RHD Beat

Welcome to this first edition of RHD Beat,

The beat follows on from the tremendous work of RHD News, which was generously collated by the World Heart Federation for many years and a vital link between the RHD community worldwide. In its new incarnation we envisage that RHD Beat will continue to grow and expand to new audiences, new content and increased interaction. 

We look forward to keeping in touch, 

Partners of the RHD Action Alliance

Events & announcements

Launch of RHD Action Alliance

Medtronic Philanthropy, RhEACH and the World Heart Federation (WHF) announce the formation of RHD Action Alliance, a coalition of global partners united to end rheumatic heart disease.

Launched in September 2014, at an event in New York hosted by United Nations' Secretary General Ban Ki-moon while celebrating the success of Every Woman Every Child, this five-year, $6 million (USD) Medtronic Philanthropy commitment will support a global movement to end premature mortality resulting from rheumatic fever (RF) and rheumatic heart disease (RHD). WHF will serve as the Global Policy Partner, leading efforts to influence and inform policy decisions related to RHD. RhEACH will serve as a Global Technical Partner and scientific hub, leading clinical and public health strategies to control RHD. Both organizations will provide policy and technical assistance to all countries where RHD is prevalent. Medtronic Philanthropy will lead the engagement of the private sector in the RHD dialogue. Over the next five years, funding at country levels will support efforts to integrate RHD interventions into primary care facilities, while leveraging existing efforts focused on maternal and newborn care and HIV. Uganda and Tanzania are two country programs that have been funded under this umbrella. All interventions will be implemented with the goal of strengthening the entire health system, including the training of community healthcare workers who will be the link between patients and providers.

Medtronic Philanthropy hopes that RHD Action Alliance will spark an enduring global movement among the RHD community that will go far beyond the scope of this five year commitment.

Lancefield International Symposium

The XIX Lancefield Symposium on Streptococci and Streptococcal Diseases was held in Buenos Aires, Argentina from 9-12 November 2014. The event featured a broad array of content on RF and RHD including genomics, pathogenesis and progress towards a group A streptococcal infection. A detailed book of abstracts is freely available for download as a pdf.

World Heart Federation statement to the WHO Executive Board

In January 2015 representatives from the World Heart Federation made an intervention at the 136th Executive Board of the World Heart Federation. In response to agenda item 7.3 on Adolescent Health, the World Heart Federation tabled a powerfully worded statement:

“Rheumatic heart disease (RHD) starts in childhood and, if not systematically controlled through basic primary care, progresses into adolescence. Having been almost eliminated in populations with acceptable living conditions and primary health care, rheumatic heart disease continues to kill and disable adolescents from the world’s poorest, most marginalized populations. A preventable disease, it signals a stark denial of the right to the highest attainable standard of health.” Read the full statement here.

Dr. Alaa El Ghamrawy wins WHO award

In January at the WHO Executive Board meeting, Dr. Alaa Elghamrawy was awarded the WHO 2015 State of Kuwait Prize for Research in Health Promotion for his work establishing Egypt’s Rheumatic Heart Disease program. In 2003, Dr El Ghamrawy noted that over 60% of the total heart operations in Al Mahalla Hospital Cardiac Centre, where he was working, could be attributed to rheumatic heart disease. He worked to establish a small-scale initiative for the early detection and appropriate treatment and prevention of rheumatic heart disease, complemented by community awareness and health worker training. Supported by the WHO country office and civil society groups, the program expanded and in September 2014 the Ministry of Health launched a national program.  The award is $20,000. bit.ly/1z0nSTx

3rd All Africa Workshop on rheumatic fever & rheumatic heart disease

Working with PASCAR, World Health Organization, the African Union Commission (AU) hosted a two-day workshop on 21 and 22 February 2015 in Addis Ababa, Ethiopia. The purpose of the workshop was to assemble experts from across Africa and the world to chart the path for ‘A Roadmap towards the Eradication of Rheumatic Heart Disease in Africa’ The objectives of the meeting were to: Quantify the burden of RHD in AU Member States; develop a roadmap to indicate key actions and enhanced investments that are needed to eradicate RHD in AU Member States; engage key stakeholders and establish effective collaborations among the health care sector and other sectors that address the social determinants of health, NCDs, and access to care towards implementation of the roadmap under the leadership of Ministries of Health in AU Member States.

More information and presentations on country experiences from New Zealand, Tunisia and Australia, as well as discussion points: bit.ly/1D14h9w

Recommendations from the meeting will be presented at the AU Health Ministers’ meeting in mid-April. The meeting was funded by Novartis.

Uganda research focused on qualitative aspects of BPG

The work of Case Western Reserve University and colleagues in Uganda continues to progress RHD control in the country, in part by leveraging existing HIV/AIDS infrastructure. In particular, the expansion of register-based control programs in Mbarara and Gulu has increased access to care and been supplemented by community awareness programs. In these communities, training of health care workers at all levels has been a priority. Echocardiography screening of children in Kampala and Mbarara has further quantified the burden of disease and provided an important transition to clinical service delivery. Important qualitative work to understand factors influencing adherence to secondary prophylaxis with benzathine penicillin G was recently published in Global Heart, highlighting the importance of supportive families and health care providers. Barriers to adherence included limited resources to seek care, fear of injection pain, challenging communication with health staff and limited facilities able to deliver injections. To identify structural barriers to diagnosis, retention in care, and adherence to treatment, the partnership has adopted the cascade of care model from the HIV/AIDS community. The partnership will continue working to understand and tackle these barriers as more people are identified with RHD and enrolled in register based programs

Program implementation in Tanzania

"In Tanzania we are preparing for the implementation of a RHD prevention and control program. Discussions are underway with local assessment and implementing partners. We have had introductory meetings with the Ministry of Health and local government authorities. Along with Medtronic's portfolio lead, we have toured potential sites in which we could concentrate early efforts and tentatively chosen Sengerema district in the Lake Zone." ~ Dr Steve Justus, Touch Foundation

PASCAR / WHF Advocacy mini-grants

In late 2014, PASCAR and WHF awarded small grants for advocacy projects on RHD. These have funded:

Uganda: Uganda Heart-Research Foundation worked with Mulago Hospital, Uganda NCD Alliance, Uganda Media Association (UMA) and Uganda Initiative for Integrated Management of Non-Communicable Disease to organize a campaign to: 

• Develop a report on the burden of RHD in Uganda and dissemination of the report, REMEDY data and the Quick TIPS document and posters on primary prevention at the UMA conference (early November 2014).
• Form an RHD advisory committee (17 January 2015), and a media campaign. Events were covered by national television and print media. http://www.pascar.org/news/entry/rhd-advocacy-uganda

Mozambique: National Public Health Institute of Mozambique and the NCD Division of the Ministry of Health launched the first annual Rheumatic Heart Disease Day on December 15, 2014 at the Faculty of Medicine, University Eduardo Mondlane. Some 70 people attended the half-day event, including representatives from Ministries of Health, Education, and Science and Technology, as well as from various health institutes, NGOs and the Mozambican Heart Association. http://www.pascar.org/news/entry/mini-grants-for-rhd-advocacy

Sudan: Sudanese Heart Association and Sudanese Children Heart Society sponsored a workshop on  sore throat treatment with the Ear, Nose and Throat (ENT) specialists on 25 January 2015. Addressing a divergence between practice of ENT specialists and RHD advocates, the workshop aimed to stimulate development of joint recommendations for sore throat treatment. The workshop was attended by Dr. Bongani Mayosi of PASCAR, who presented on the Mosi-i-Tunya Declaration, and Dr. Alaa El Ghamrawy shared experience of management of sore throat in Egypt. The 21 participants represented the Ministry of Health, WHO, the RHD advisory committee and the Sudanese Pediatric Society, ENT specialists, and local NGOs.  They discussed problems with benzathine penicillin G quality and accessibility in Sudan, explored possibilities for integrating sore throat treatment into IMCI guidelines, committed to working with the Ministry to ensure training on RHD for all health personnel and provision of benzathine penicillin G free of charge; and proposed to develop collaboration between Yemen, Egypt and Sudan in RHD control. http://www.pascar.org/news/entry/rhd-advocacy-sudan

South Africa: The South African NCD Alliance worked with the national patient alliance, the Departments of Health, Education, the Stop Stockouts Program, Management Systems for Health and many other initiatives to advocate for inclusion of RHD prevention and treatment into NCD plans and budgets. Integrating RHD into a strategic mapping exercise to analyse the government’s response to NCDs, and advocacy around conclusions.  Mapping determined that sore throat treatment is integrated into treatment guidelines for primary care, developed an online system for reporting stockouts, and determined that there was a national stockout of BPG.  The project is developing plans for addressing issues identified.

Funding for the grants was provided by Bupa.

RHD community event – Broome, Western Australia

In December an RHD community advocacy event was held in Broome, in the Kimberley region of Western Australia. Rheumatic heart disease is still a major health problem in Aboriginal communities, with some communities recording the highest rates in the world. In Western Australia, two thirds of the state's 600 people living with RHD come from the Kimberley in the north of the state.

The event was an important opportunity to engage the local community and promote awareness of the disease and prevention. The event also featured a special screening of some footage from Moonshine films, the filmmakers behind Take Heart. Among the presenters were Professor Jonathan Carapetis (Director of Telethon Kids Institute), Ms Claire Boardman (the Deputy Director of RHD Australia) and Nelson Baker who shared his experience of living with acute rheumatic fever.

The event was made possible through the support of RHD Australia, Medicare Local, Kimberley Aboriginal Medical Services Council and the Government of Western Australia Department of Health.

ABC Kimberley | ABC News | Australian Indigenous HealthInfoNet

END RHD CRE | Australia

The National Health and Medical Research Council of Australia have recently awarded 5 years of funding for a Centre of Research Excellence to develop an ‘endgame’ for RHD in Australia. Known as the END RHD CRE, this program brings together 20 investigators, 16 institutions and a broad range of collaborators to identify the steps and interim targets needed to end RHD in Australia.

(L- R) Prof David Atkinson, Dr Stephanie Trust, Dr Thomas Snelling, A/Prof Andrew Steer, Dr Gavin Wheaton, Prof Alex Brown, Ms Claire Boardman

Led by Professor Jonathan Carapetis of the Telethon Kids Institute, the END RHD CRE provides an opportunity to unify the outcomes of existing research, support PhD students, explore novel approaches to disease control, engage people living with the disease and embed existing research outcomes in health systems. The END RHD CRE will function as a virtual center, providing opportunities for individuals and institutions throughout Australia to contribute through a single point of entry. RHDAustralia will continue their leadership as the Translation Partner of the END RHD CRE.

An investigator meeting was held in February and a formal launch of the centre is planned for the middle of 2015. Enquires about the END RHD CRE can be directed to END.RHD.CRE.SMB@telethonkids.org.au

In memoriam: Gene Stollerman

The global RHD community was saddened by the death of Professor Gene Stollerman in September 2014 at the age of 93. A pioneer in the management of RF and RHD, Professor Stollerman was involved in critical studies of secondary prophylaxis at New York City’s convalescent centre for RF, Irvington House. His important 1952 publication on a new repository form of penicillin, benzathine penicillin G, marked a turning point in understanding and delivering secondary prophylaxis for rheumatic fever. bit.ly/1A6IPLU

Resources

Manual | Train the trainer module

A training resource for health workers has recently been made available online. Developed as part of the Public Sector Linkages Program funded by the Australian Department of Foreign Affairs and Trade, the Training Manual outlines training steps for community health workers in the diagnosis and management of RF and RHD.

Video | Makulkul Mob - Wadeye

Red Dust Role Models partner with remote Indigenous communities to work with youth in a bid to ensure that improved health outcomes are perceived by and recognized in all Australians. Recently they visited Wadeye, in the Northern Territory with a healthy living theme focused on healthy hearts. In collaboration with the students, they produced a song and video highlighting healthy heart activities. The song also references the signs and symptoms that students should be aware of in relation to rheumatic fever and rheumatic heart disease. The video of the Makulkul Mob – Wadeye can be viewed online.

We are keen to hear about other RHD resources, including posters, information sheets and clinical tools as part of our planned global resource repository. Please send any examples to enquiries@rheach.org

RHD in the news

Nigeria: Heart Hope Club launched

The Heart Hope Club; a support and advocacy group for people affected by children’s heart disease was launched in Jos, Nigeria in November 2014. The event included testimonials from a young woman affected by RHD and the mother of a child with congenital disease, and a screening of the film Open Heart.

RHD campaign in Darfur, Sudan

The Ministry of Health in Darfur, with funding from the WHO Country office, has conducted a campaign to control RHD in Darfur. Piloted in the states of North and South Darfur in 2014, it was subsequently rolled out to all 5 states of Darfur. Activities included: training 100 physicians and 100 medical assistants in RHD prevention and management; journalist training; radio broadcasts; training of drama groups to deliver health messaging; awareness raising seminars for 1,250 people in 5 camps for the internally displaced; orientation of religious leaders, and training for community health promoters.

RHD register in Malaysia

February Heartbeat story on the RHD register established in Sabah state at Queen Elisabeth II Hospital. bit.ly/1FpExr6

Upcoming events

GFHM 2015 The 11th Global Forum on Humanitarian Medicine in Cardiology and Cardiac Surgery will be held in Geneva on June 24-27, 2015.  The WHF is planning to co-sponsor a session on RHD.

International Conference and Exhibition on Pediatric Cardiology, August 25–27 2015, Valencia, Spain.

World Society of Cardiothoracic Surgery, 19 – 22 September 2015, Edinburgh. A half day has been devoted to an RHD symposium with sessions on ‘surgical and medical care of the RHD patient’ and ‘Health systems approaches for the RHD patient’. Enquiries about the symposium can be directed to Professor Nigel Wilson (nigel.wilson@adhb.govt.nz)

Do you have meetings, events or activities coming up? We are compiling an online calendar and would love to include your plans! Please email details to: enquiries@rheach.org.au

Want even more RF and RHD updates? @RhEACHout is an active twitter feed with updates on events, publications and opportunities for RHD control. For information about wider CVD concerns, follow @worldheartfed for daily updates.

Research roundup

Each edition of RHD Beat will include an update on recently published articles on RF and RHD. A small number of studies will be highlighted in each edition. A comprehensive list of recent studies is available here. A summary of research highlights from 2014 is available here.