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The American Society of Hematology (ASH) is committed to addressing the burden of sickle cell disease (SCD) and is undertaking a multifaceted initiative to improve outcomes for individuals with the disease, both in the United States and globally. ASH has engaged a broad group of experts and stakeholders to review the state of SCD and identify the greatest opportunities for improvement. ASH continues to invest in and explore the important actions needed to make a significant difference in SCD access to care, research, and global issues. Related content

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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

https://www.youtube.com/watch?v=GbJasFgJkLg

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

Nancy René's Looking at the NASEM Report Series Let's Get Started When I start a huge reference book like The National Academies of Sciences, Engineering, and Medicine (NASEM) Report—Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action—I usually don’t go in order from the first chapter to the last, I’m interested in seeing where the information comes from, who the authors are and what was their purpose. The NASEM report came about when the Office of Minority Health asked the Health and Medicine Division at NASEM to develop a strategic plan to address sickle cell disease in the United States. I checked this out and thought, "OK good, this addresses most of the concerns that people have shared with me through the years of my involvement with sickle cell." Next I wanted to see who had been involved in actually writing the Report, was there anyone I knew? For that I had to skip back to Appendix C where I found some familiar names. First there was Dr. Ify Osunkwo who runs a large sickle cell program and teaches at the University of North Carolina, Chapel Hill. She is a knowledgeable and enthusiastic doctor who has presented at several national conferences. She is always a pleasure to listen to. Next I came to Susan Paulukonis from the Sickle Cell Tracking Program in California. Susan has been very helpful in providing data on the sickle cell population in California. These are data that can be used in making presentations on issues facing our community. I am glad that someone who understands this aspect of the disease was part of the committee. The last person I knew in this powerful group was Dr. Kim Smith-Whitley. I met her when we were both Board Members at the Sickle Cell Disease Association of America, Inc. (SCDAA) and have heard her presentations over the last several years, both at SCDAA conventions and for Cayenne Wellness Summits in California. She runs a large sickle cell program at Children’s Hospital of Philadelphia and understands both the medical and social needs of her patients. I am so glad she put her time and expertise into this document. I hope you will check out the people who contributed to this report, in fact that’s your first Homework Assignment. The link to Appendix C is here. Please use the SMART Social Wall to tell us a little about anyone you know who has been involved in this Report. I’m getting excited to learn more about this report, and I hope you are too. I know that a group of knowledgeable people can really begin to overcome the barriers to effective healthcare for those with sickle cell. Remember, you have homework! Nancy M. René Co-Founder, JVT Advocates Los Angeles, California, United States

Susan Paulukonis is a rare disease epidemiologist, focused on public health surveillance of non-reportable diseases of significant impact and their effect on the people living with them. Health disparities within the populations living with these diseases or across similar conditions are of special interest in her work. Beginning in 2006, Ms. Paulukonis transitioned from earlier work in educational research to the study of sickle cell disease, a severe and life-threatening genetic condition. She managed the first public health surveillance programs for sickle cell and thalassemias, a related genetic hemoglobin disorder, beginning in 2010. She has been PI for the California Sickle Cell Data Collection Program at Tracking California since 2015, with additional funding for this work received in 2019 from the state of California. Ms. Paulukonis received a BA in History and an MA in Educational Technology from San Francisco State University, and an MPH degree in Epidemiology and Biostatistics from the University of California, Berkeley. She resides in Atlanta, GA, and makes program-related visits to California frequently.   Representative Publications: Cancer Specific Survival in Patients With Sickle Cell Disease Acute Care Utilization at End of Life in Sickle Cell Disease: Highlighting the Need for a Palliative Approach Concurrent Use of Hydroxyurea and Deferasirox in Californians With Sickle Cell Disease Impact of Medicaid Expansion on Access and Healthcare Among Individuals With Sickle Cell Disease   Online profile

Nancy René's Looking at the NASEM Report Series Series Introduction As some of you know, I spent my career in education. I taught mathematics in the Los Angeles Unified School District before becoming a principal at one of the inner-city high schools. Well, once a teacher, always a teacher. During a Sickle Cell Disease Association of America (SCDAA) conference call, I learned of The National Academies of Sciences, Engineering, and Medicine (NASEM) Report—Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action—and was surprised that I had not heard of it. I try to keep up-to-date on most sickle cell publications, yet this one had slipped by. The report is huge, almost 500 pages, published in 2020 by NASEM. It is the work of 14 committee members, many of whom are well-known sickle cell experts, along with reviewers chosen for their diverse perspectives and expertise. I started by reading the summary, it’s only 4 pages and easily downloadable. Once I digested the summary and moved on to the entire book, I realized that this publication is an essential part of the advocate’s library. If you are trying to help a hospital make policy or working with a lawmaker to create legislation, this is the book you need. I thought about how I might help to get the ideas in this report to advocates all across the country and I thought that oneSCDvoice could be the perfect place. Every few weeks I plan to summarize a chapter of the Report with a link to the original so that you can get into the material in reasonable chunks. If I’ve misrepresented something or left out a key idea, you can respond in the SMART Social Wall. In that way, we can have a meaningful conversation on important topics—a conversation that can help us discuss these issues with decision-makers in our communities. I hope you like this idea and I look forward to receiving your feedback. You can start by reading the summary of the NASEM Report here. Nancy M. René Co-Founder, JVT Advocates Los Angeles, California, United States

Edward Donnell Ivy, MD, MPH uses his personal and professional experiences to improve care for individuals with health conditions, including sickle cell disease, by working collaboratively to strengthen the public health infrastructure.  Currently, Dr. Ivy is the Director for Community Programs with the Association of Black Cardiologists, Inc. (ABC).  Prior to joining the ABC, Dr. Ivy worked with the Maternal and Child Health Bureau (MCHB) of the Health Resources and Services Administration (HRSA) as the Program Director of the Hemoglobinopathies Program, which included the Sickle Cell Disease Treatment Demonstration Program (SCDTDP), the Sickle Cell Disease Newborn Screening Program (SCDNBSP) and the Thalassemia Program.  Dr. Ivy worked at the National Heart, Lung and Blood Institute (NHLBI) of the National Institutes of Health (NIH), where he was part of the team that developed the NHLBI Sickle Cell Disease Treatment Recommendations of 2014.