should be addressed to improve overall outcomes.

This chapter is very thorough and complete in expanding the points made in the summary. The authors spend time on pain management and misperceptions about how Black people experience pain. There is also a nice section on mental health and self-esteem in sickle cell families. Like all of the others, this chapter ends with a list of conclusions and recommendations. The recommendations are:

• To make sure that people with sickle cell can qualify for disability insurance
• States should expand and enhance vocational rehabilitation for those with sickle cell
• The Department of Health and Human Services should engage the media to improve awareness about the disease

The problem with all of this is that while the summaries and recommendations are valid, there is no way to see that it happens, no budget, and no agency that seems ready to take on the challenge. When you are finished reading these chapters and digesting the information, there are a couple things I hope you will do: 1) Visit your representatives in Congress or at the state level and share your sickle cell stories with them; 2) Become aware of budget cycles in your state and find out if anyone is pushing legislation that can address some of the issues that the NASEM Report identified. Do you belong to a sickle cell group that is able to do the work? Are there other chronic disease organizations that have similar goals? It is easy to get overwhelmed—so much to get done and so many disinterested folks. Please use the SMART Social Wall to share how you got something done, who you worked with and what you were able to do. Complaining is easy, work is hard, …but when you’re done you can look back, BREATHE and SMILE. Nancy M. René Co-Founder, JVT Advocates Los Angeles, California, United States