Looking at the NASEM Report: The Core Issues We Face as a Disease Community

Nancy René's Looking at the NASEM Report Series The Core Issues We Face as a Disease Community Dear students, I hope you have continued to read and think about The National Academies of Sciences, Engineering, and Medicine (NASEM) Report—Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action. This chapter Delivering High-Quality Sickle Cell Disease Care with a Prepared Workforce, is critically important, it points to the core issues we face as a disease community. I’m going to post the Chapter Summary here so that you won’t have to click to find it—it’s that important.

• Providing high-quality care for sickle cell disease (SCD) requires identifying evidence-based services for individuals with SCD and the availability of a trained and willing multidisciplinary workforce.
• More evidence is needed to establish clinical guidelines and quality indicators for the management of SCD.
• Adherence to the two National Quality Forum-endorsed measures (i.e., high-quality, evidence-based measures) is poor.
• There are significant workforce training needs to achieve high-quality care in SCD.
• Although a multidisciplinary team approach is recommended, there is little or no evidence that this is occurring consistently across the institutions providing care for individuals living with SCD.

Wow, that pretty much says it all. The chapter goes on to expand on these ideas, but I’m stuck right here. I feel I must share my opinion and I hope you’ll respond. I don’t know how to get this done. We patients and advocates would probably agree with all of the recommendations, we’ve been trying to push for changes like these for many years, yet improvement in the treatment of sickle cell remains elusive. I remember when the data came out about women and heart disease. The statistics showed that women experienced heart attacks differently from men and there was a lot of information and training around this issue. At the hospital where I volunteer, there is a huge picture of Barbra Streisand who donated money for training and treatment. (Remember, I live in L.A.) For me, this uncovered the obstacles we face trying to make change and remove barriers to care in sickle cell.

• In order to change, people have to want to change. They have to see the new way as better, more effective. That happened with women in heart disease, it hasn’t happened in sickle cell.
• In order to change, people have to be trained on the new skills. Although I’m sure this training exists, and a few hospitals are doing a great job, the culture of many hospitals hasn’t changed. Somehow people with sickle cell are not that important.
• In order to change, people have to be compensated for making the change. The compensation can come with monetary rewards, promotions or even knowing that one has done the right thing. In many areas of medicine other diseases are simply a higher priority, and the compensation for improvement in whatever form is simply not enough.

Well class, we’re getting to the end of our study on the NASEM Report. For the last lesson we’ll review some of the recommendations and explore new therapies. Until then, please think about how you might address the issues I’ve raised about making needed changes. I need your help, all of us need your help. Nancy M. René Co-Founder, JVT Advocates Los Angeles, California, United States