July 27, 2016
Health Resources and Services Administration
Office of Management and Budget
Re: Sickle Cell Disease Treatment Demonstration Program — Quality Improvement Data Collection (OMB No.: 0906-xxxx-NEW)
Dear Sir or Madam,
The Academy of Nutrition and Dietetics (the “Academy”) appreciates the opportunity to submit comments to the Health Resources and Services Administration (HRSA) regarding its June 27, 2016 public comment request "Sickle Cell Disease Treatment Demonstration Program—Quality Improvement Data Collection" (OMB No.: 0906-xxxx-NEW). Representing over 100,000 registered dietitian nutritionists (RDNs),1 nutrition dietetic technicians, registered (NDTRs), and advanced-degree nutritionists, the Academy is the largest association of food and nutrition professionals in the United States and is committed to improving the nation's health through food and nutrition across the lifecycle. Every day we work with Americans in all walks of life — from prenatal care through end of life care — providing nutrition care services and conducting nutrition research.
The Academy supports the Sickle Cell Disease Treatment Demonstration Program (SCDTDP) and its intentions "to improve access to services for individuals with sickle cell disease, improve and expand patient and provider education, and improve and expand the continuity and coordination of service delivery for individuals with sickle cell disease and sickle cell trait." We offer additional specific comments below.
We are pleased that the SCDTDP is focused on the coordination of service delivery. A recent study suggests that there is significant room for improvement in effective care coordination for children with special health care needs, particularly black and Latino children.2 As the study notes, "[i]t is concerning that parents of children with the greatest medical needs and minority groups, who historically have not received high-quality health care, also reported having more unmet care coordination needs more frequently than children without special health care needs and white children."3 This suggests that access to health care itself is insufficient, and that quality care processes must be assured.4 By ensuring the availability of RDNs at Federally Qualified Health Centers and other facilities at which patients at risk for sickle cell disease are accessing care, HRSA can reduce costs and improve health among this population.
The Academy encourages ongoing collaboration with the National Heart, Lung, and Blood Institute at the National Institutes of Health given the significant nutrition research they plan to conduct on this issue. This research will include efforts to
- "[i]nvestigate energy balance and nutrient requirements among children with sickle cell disease, especially children who fail to thrive, and adolescents who are in a rapid growth phase" and
- "[i]nvestigate racial, ethnic, and gender differences in nutrition-related cardiovascular disease risk, nutrient metabolism, dietary habits, and responsiveness to dietary intervention."5
As part of this collaboration, the Academy encourages the SCDTDP to look more closely at the role of nutrition in the delay of sickle cell disease and the prevention of long-term complications. Research suggests that omega-3 fatty acid supplementation in patients with sickle cell anemia may reduce the probability of experiencing a vaso-occlusive crisis.6 Sickle cell disease is also associated with low calcium intake, vitamin D deficiency, and poor appetite, which can lead to delayed growth and development in children.7,8 RDNs are uniquely able to assist patients and clients with improving nutritional intake through whole foods and supplementation when indicated.
The Academy appreciates the opportunity to comment on the data collection regarding the SCDTD. We would be grateful for the opportunity to discuss these recommendations in greater detail in the near future with you. Please contact either Jeanne Blankenship at 312/899-1730 or by email at firstname.lastname@example.org or Pepin Tuma at 202/775-8277, ext. 6001 or by email at email@example.com with any questions or requests for additional information.
Jeanne Blankenship, MS, RDN
Policy Initiatives and Advocacy
Academy of Nutrition and Dietetics
Pepin Andrew Tuma, Esq.
Government & Regulatory Affairs
Academy of Nutrition and Dietetics
1 The Academy approved the optional use of the credential "registered dietitian nutritionist (RDN)" by "registered dietitians (RDs)" to more accurately convey who they are and what they do as the nation's food and nutrition experts. The RD and RDN credentials have identical meanings and legal trademark definitions.
2 Toomey SL, Chien AT, Elliott MN, Ratner J, Schuster MA. Disparities in unmet need for care coordination: the national survey of children's health. Pediatrics. 2013;131(2):217-24.
4 Ibid (internal citations omitted).
5 See., e.g., NIH Nutrition Research Report 2013 & 2014. Accessed July 22, 2016.
6 Daak AA, Ghebremeskel K, Hassan Z, et al. Effect of omega-3 (n-3) fatty acid supplementation in patients with sickle cell anemia: randomized, double-blind, placebo-controlled trial. Am J Clin Nutr. 2013;97(1):37-44.
7 Rovner AJ, Stallings VA, Kawchak DA, Schall JI, Ohene-frempong K, Zemel BS. High risk of vitamin D deficiency in children with sickle cell disease. J Am Diet Assoc. 2008;108(9):1512-6.
8 Kawchak DA, Schall JI, Zemel BS, Ohene-frempong K, Stallings VA. Adequacy of dietary intake declines with age in children with sickle cell disease. J Am Diet Assoc. 2007;107(5):843-8.