podcast-icon-4753 Dr. Ted Love Global Blood Therapeutics

Axis Advocacy at Americans for Cures – Advocate Leadership Retreat

American’s for Cures sponsored Prop 71 to fund Stem Cell Research. Stem Cell Ambassadors programs is made up of representatives of different diseases and areas of California.  The summit focuses on various tactics of a grassroots organizing.


podcast-icon-4753 Proposition 71 12th Anniversary

Sickle Cell Disease Association of America announces new officers and updates on their recent convention

Sickle Cell Disease Association of America, Inc. Appoints New Additions to National Staff

[BALTIMORE, MD – October 27, 2016] The Sickle Cell Disease Association of America, Inc. (SCDAA) (www.sicklecelldisease.org), a not-for-profit organization dedicated to advocating for, and finding better programs and treatments for individuals living with Sickle Cell Disease and Sickle Cell Trait, announce the hiring of Grace Kolawole, CPA, as Controller, Ola Fajobi, MSPH, CPH, as Data Manager, and Lauren Whiteman, MPH, CPH, as Community Engagement Manager.

Grace Kolawole brings more than 15 years of experience to SCDAA. She has worked with numerous national nonprofit organizations as a Controller, Senior Accountant and Staff Accountant including the Christian Broadcasting Network, the America Federation of Government Employees and, most recently, the headquarters of the Concerned Black Men National office. Ms. Kolawole is a Certified Public Accountant with extensive federal grants management experience as well as notable expertise with GAAP and A-133 audit guidelines. In her leadership role, she will be responsible for daily management of SCDAA fiscal operations and related controls. Ms. Kolawole holds a B.S. from Frostburg State University and a B.A. from Howard University.

Ola Fajobi, MSPH, CPH, brings nearly a decade of experience in research from both Morgan State University and John Hopkins Bloomberg School of Public Health. As Data Manager, Mr. Fajobi will provide oversight of SCDAA’s data management efforts in support of National initiatives. He will also supervise the newly implemented SCDAA Data Center, recently established in the National Office. Mr. Fajobi holds a Master’s of Science in Public Health from Johns Hopkins Bloomberg School of Public Health and is currently pursuing his PhD in Public Health at Morgan State University. He holds a certificate in Health Emergencies in Large Populations (HELP) and Humanitarian Assistance.

Finally, SCDAA welcomes Lauren Whiteman, MPH, CPH, as the Community Engagement Manager. Ms. Whiteman brings more than ten years of experience to SCDAA and has worked with the Hispanic Serving Health Professionals/ Cancer Prevention and Control, The Memorial Regional Hospital and, most recently, John Hopkins School of Medicine. Ms. Whiteman has notable experience in developing health worker training curriculum’s as well as HRSA and RuSH grants. At SCDAA, she will work with Community Health Workers (CHW’s) under the HRSA Grant to engage with CHW’s and Community Based Organizations. Ms. Whiteman holds a Master’s of Public Health in Policy and Programs from the University of South Florida and is certified in Public Health.

About SCDAA:  The Sickle Cell Disease Association of America, Inc. (SCDAA) serves as the nation’s only organization working full time on a national level to resolve issues surrounding SCD and trait. Since 1971, the organization has been on the forefront of improving the quality of health, life and services for individuals, families and communities affected by Sickle Cell Disease and related conditions. In addition, SCDAA has been and remains instrumental in promoting the search for a cure for all people in the world with Sickle Cell Disease. SCDAA is a section 501(c)(3) organization.

For more information on how you can help, visit www.sicklecelldisease.org

Media Contact: Brittney Hayes, bhayes@sicklecelldisease.org, (410)528-1555

Sickle Cell Anemia: Stem Cell Gene Therapy – A Patient’s Perspective

Nancy Rene, a patient advocate for the Sickle Cell Foundation of California, spoke to the CIRM Governing Board at the “Spotlight on Disease Team Awards: Stem Cell Therapy for Sickle Cell Anemia” seminar. Through photos and stories, Rene described the impact of sickle cell anemia on her grandson’s life. She also spoke about the importance of support services for sickle cell patients and continued research for a cure. Rene was introduced by Bert Lubin, a CIRM Governing Board member and president of the Children’s Hospital and Research Center Oakland.

Sickle Cell Disease, a roadmap for getting to excellence everywhere

This article originally from ajpmonline.org

The U.S. has made enormous progress in the care of people with sickle cell disease (SCD) over the past 4 decades. Even in the absence of the discovery of new medications, median survival has increased dramatically from death typically occurring during early childhood in the 1970s to survival now in the mid-50s for individuals with hemoglobin SS and mid-60s for individuals with hemoglobin SC disease.1, 2 This progress has been made possible through universal newborn screening, the effective use of penicillin, and more recently of hydroxyurea, careful monitoring, and the provision of supportive care. Since the publication of the commentary “Sickle Cell Disease: A Question of Equity and Quality,” increased federal support for and attention to sickle cell programs have spurred clinical innovation and research initiatives as detailed in several papers in this supplement.3 Yet, as these papers also indicate, there is much further to go before all individuals with SCD consistently receive high-quality, equitable care.

Population-level data presented in this supplement indicate that only roughly one third of children were receiving appropriate monitoring with transcranial Doppler by age 2 years; one quarter of children at that age had not received pneumococcal vaccine.4 In another state, although increasing over time (consistent with increasingly strong data supporting its use in young childhood), rates of hydroxyurea use were less than 50%, varied across sites, and rarely covered much more than half a year.5 These are not indicators of a high-reliability system.

Yet, alongside these data conveying serious shortcomings in care are two beacons indicating what is possible. One report, from a community health center based intervention in Tennessee, notes that 98% of eligible patients were receiving hydroxyurea and that, correspondingly, rates of vaso-occlusive crises were half of published population norms.6 The other, a more detailed report of a quality improvement initiative, shows how through the careful, unglamorous work of constant improvement and innovation, testing and re-testing, the sickle cell program at Cincinnati Children’s Hospital Medical Center was able to improve its rate of transcranial Doppler screening at age 2 years from 25% to 100% and to maintain that high rate over a 20-month period.7

These reports indicate that with leadership, attention to detail, monitoring of performance, and a disciplined approach to continuous improvement, the health system can achieve highly reliable care for patients within its system and, correspondingly, achieve outstanding results. Such high levels of performance rebut any objection that says care is too complex or the patient population too demanding to achieve this type of result.

However, taken as a whole, the papers in this issue highlight that even when patients in some delivery systems get nearly perfect care, a critical challenge at the population level remains. This challenge is how to link patients to these types of high-performing systems and establish mechanisms to monitor at the population level whether or not patients and families are getting the care they need. Indeed, there is a close analogy between this challenge and that identified in studies of racial disparities in childhood cancer outcomes—children in high-performing cancer treatment systems may have few disparities, but across the entire population, minority or disadvantaged children have worse outcomes because they are less likely to be connected to such systems.8

The enormous effort several of the investigators needed to undertake to collect the required data for their reports is a credit to their initiative and the vision behind federal initiatives such as the Registries and Surveillance System for Hemoglobinopathies program. At the same time, these reports highlight how fragmented the “system” is or, more accurately, that there is no truly functional health system that identifies, links, monitors, and continuously improves care and outcomes for individuals and the population as a whole. There is not at the population level the same type of leadership, attention to detail, monitoring, and focus on continuous improvement that characterizes the programs within clinical care delivery systems.

The vision for what such a program should look like is quite clear and has been articulated by the Long-Term Follow-Up Sub-Committee of the Secretary’s Advisory Committee on Heritable Diseases of Newborns and Children. That subcommittee has noted in a series of reports that the purpose of any newborn screening program is to improve the survival and well-being of individuals with specific genetic conditions (e.g., SCD); that achieving this requires not only rapid and reliable diagnosis but also provision of evidence-based care, coordination, and integration of a full range of holistic services to meet child and family needs; and mechanisms for continuous monitoring, improvement, and innovation.9 Although some State public health agencies have made strides, progress is limited and variable.10

Numerous barriers impede achieving this population health vision, including lack of public health resources, limits in interoperability of data systems, prioritizing such relatively rare conditions, and lack of clear authority and leadership. Having such a system in place would not guarantee that the challenges that the data in this supplement and elsewhere convey, for example, the lack of providers with the knowledge, skills, and willingness to treat adults with SCD, would be addressed successfully. Nonetheless, such a system would make the shortcomings immediately apparent and provide a rallying cry and focus for addressing them. The expansion in health insurance, particularly in states that have expanded Medicaid should remove some of these latter barriers, as should the substantial expansion in Federally Qualified Community Health Centers. The emphasis of the Health Resources and Services Administration’s Sickle Cell Disease Treatment Demonstration Program on both establishing effective data systems and increasing access to skilled providers is another important contribution.

The reports in this issue demonstrate that true excellence in clinical care and outcomes can be achieved and that population data can be used to monitor quality for individuals with SCD. What is needed now is a concerted effort to have all providers perform at the level of the two sites highlighted here and to have public health systems monitor and continuously improve care and outcomes for patients with SCD as part of daily work so that none are left behind.


Publication of this article was supported by the Centers for Disease Control and Prevention.

No financial disclosures were reported by the authors of this paper.


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