4 October 2011

“The cost of penicillin for rheumatic heart disease is cheaper than bottled water in South Africa,” Dr. Kingsley K. Akinroye, President of the African Heart Network pointed out in his statement at the the roundtable 2 meeting at the UN High-level Meeting on NCDs. Held  on 19-20 September 2011, the High-Level Meeting was attended by 34 heads of state. Dr. Akinroye, of Nigeria, was one of the signatories of the Drakensberg Declaration that initiated the PanAfrican ASAP network working to eliminate rheumatic fever in our lifetime. View His speech at about 38 minutes >

Published by the PASCAR ASAP team “ Genetic Susceptibility to Acute Rheumatic Fever:  A Systematic Review and Meta-Analysis of Twin Studies” shows that 60% of the risk of developing rheumatic fever is influenced by genetic factors. The other 40% is explained by two additional factors that are essential to the development of the condition: streptococcal pharyngitis and conditions of poverty. This provides the opportunity to target preventive measures to the 5% of the population who carry the genetic risk factors, and justifies large scale genome wide studies to identify the specific genetic factors that increase the risk of development of rheumatic fever, says Mark Engel, one of the authors of the article.

In July, World Heart Federation formed its new Working Group on Rheumatic Heart Disease, led by Professor Bongani Mayosi of the University of Cape Town, coordinated by Dr. Kathryn Taubert, Senior Science Officer of the World Heart Federation and working under the World Heart Federation Scientific and Policy Initiatives Committee (SPIC), the Working Group comprises experts in RHD from around the world:

Dr. Azza Abul-Fadi          Egypt
Dr. Jonathan Carapetis, Australia
Dr. Hu Dayi                    China
Dr. Diana Lennon           New Zealand
Dr. Samuel Kingue         Cameroon
Dr. Alan Maisel               USA
Dr. Bongani Mayosi        South Africa   
Dr. Ana Mocumbi            Mozambique
Dr. Regina Müller            Brazil
Dr. Craig Sable               USA
Dr.  Tomas Sanabria       Venezuela
Dr.  Anita Saxena           India

Two new You Tube clips  and a Facebook page are helping raise awareness of RHD online.  Please spread them around and use them as much as possible or if you don’t have time, ask an idealistic teenage.

• Kat’s Story (4 min) Kat Colter is a young American woman who has RHD and contacted WHF through RHDnet to ask what she could do to help. She offered to make a YouTube clip about her experience with RHD….one which creates a stark contrast to the stories many of us know of children and young people with RHD in low-income settings.  She calls on others living with RHD to share their stories, as well: lets hope she has planted the seed of a patient advocacy network.  Many thanks to Kat for this initiative. There are 57 views as I write: lets get it to over 300 by October 15, and please encourage any patients you know to make their own.

• RHD: Forgotten but not Gone  (8min) Featuring RHD experts filmed at the Partners in Health conference, “Long Tail of Global Health Equity: Endemic non-communicable diseases of the Bottom Billion.”.  The clip features Drs. Jonathan Carapetis, Liesl Zühlke, Ana Mocumbi, Joseph Mucumbitsi and Srinath Reddy. We have still more footage and hope one day to have the funding to do something more extensive with it, but until then this is a great way  to give potential funders or other stakeholders a basic introduction to the challenges and human costs of RHD.   Thanks to Joanne Basford, her team at Figment Communications, Steve Marx and his filming team, PIH communications and of course all of the people (including those who did not make it into this cut) who shared their time and experience on film.  There are 62 views as I write: the goal is to get it to at least 300 by 15 October…please help!

• Fight Pediatric Rheumatic Heart Disease ASAP is a Facebook Cause page started by Kalo Canturbury, from Cape Town.

The Kenyan-Heart National Foundation's (KHNF) rheumatic heart disease (RHD) prevention program has received the 2011 Louise Lown Heart Hero Award. Organized by the  ProCor and the Lown Cardiovascular Research Foundation. The KHNF educates schoolchildren on recognizing the symptoms of strep throat - the cause of RHD - and to practice simple but key prevention measures. To date, the KHNF has educated nearly 11,000 schoolchildren. In addition to using schoolchildren as heart health advocates, the KHNF targets adults with their education programs. "I believe children are very good advocates…. they are not shy and once they know something it is very difficult for them to keep quiet. They are great messengers; they have a strong ability to influence others, like their parents," said Elizabeth Gatumia, Executive Director of the KHNF.  The community-based programme also works directly with adults, and in 2011 alone, trained over 500 teachers and 300 faith-based leaders on preventing many different non-communicable diseases.”The programme has been developed with support from the Danish Heart Foundation.

An article just published by Mabouri Diao, et al in Archives of Cardiovascular Disease reports on maternal and foetal outcomes for obstretric patients with RHD at a tertiary care center in Dakar.  A study reported in “Pregnancy  in Women with Heart Disease in Sub-Saharan Africa,”  found  that fully a third of mothers with rheumatic heart disease died around child birth, with 12% foetal mortality and 8% neonatal mortality….all the more frightening  when you consider that the group studied had access to advanced treatment that that access already represents a selection bias toward wealth, privilige and access to medical services. Illustrating the impact of RHD on two MDGs - maternal and child mortality, this study provides a great tool for advocacy to put RHD on the development agenda, and justifies both more study of RHD and pregnancy and more use of MCH services to address RHD.

Abstract: Pregnancy in women with heart disease in sub-Saharan Africa

On 2 July, 2011, the  Nepal Heart Foundation organized a national seminar on RF/RHD control in Nepal.  The seminar Supported by the Ministry of Health, the Heart Foundation has established a nationwide program of secondary prevention of RF/RHD . Established in 2006, the programme is being implemented in 32 hospitals around the country; each centre has a register. This year the programme plans to start a pilot project on primary prevention in a district near Kathmandu.  The seminar covered the topics of: RF/RHD prevalence in Nepal, the national RF/RHD program, and public awareness programs. It identified the need for guidelines and determined to develop them.  Dr. Prakash Regmi is director of the programme, estimates that there are 75,000 RHD patients in Nepal needing secondary prophylaxis.  The cost of secondary prevention for an affected child is approximately 6 US Dollars per year; surgical treatment of a damaged heart valve is about 3000 Dollars.

On World Heart Day 2011, the Heart Foundation of New Zealand launched a pre-election health manifesto that highlights ten key 'health hot spots' that are undermining New Zealand's collective national health. Called Stop the Heartbreak, the manifesto articulates the first national action plan that the  Heart Foundation has ever promoted. The plan designates eliminating rheumatic fever as one of the top three national priorities for improving heart health, along with tobacco control and ending promotion of unhealthy food to children. Professor Norman Sharpe, New Zealand Heart Foundation Medical Director, wrote in and editorial in the New Zealand Medical Journal:  “Broadly, rheumatic fever, which is strongly associated with other close contact infectious diseases, should be regarded as a key indicator of child health and how we value our children….Its persistence in New Zealand represents one aspect of our failure to achieve a fair society and health equity for Maori and Pacific peoples.” The editorial was carried in the journal edition that published a retrospective study by Gilbern et al of children admitted to Starship Hospital with acute rheumatic fever or rheumatic heart disease between 2007 and 2009. All but one of the 36 children studied were Maori or Pacific Islander.

Stop the Heartbreak manifesto >

Abstract, Gilbert, et al: “Early cardiac morbidity of rheumatic fever in children in New Zealand” >