Thirty years ago, the first major federal legislation concerning sickle cell disease treatment was passed, resulting in the development of comprehensive sickle cell centers. We are now at another watershed moment in the treatment of this illness with the passage in October 2004 of the Sickle Cell Treatment Act, designed to substantially expand specialized sickle cell treatment programs. This legislation offers a remarkable opportunity to significantly improve health outcomes for individuals with sickle cell disease if it is implemented with a specific focus on the distinct but related issues of equity and quality. Despite major advances in sickle cell disease treatment that have occurred over the past 3 decades, important gaps exist both in the equity of government and private philanthropic support for research and in the uniform provision of high quality clinical care. This article assesses the current gaps in funding support and in the implementation of improvements in clinical care in order to suggest strategies for making optimal use of the opportunity that the new legislation presents to improve the health of all individuals affected by this disease.
Three decades after the publication of Robert Scott’s1,2 influential critiques of the status of research and clinical care for sickle cell disease (SCD), “Health Care Priority and Sickle Cell Anemia” and “Sickle Cell Anemia: High Prevalence and Low Priority,” we are at another watershed moment in the history of SCD treatment. Scott’s articles were pivotal in influencing subsequent congressional hearings that lead to the passage of the first major legislation concerning SCD treatment, the National Sickle Cell Anemia Control Act, in 1972, which increased funding for SCD, primarily through the development of comprehensive sickle cell centers.3 Scott emphasized the relationship between the status of SCD research and civil rights and argued for “increased priority and attention by both the public and the health professions,” because, at the time, SCD received less public and professional support compared with other less prevalent diseases, such as cystic fibrosis, despite having a substantial public health impact.1,2
The passage of the Sickle Cell Treatment Act in October 2004, designed to substantially expand specialized sickle cell treatment programs, offers a remarkable opportunity to significantly improve health outcomes for individuals with SCD if the legislation is implemented with a specific focus on the distinct but related issues of equity and quality. Important gaps exist in the equity of research funding allocation and private philanthropy and in the provision of high-quality clinical care, despite major advances in treatment.
In this article we assess the current gaps in funding support for SCD and in the full implementation of clinical advances in order to suggest strategies for making optimal use of the opportunity that the newest legislation presents to improve the health of all individuals affected by this disease. The issue of equity and quality in SCD care is of particular relevance to pediatricians and child health policy scholars, because pediatric providers are on the forefront of treating this disease in the first 2 decades of life.
SIGNIFICANT GAPS PERSIST IN PUBLIC AND PRIVATE SUPPORT FOR RESEARCH AND CLINICAL CARE
In the United States, there are >80000 people affected with SCD.4 It affects 1 in 400 blacks and 1 in 19000 Latinos and has a carrier rate of 1 in 12 and 1 in 100 for black and Latino populations, respectively.4,5 In 1970, Scott1 highlighted a substantial difference in the research effort for sickle cell anemia compared with other chronic childhood diseases, measured by the number of National Institutes of Health (NIH) grants. Scott1 noted that there were 3 times as many grants for the more highly publicized conditions of cystic fibrosis and muscular dystrophy as there were for SCD. Subsequent to the passage of the 1972 SCD treatment legislation, the total number of grants for SCD increased by a factor of 10 (Table 1). Although we might now better assess research effort by overall funding rather than the number of grants, a gap in the research effort remains (Table 1). Although NIH is not the only source of funding for medical research, it is the major governmental resource, so disparities in NIH funding have important implications for research effort. For 2004, NIH reports spending $90 million on SCD across all of its institutes.6 This funding figure includes all of the research that NIH deems either directly or peripherally related to SCD. This contrasts with $128 million NIH spent on cystic fibrosis, which affects 30000 individuals in the United States (Table 1). Although per capita expenditures do not fully capture the differing experiences of disease by individuals, it is notable that NIH allocates almost 4 times more funding per person affected with cystic fibrosis as it does for those affected by SCD. These levels of funding have been essentially stable over the past 4 years.6
Trends since 1975 in the number of research grant requests for application (RFAs) for SCD and cystic fibrosis are presented in Fig 1. There were not substantial differences until 1990 when the increase in the number of RFAs for cystic fibrosis research outstripped the number of RFAs for SCD research. Notably, in the wake of the 1975 SCD legislation, the number of RFAs for programs and centers was initially higher for SCD; however, the numbers were comparable after 1985.7 In recent years, funding has been earmarked to establish an SCD clinical research network, which is focused on translating results from basic science trials to phase III clinical trials.8
In addition to the gap in federally sponsored research, there is also a substantial difference in how extensively the private sector has been mobilized to support SCD research and clinical care, which Scott2 also noted in 1970. For example, for fiscal year 2003, the Sickle Cell Disease Association of America’s total revenue was $498577, compared with $152 million for the Cystic Fibrosis Foundation, a 300-fold difference that has substantial implications for the Sickle Cell Disease Association of America’s ability to support research and advocacy (Table 1). For example, the Cystic Fibrosis Foundation has established the Therapeutic Development Program to provide matching research funds to stimulate the development of new treatments and the Therapeutic Development Network to promote the coordination of clinical trials.9 The Sickle Cell Disease Association of America does not have the resources to launch such broad initiatives. When NIH and private support are combined, the funding gap between SCD and cystic fibrosis triples. Based on the combined NIH and private funding, there is >8 times more support per person affected by cystic fibrosis than that for those affected by SCD (Table 1).
THE ROLE OF PRIVATE ORGANIZATIONS IN RESEARCH AND CLINICAL CARE: BEYOND FUNDING
Private charities can do much to improve care and outcomes for those with particular conditions, in addition to providing direct funding for research. First, these organizations provide national advocacy by creating public demand for funding for scientific and clinical advances. People with a limited knowledge of muscular dystrophy are likely familiar with the Jerry Lewis telethon, which mobilizes public support, in addition to generating funding, for muscular dystrophy research. The Cystic Fibrosis Foundation has actively engaged in legislative advocacy and regularly presented testimony to Congress about NIH funding and to the Institute of Medicine regarding research efforts.10,11 Although SCD organizations made very important contributions to the passage of the recent sickle cell legislation, overall they have not been as successful in generating general public support as other organizations.12 Second, private philanthropic organizations serve as valuable resources for patients with the disease and can educate and empower individual patients to advocate for the best care available. Third, these organizations reduce the stigma frequently associated with chronic diseases by disseminating positive images and information about the disorder. Without this effort, children with SCD are left with the 50-year-old social stigma of “bad blood” and other negative and embarrassing images.2,13 Lastly, private philanthropic organizations support the quality of health care delivery to affected patients. The Cystic Fibrosis Foundation is a leader in this role of assuring and improving the quality of care by supporting the development and implementation of clinical practice guidelines and a formal accreditation process for cystic fibrosis care centers. These accredited care centers receive funding from the foundation to support the delivery of quality care to cystic fibrosis patients and are required to submit data to a patient registry. The registry tracks morbidity and mortality of the disease, as well as the practice patterns and outcomes at individual care centers.14 The variability in practice patterns and outcomes evident in the registry has served as a stimulus for the Cystic Fibrosis Foundation to launch an ambitious quality improvement initiative aimed at identifying and disseminating “best practices” throughout their care center network. All of these efforts require financial and organizational resources, and, in this arena, SCD patients have been left behind.
CLINICAL AND QUALITY IMPROVEMENTS IN SICKLE CELL CARE
In addition to the ongoing lack of equity in public research funding and private sector involvement, the current status of SCD can be further evaluated in the context of equity in the quality of clinical care. In the 3 decades since the Scott articles,1,2 despite continued funding gaps, there have, nevertheless, been substantial improvements in SCD treatments, leading to an increase in life expectancy from 14 years in 1973 to the mid- to late 40s now (Table 2). 15–17 Recent survival data indicate an 85.6% overall survival and an 88.5% stroke-free survival at age 18, substantially higher than the 50% overall survival when Scott wrote his commentaries.1,17 From 1968 to 1992, mortality has decreased 40–50% in children with SCD.18 The reduction in mortality is attributable to several factors. First, all but 2 states have universal newborn screening for SCD that allows for the initiation of secondary and tertiary prevention and management strategies from birth, such as penicillin prophylaxis, which was proven effective at preventing invasive bacterial infections in 1986.19 Recent cohort data indicate that only 20% of deaths before adulthood are because of infection, compared with much higher proportions in prior cohorts of SCD patients.17 Second, the institution of hydroxyurea as a treatment has decreased painful crises and reduced mortality by 40% in adults with SCD.20,21 Third, the Stroke Prevention Trial in Sickle Cell Anemia demonstrated the effectiveness of preventing this potentially devastating complication by screening patients with transcranial Doppler studies, followed by appropriate initiation of transfusion therapy.22 A recent study demonstrated a 75% decline in stroke rates in children in the 3 years after the Stroke Prevention Trial findings were published.23 Although it has not been widely used, bone marrow transplantation has been demonstrated to successfully treat SCD in selected patients.24
Simultaneously, during the past decade, there has seen substantial growth in the field of quality improvement, with efforts aimed at improving systems of clinical care. The Institute of Medicine reports, Crossing the Quality Chasm and To Err is Human highlight the rationale for these efforts.25–29 Quality improvement strategies have been used extensively to assess and enhance care for adult and pediatric patients with other chronic diseases, such as asthma, diabetes, heart disease, and renal disease, among others.30 A recent study of Medicare beneficiaries needing dialysis showed that quality improved for all patients and, importantly, that the quality gap between white and minority patients narrowed when quality improvement strategies were instituted.31 Although quality improvement has been embraced by leaders in medicine as an indispensable part of health care, these effective tools have not been incorporated routinely and effectively in the clinical care of patients with SCD.
EQUITY IN THE EMPHASIS ON AND AVAILABILITY OF QUALITY CARE
Given the notable advances in SCD care, the gap in ensuring widespread adoption of effective practices and their delivery in a context that meets child and family needs is of the gravest concern.30,32 Consensus reports on SCD management, such as the National Heart, Lung, and Blood Institute (NHLBI) guidelines, The Management of Sickle Cell Disease and the American Academy of Pediatrics Policy Statement “Health Supervision for Children With Sickle Cell Disease” outline for both primary care and specialty physicians what high quality, comprehensive sickle cell care should include, such as: the provision and coordination of care through a medical home, the integration of primary and specialty care, family and patient education regarding symptoms of serious complications, genetic counseling, prevention of infection through antibiotic prophylaxis and vaccination, screening for stroke risk and neurocognitive testing, judicious use of properly screened blood transfusions, appropriate pain management, treatment of renal complications, and regular ophthalmologic evaluations.5,16,33–35
However, there is no coordinated process to ensure the widespread adoption of treatment guidelines and no requirement for NHLBI-funded comprehensive sickle cell centers to track their implementation or assess their effectiveness, such as occurs through the cystic fibrosis registry.36 Because there are effective treatments, meaningful access to these treatments can improve patient outcomes. In many areas of the country, pediatricians share responsibility with hematologists for caring for children with SCD. It is the minority of sickle cell patients who receive care in one of the comprehensive sickle cell centers.8 Many primary care providers who practice in settings outside comprehensive sickle cell centers may not be fully aware of treatment guidelines. There is also a crucial need to increase the workforce capacity to care for adult patients with SCD to provide appropriate continuity of care for adolescents transitioning to adult care.8
The limited evidence on the quality of SCD care suggests that the significant gains in clinical care for SCD have not been uniformly distributed. For example, although penicillin prophylaxis is effective in preventing morbidity and mortality because of invasive pneumococcal disease, recent data demonstrate inadequate prophylaxis rates among publicly insured children compared with their privately insured counterparts.37,38 Studies have also noted rural-urban differences in functioning and health care use among patients with SCD.39 Quinn et al,17 in a discussion of the survival outcome for their Dallas cohort, state that the encouraging “survival estimates from our study also reflect the availability of specialized sickle cell disease-related care, which does not, unfortunately, apply to every child with sickle cell disease in the United States.” In support of this assertion, geographic differences exist in the mortality of young children with SCD. Mortality varies 16-fold between those states with the lowest and highest rates; even wider disparities are apparent at the county level.40 Because it is unlikely that these differences in health outcomes are related to geographic differences in underlying disease severity, such disparities are more likely attributed to variation in factors, such as the adoption of high-quality care practices. The lack of systematic research on quality and access issues is striking in this context.39
Thus, the promise of quality improvement remains incompletely used within SCD care. The diffusion of medical knowledge is often slow and uneven.41 The manner in which innovations, such as specific clinical advances or quality improvement strategies, spread can serve either to improve or exacerbate racial disparities. The more effective the technology is, the more likely unequal access to it will worsen disparities.42 The widely different geographic rates of child mortality indicate that this dynamic is likely at work in the case of SCD. We know very little about what proportion of patients with SCD actually get the type of care recommended in published guidelines, what the barriers are to uniform provision of this care, and what needs to be done to overcome them. For example, currently there is no way of knowing how many patients are offered hydroxyurea treatment when appropriate. A predominant focus on research rather than also promoting the effective incorporation of important clinical advances into actual SCD care delivered within and outside comprehensive treatment centers misses the opportunity to improve outcomes for children and adults with this disease.
A CONSIDERATION OF RACE IN THE TREATMENT OF SCD
There is no denying that race matters in the United States: as a country, we continue to struggle with the implication of past and present racial bias for health. Racial and ethnic disparities in health and health care are described in the Institute of Medicine’s report, Unequal Treatment and the Secretary of Health and Human Services National Health Care Disparities Report.43–45 In general, these and other reports focus on racial and ethnic differences in diagnosis, treatment, and outcome within the same disease or condition. SCD is largely absent from discussions of disparities precisely because it predominantly affects patients of 1 race; hence, there are no racial differences in care or outcome within the condition. However, the focus on intracondition differences obscures important considerations of differences in outcomes between conditions that may disproportionately affect different sectors of the population.
The question of race has been inextricably linked with SCD since its recognition as a distinct disease.12,13 Although it is uncomfortable to contemplate, we must consider the possibility that conscious or unconscious racial bias adversely affects the availability of resources not only for research and the delivery of care, but also for the improvement of that care.46 Systematic approaches to quality, including guidelines, registries, and the examination and reduction of variation, offers an effective strategy to improve quality of care generally and may be especially powerful at removing any potential racial biases to ensure that individuals with SCD receive high-quality care.
Thirty years after Scott’s1,2 influential commentary, we can create another watershed moment in the history of sickle disease care by thoughtful implementation of the important recent legislation, the Sickle Cell Treatment Act. Just as basic and clinical research and early identification benefited after the passage of the SCD legislation in 1972, equity and quality in SCD care will occur if it is explicitly funded. The recent legislation, signed into law in October 2004, was designed to expand specialized sickle cell treatment programs.47 The law provides funding for genetic counseling, community outreach and education, and the establishment of 40 SCD treatment centers. Specific details on which entities will be eligible to receive funding from the legislation have not been fully outlined. However, it seems that community health centers will be encouraged to partner with comprehensive SCD treatment centers to increase access to high-quality care in areas where there is currently no NHLBI-funded SCD center. In 2004, Congress appropriated $200000 for the establishment of a demonstration program and a National Coordinating Center to coordinate and distribute data, best practices, and results from the activities of the 40 sickle cell treatment centers, as well as to develop educational materials and model protocols for the prevention and treatment of SCD. In December 2005, the Senate approved $2.2 million to fund the new law.48
This period after the Sickle Cell Treatment Act has been signed into law offers a unique opportunity for all of the agencies responsible for funding SCD research, clinical care, and quality improvement to make considerations of equity and quality an explicit priority in both the specific implementation of the law and in overall funding priorities more generally. The following recommendations could facilitate this effort.
First, the Health Resources and Services Administration, charged with overseeing the National Coordinating Center, should ensure that the center emphasizes the diffusion of clinical advances by requiring that all clinical programs use the clinical patient data collection registry already being developed for the 10 existing NIH-funded comprehensive sickle cell centers and that these data at the organizational level be available to the public.49 This registry can serve as a model for collecting and disseminating data on clinical care and outcomes that would be adopted by all 40 of the proposed clinical centers, as well as other nonfederally supported SCD care centers. Implementation of such a disease registry will provide robust data on provider practices, use, and guideline implementation. Such data are lacking for health services and outcomes research related to SCD.
Second, the Center for Medicare and Medicaid Services, responsible for reimbursing clinical services, genetic counseling, and community education, should mandate reporting of quality of care data before federal matching funds will be disbursed.
Third, NIH and the Agency for Healthcare Research and Quality (AHRQ) should make the consistent implementation of scientific advances in clinical care for SCD an explicit funding priority. Both AHRQ and NIH have highlighted the importance of focusing on improving knowledge diffusion, AHRQ through its Translating Research into Practice initiative and NIH through its initiative on “reengineering the clinical research enterprise.”50,51 NIH is appropriately beginning to shift more attention to expanding the idea of “translational research” to include translating findings from clinical research into daily, routine clinical care in all practice settings.50,52
Fourth, an explicit focus on equity and quality should be included in considerations of the potential clinical advances generated by the new tools and techniques of genomics. The implications of therapy in the genome era was addressed in a recent conference hosted by NIH and are being considered by the Trans-NIH Sickle Cell Disease Therapies Working Group representing staff from 8 NIH institutes.8
These recommendations are relevant to both federal and state governments, because both levels of government have a substantial financial interest in ensuring the diffusion of quality care. A recent analysis indicates that there are ∼75000 hospitalizations for SCD annually, resulting in direct costs of more than $475 million, two thirds of these costs are borne by government funded programs.53 This underestimates the total health care costs of SCD, because it does not include emergency department visits or other ambulatory care. The uniform provision of excellent care should reduce costs by substantially lowering the complications that result in emergency department visits and hospitalizations.54
The focus on federal support of SCD research and clinical care is warranted, although some private philanthropy has been extraordinarily effective in creating organizations that stimulate research, improve quality, and educate and support families. By its very nature, such philanthropic efforts have the potential to accentuate disparities based on income, race, or degree of public sympathy rather than based on more objective measures of need. Although greater philanthropic support for SCD would be highly desirable, it would be unrealistic to expect private organizations to completely fill the research and quality of care gap in SCD, because those affected by it are more likely to be economically disenfranchised because of their racial or ethnic minority status. Because private funding is not always linked to disease prevalence, government has a legitimate role in balancing private efforts with its own funding and priority setting based on agreed-on measures of the overall burden of different diseases.55
It is tragic and unjust for a particular group of patients to suffer avoidable complications and even death because effective new therapies have not been uniformly implemented. Although this is not unique to SCD, the severity of the disease and the nature of who suffers from it make the impact of this failure both severe and disparate. It is shortsighted to continue to invest in producing new knowledge without making a similarly robust commitment to ensuring the universal and equitable diffusion of this knowledge so that all patients will reap the full benefit of our investments in research. In the wake of the signing of the Sickle Cell Treatment Act, now is the time to focus on equity and quality in SCD care to demonstrate unequivocally our ability to provide the best health care regardless of the specific disease or ethnic group affected.
Dr Oyeku was supported by grant T32 HP10018-08 from the Health Resources and Services Administration, Department of Health and Human Services, to Harvard Pediatric Health Services Research Fellowship Program, Children’s Hospital Boston, at the time of the submission of the article.
We thank Michael Silverstein, MD, Paul Wise, MD, MPH, Lee Pachter, DO, and Sharon Muret-Wagstaff, PhD, MPA, for their helpful review of the article and Sarah Reich, BA, and Jennifer Kreslake, MPH, for their assistance in preparing the article.
- Accepted October 17, 2005.
- Address correspondence to Lauren A. Smith, MD, MPH, Department of Pediatrics, Boston Medical Center, 91 E Concord St, Maternity Building, 4th Floor, Boston, MA 02118. E-mail:
The authors have indicated they have no financial relationships relevant to this article to disclose.
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