November 24, 2014
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Sickle Cell News Round-Up

ATLANTA - Sickle Cell News for February 2011

Sickle Cell Day Unit at Feist-Weiller Cancer Center Provides Emergency Room Alternative at LSU Health Shreveport LA

http://www.feistweiller.org/index.php?src=gendocs&ref=Sickle_Cell_Unit&category=Patient_Care

A new three-bed day unit developed to care for sickle cell patients experiencing pain crises has been established at the Feist-Weiller Cancer Center (FWCC) outpatient building at LSU Health Shreveport and was formally dedicated Thursday, Jan. 20.

The eighth such facility in the country designed to provide sickle cell patients a dedicated unit as an Emergency Room alternative, the FWCC unit will be staffed Monday-Friday from 8 a.m. to 4:30 p.m. Nights, weekends and holidays patients in sickle cell crisis will go to the LSU Hospital Emergency Room for care.

Nebu Koshy, MD, Assistant Professor of Medicine, is medical director for the unit and Jennifer Angelo, MPAS, PA-C, is clinical coordinator.

Patients receiving care in dedicated sickle cell facilities like the one recently established at FWCC have been found to have better experiences and can often control the pain through day visits.

 

 

 

Torchbearer sheds light on sickle cell disease

http://www.emcalmontecarletonplace.ca/20110210/news/Torchbearer+sheds+light+on+sickle+cell+disease

Nothing could chill the spirit of Toronto police 13 Division Constable Ojo Tewogbade last Wednesday afternoon, not even the first major snowstorm of 2011.

On a mission, Tewogbade marched into Carleton Place on Feb. 2 with the Torch of Life. His goal is to bring awareness to a private member's bill - Bill C-605 - that was introduced in Parliament on Dec. 13 (2010) by Kirsty Duncan, Liberal MP (Member of Parliament) for Etobicoke North, and Gerard Kennedy, Liberal MP for Parkdale-High Park.

Bill C-605 is an act with respect to a comprehensive national strategy for sickle cell disease and thalassemic disorders.The bill calls on Canada's Minister of Health (Leona Aglukkaq) to commence discussions with the provincial and territorial health ministers to develop complete patient care and national standards for children and adults living with these inherited blood disorders. According to Tewogbade, Toronto General Hospital is the only facility in the province offering an adult comprehensive care program for these conditions.

 

HHS Announces $750 Million Investment in Prevention

 New health care law provides new funding to reduce tobacco use, obesity and heart disease, and build healthier communities 

Department of Health and Human Services Secretary Kathleen Sebelius today announced a $750 million investment in prevention and public health, funded through the Prevention and Public Health Fund created by the new health care law.  Building on $500 million in investments last year, these new dollars will help prevent tobacco use, obesity, heart disease, stroke, and cancer; increase immunizations; and empower individuals and communities with tools and resources for local prevention and health initiatives. 

"Prevention is something that can't just happen in a doctor's office.  If we are to address the big health issues of our time, from physical inactivity to poor nutrition to tobacco use, it needs to happen in local communities," said Sebelius.  "This investment is going to build on the prevention work already under way to help make sure that we are working effectively across the federal government as well as with private groups and state and local governments to help Americans live longer, healthier lives."The Prevention and Public Health Fund, part of the Affordable Care Act, is designed to expand and sustain the necessary capacity to prevent disease, detect it early, manage conditions before they become severe, and provide states and communities the resources they need to promote healthy living.  In FY2010, $500 million of the Prevention Fund was distributed to states and communities to boost prevention and public health efforts, improve health, enhance health care quality, and foster the next generation of primary health professionals.  Today, HHS posted new fact sheets detailing how that $500 million was allocated in every state. Those fact sheets are available at www.HealthCare.gov/news/factsheets/prevention02092011a.html

 This year, building on the initial investment, new funds are dedicated to expanding on four critical priorities:  

. Community Prevention ($298 million): These funds will be used to help promote health and wellness in local communities, including efforts to prevent and reduce tobacco use; improve nutrition and increase physical activity to prevent obesity; and coordinate and focus efforts to prevent chronic diseases like diabetes, heart disease, and cancer.

 . Clinical Prevention ($182 million): These funds will help improve access to preventive care, including increasing awareness of the new prevention benefits provided under the new health care law.  They will also help increase availability and use of immunizations, and help integrate behavioral health services into primary care settings.

. Public Health Infrastructure ($137 million): These funds will help state and local health departments meet 21st century challenges, including investments in information technology and training for the public health workforce to enable detection and response to infectious disease outbreaks and other health threats.

 . Research and Tracking ($133 million): These funds will help collect data to monitor the impact of the Affordable Care Act on the health of Americans and identify and disseminate evidence-based recommendations on important public health challenges.  

The Obama Administration recognizes the importance of a broad approach to addressing the health and well-being of our communities. Other initiatives put forth by the Obama Administration to promote prevention include:

 . The President's Childhood Obesity Task Force and the First Lady's Let's Move! initiative aimed at combating childhood obesity.

. The American Recovery and Reinvestment Act of 2009 that provides $1 billion for community-based initiatives, tobacco cessation activities, chronic disease reduction programs, and efforts to reduce healthcare-acquired infections.

. The Affordable Care Act's National Prevention, Health Promotion and Public Health Council, composed of senior government officials, charged with designing a National Prevention and Health Promotion Strategy.

 

For more information about the FY2011 Prevention and Public Health Fund investments, visit www.HealthCare.gov/news/factsheets/prevention02092011b.html.

 

 WISSH (Worldwide Initiative on Social Studies in Haemoglobinopathies)

A new inter-disciplinary group dedicated to the social study of sickle cell and thalassaemia has been formed. It is called WISSH (Worldwide Initiative on Social Studies in Haemoglobinopathies) and aims to advance social studies in the service of global sickle cell and thalassaemia communities. The group met at the R David Thomas Executive Conference Center at Duke University on Duke University on 19th February 2011. It has representatives from the USA, UK, Jamaica, Brazil, Ghana, Kenya and the Netherlands. As part of its commitment to engage researchers with the community, many WISSH members contributed to a conference organized by the North Carolina Sickle Cell Program at the Sheraton, Raleigh, North Carolina on 18th February 2011. As it develops over the coming months, WISSH hopes to share more news about its publications and its conferences. Contacts: Chair: Simon Dyson sdyson@dmu.ac.uk

 

Sickle Cell in Schools Resource

The research project on sickle cell in schools in the UK led by Professor Simon Dyson of De Montfort university is nearing completion .The research team have produced a leaflet to help schools develop suitable policies to support young people with sickle cell in schools. A copy of the leaflet is enclosed and/or is available at www.sicklecelleducation.com Any person or organization if  welcome to circulate, copy or place on a web-site as they wish.  

On the leaflet you may notice a particular symbol: This is something called Creative Commons. It basically means that unlike usual copyright (which aims to restrict usage or make people pay to use it) this can be freely copied and used, subject to two conditions: BY: the original author needs to be acknowledged: the leaflet is BY someone.SA: Share Alike: if someone adapts and reuses the leaflet they may only do so on the undertaking that they share the resulting new resource back with the global community on the same terms.

 In other words, should an organization group wish to adapt it (for example: to adapt it to the local context; to place a message from your organization on the leaflet and the organizations name and address onto it) then you could do so provided it is shared and free to be used by others. Please do let Professor Dyson and his team know if it proves useful to you and if so how you use it. Contact: sdyson@dmu.ac.uk  “

 

Healthcare 411,Website by AHRQ

AHRQ has created a very useful health information Web site called Healthcare 411, which is featured in both English and Spanish. Healthcare 411  is a multimedia “one-stop resource” site for health care provider and consumer organizations. It contains the very latest health care news and research findings via videos, articles, podcasts, program and more regarding a variety of topics including blood related disorders including sickle cell disease. I ask that you consider including a Healthcare411 link within your site to serve as an additional credible resource of information for visitors. 

Healthcare 411 Web site by visiting: http://www.healthcare411.ahrq.gov/.

 

 

Ghana/Brazil sign agreement for Sickle Cell Centre in Kumasi

http://www.ghananewsagency.org/s_health/r_25279/

Ghana and Brazil, on Wednesday, signed a Memorandum of Understanding (MOU) in Accra, to implement the Kumasi Blood and Sickle Cell Centre and Newborn Screening for Sickle Diseases Project.

    

The project, valued at 13.66 million dollars, will help curb the challenges confronted by the Centre in tackling sickle cell diseases, restoring more blood to save lives and screening for the diseases at the earliest stage of the lives of babies. It will include the construction of the Centre, provision of equipment and training of personnel. 

    

In Ghana, 13,000 babies are born annually with the disease whilst Brazil records 1,500-3000 annually.Sickle Cell is the most common serious genetic disease in many parts of the world, especially in Africa, and could be managed when detected early.

    

Alhaji Mohammed Mumuni, Minister of Foreign Affairs and Regional Integration, who signed for Ghana, said the projected was initiated by the Sickle Cell Foundation of Ghana, in collaboration with the Ministry of Health and foreign institutions and agencies, to help address problems faced by Ghanaians diagnosed with the disease. He acknowledged Brazil's effort in helping to reduce the effect of the disease as well as enhancing the lives of Ghanaians as a whole.

    

Alhaji Mumuni assured Brazil of Ghana's commitment to collaborate to ensure the fulfilment and sustainability of the project. Mr Luis Fernando Serra, Brazil's Ambassador to Ghana, who signed on behalf of his country, commended Ghana for dealing with the disease, which is one of the most critical diseases that demanded more attention.

    

 

Genetic Alliance Funds Innovation in Newborn Screening through Challenge Awards
Request for Proposals Released

WASHINGTON – January 27, 2011 – Genetic Alliance invites proposals for the Newborn Screening Clearinghouse (NBSC) Challenge Awards. Genetic Alliance will distribute several Awards up to $25,000 each for organizations to integrate the Clearinghouse into new or existing outreach, engagement, or educational efforts.

In 2009, Genetic Alliance received a five-year cooperative agreement from the Genetics Services Branch of the Maternal and Child Health Bureau, HRSA/HHS to develop the nation’s first clearinghouse of newborn screening (NBS) educational information. The Clearinghouse (http://www.nbsclearinghouse.org) increases knowledge and understanding of NBS for expectant and new parents, health professionals, industry representatives, and the public. The Clearinghouse is currently undergoing a redesign as BabysFirstTest.org for a more streamlined and customizable website user experience.

The NBSC Challenge Awards are an opportunity to build a bridge between the Clearinghouse and the existing programs, resources, and expertise in the newborn screening community. “All stakeholders are integral to the development of the Clearinghouse as a website, tool, and an initiative,” said Natasha Bonhomme, NBSC Project Director. “These awards will spur creativity and innovation, two qualities that have been part of the newborn screening community from the very beginning.”

Genetic Alliance will fund proposals that detail innovative six-month solutions to challenges in the newborn screening system. The full Request for Proposals is available on the Clearinghouse website at http://www.nbsclearinghouse.org. Proposals will be accepted until March 11, 2011. Genetic Alliance will consider proposals submitted from nonprofit organizations, public research institutions, and private-sector companies. A question and answer webinar will be held on February 10, 2011, from noon to 1:00 p.m. EST. Register online at http://www.geneticalliance.org/webinars.

For more information about Genetic Alliance’s newborn screening programs, visit http://www.geneticalliance.org/nbs.

New Book  Resource for Parents: Sickle Cell Anemia : A Mother's Perspective What Every Parent Should Know

Authored by Ms. Mercedes Lipscomb  Edited by Michael Chamberlin

Sickle Cell Anemia: A Mother's Perspective offers practical information from a parent who has raised a child with sickle cell disease. This is good information that every parent should be aware of. There are easy to understand descriptions of complications, treatments and tips on navigating the medical world.. The goal of this book is to share a firsthand account of some personal situations experienced when interacting with a school district and some medical professionals. For orders go to :
http://www.smashwords.com/books/view/37378  or https://www.createspace.com/3509281

 

Sickle Cell Research Articles

1.

Evaluation of the Psychological Problems in Children with Sickle Cell Anemia and Their Families.

 

Unal S, Toros F, Kütük MO, Uyanıker MG.

 

Pediatr Hematol Oncol. 2011 Feb 23. [Epub ahead of print]

 

PMID: 21345077 [PubMed - as supplied by publisher]

 

Related citations

 

2.

Extended red blood cell antigen matching for transfusions in sickle cell disease: a review of a 14-year experience from a single center.

 

Lasalle-Williams M, Nuss R, Le T, Cole L, Hassell K, Murphy JR, Ambruso DR.

 

Transfusion. 2011 Feb 18. doi: 10.1111/j.1537-2995.2010.03045.x. [Epub ahead of print]

 

PMID: 21332724 [PubMed - as supplied by publisher]

 

Related citations

 

3.

Hydroxyurea adherence and associated outcomes among Medicaid enrollees with sickle cell disease.

 

Candrilli SD, O'Brien SH, Ware RE, Nahata MC, Seiber EE, Balkrishnan R.

 

Am J Hematol. 2010 Dec 22. doi: 10.1002/ajh.21968. [Epub ahead of print]

 

PMID: 21328441 [PubMed - as supplied by publisher]

 

Related citations

 

4.

Improvements in haemolysis and indicators of erythrocyte survival do not correlate with acute vaso-occlusive crises in patients with sickle cell disease: a phase III randomized, placebo-controlled, double-blind study of the gardos channel blocker senicapoc (ICA-17043).

 

Ataga KI, Reid M, Ballas SK, Yasin Z, Bigelow C, James LS, Smith WR, Galacteros F, Kutlar A, Hull JH, Stocker JW; for the ICA-17043-10 Study Investigators.

 

Br J Haematol. 2011 Feb 17. doi: 10.1111/j.1365-2141.2010.08520.x. [Epub ahead of print]

 

PMID: 21323872 [PubMed - as supplied by publisher]

 

Related citations

 

5.

Religious coping and the use of prayer in children with sickle cell disease.

 

Cotton S, Grossoehme D, McGrady ME.

 

Pediatr Blood Cancer. 2011 Feb 11. doi: 10.1002/pbc.23038. [Epub ahead of print]

 

PMID: 21319290 [PubMed - as supplied by publisher]

 

Related citations

 

6.

Psychiatric Diagnosis in Adolescents With Sickle Cell Disease: A Preliminary Report.

 

Benton TD, Boyd R, Ifeagwu J, Feldtmose E, Smith-Whitley K.

 

Curr Psychiatry Rep. 2011 Feb 11. [Epub ahead of print]

 

PMID: 21312010 [PubMed - as supplied by publisher]

 

Related citations

 

7.

The rate of hemolysis in sickle cell disease correlates with the quantity of active von Willebrand factor in the plasma.

 

Chen J, Hobbs WE, Le J, Lenting PJ, de Groot PG, López JA.

 

Blood. 2011 Feb 7. [Epub ahead of print]

 

PMID: 21300978 [PubMed - as supplied by publisher]

 

Related citations

 

8.

Red cell exchange does not appear to increase the rate of allo- and auto-immunization in chronically transfused children with sickle cell disease.

 

Venkateswaran L, Teruya J, Bustillos C, Mahoney D Jr, Mueller BU.

 

Pediatr Blood Cancer. 2011 Feb 4. doi: 10.1002/pbc.22985. [Epub ahead of print]

 

PMID: 21298771 [PubMed - as supplied by publisher]

 

Related citations

 

9.

Leukocytosis is a risk factor for lung function deterioration in children with sickle cell disease.

 

Tassel C, Arnaud C, Kulpa M, Fleurence E, Kandem A, Madhi F, Bernaudin F, Delacourt C.

 

Respir Med. 2011 Feb 4. [Epub ahead of print]

 

PMID: 21295957 [PubMed - as supplied by publisher]

 

Related citations

 

10.

Increased Clearance of Morphine in Sickle Cell Disease: Implications for Pain Management.

 

Darbari DS, Neely M, van den Anker J, Rana S.

 

J Pain. 2011 Jan 28. [Epub ahead of print]

 

PMID: 21277838 [PubMed - as supplied by publisher]

 

Related citations

 

11.

Vitamin D deficiency and chronic pain in sickle cell disease.

 

Osunkwo I, Hodgman EI, Cherry K, Dampier C, Eckman J, Ziegler TR, Ofori-Acquah S, Tangpricha V.

 

Br J Haematol. 2011 Jan 31. doi: 10.1111/j.1365-2141.2010.08458.x. [Epub ahead of print] No abstract available.

 

PMID: 21275953 [PubMed - as supplied by publisher]

 

Related citations

 


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