Looking at the NASEM Report: We’re Almost Done

Nancy René's Looking at the NASEM Report Series We’re Almost Done I had been reading Chapter 7, Developing and Delivering the Next Generation of Therapies, when I came across one of the most important points in the whole dense publication. Here’s the quote, “Because traditional fee-for-service models of reimbursement provide little direct incentive for physicians to maximize quality or avoid wasteful spending, several recent reforms have attempted to strengthen physician incentives for quality and efficiency.” Wow. So far I haven’t seen any reforms aimed at the sickle cell population, and I think I understand why. The material in this chapter is difficult to understand, and when I attempt to understand difficult material I look to anecdotes and stories that might shed a light on the issue. I’ll use the AIDS epidemic as my anecdote. When we first became aware of AIDS, it seemed to affect those people, folks who were easily marginalized or dismissed. But then when Magic Johnson disclosed his AIDS status, things turned around. Something like that hasn’t happened for those with sickle cell. We remain on the fringes, not really able to take advantage of the therapies currently available because it is still OK for doctors to be uninformed or refuse to treat. With the gaps in healthcare exposed by coronavirus disease, people are beginning to take notice. Unfortunately, progress still seems to be moving at a snail’s pace. The Report ends with Chapter 9, Strategic Plan and Blueprint for Sickle Cell Disease Action. The actions seem like good steps, unfortunately I don’t see where those steps are identified in a way that might force various governmental agencies to act. I guess that’s where all of us have to get busy. The strategies and recommendations can be found on pages 401 to 415. oneSCDvoice includes patient advocates from all across the United States. Please read through the recommendations with your group and see what strategies might be possible for you. Eighteen years ago when I became an advocate for sickle cell disease, we thought that better understanding of the disease would help our loved ones who were struggling—and it has. But as time goes on, I realize that much more has to happen if we are to improve medical care and prolong life. So to all of my students, I hope you got something out of these missives. I implore you to continue the fight so that the next generation can finally overcome this disease and live longer, healthier lives. Take care. Nancy M. René Co-Founder, JVT Advocates Los Angeles, California, United States