Bridging the Treatment Gap for RHD in Sub-Saharan Africa: a Uganda—Case Western Reserve University Partnership Final Report Ma
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Bridging the Treatment Gap for RHD in Sub-Saharan Africa: A Uganda—Case Western Reserve University Partnership Final Report May, 2018 1 Dear Medtronic Philanthropy, On behalf of the entire RHD Action Uganda team, I would like to thank Medtronic Philanthropy for the visionary action you have taken to fight rheumatic heart disease (RHD) worldwide. Your tireless efforts have built a global movement that have now culminated in the passage of a World Health Assembly resolution on RHD and a renewed sense of optimism that it may finally be Time to Tackle RHD for the world’s poorest populations. We are proud that Uganda has played a foundational role in this effort. Here we present a final report describing the key accomplishments of the Uganda RHD control program during the 5-year Medtronic Foundation grant period (2013-2018). As the “Bridging the Treatment Gap for RHD in Sub-Saharan Africa” project as it was originally titled has evolved into what is now RHD Action-Uganda, our vision for what we could originally accomplish has expanded in ways we could not imagine. We hope you will agree that we have exceed our original goals, and, importantly, have established a sustainable way forward for the national RHD control program that is integrated into a national cardiovascular care development plan. Highlights of our accomplishments include: • Creation of a national network of Regional Centers of Excellence in RHD Care • Robust infrastructure for patient support and empowerment, including patient support groups and training for people living with RHD (PLWRHD) • One of the largest registries of PLWRHD in the world • Cutting edge epidemiologic research on the burden of latent and clinical RHD, acute rheumatic fever, and group A strep pharyngitis • High impact qualitative research with PLWRHD to identify priorities and barriers to care for penicillin prophylaxis, primary prevention of rheumatic fever, and maternal health. • Development of a new Treatment Cascade framework to measure care quality in Uganda and potentially other settings around the world • Echo screening of over 13,000 children for latent RHD • Advanced training in interventional cardiology for Uganda Heart Institute physicians who now independently perform percutaneous valvuloplasty for rheumatic mitral stenosis • A Uganda RHD Stakeholders Meeting in November 2017 which featured over 100 guests, international invitees from over 10 countries, and a day-long event for PLWRHD. Thank you again for your generous support of our program. The people of Uganda—particularly Ugandans living with RHD—will be forever grateful for the revolution in cardiovascular care that you have helped to spark. Sincerely, Chris T. Longenecker, MD; Project Director, RHD Action Uganda Director, Research & Innovation Center University Hospitals Harrington Heart & Vascular Institute Assistant Professor of Medicine; Case Western Reserve University School of Medicine 2 An Historical Perspective Since establishing the first programs in medical research and education in Uganda in the late 1980’s, Case Western Reserve University (CWRU) has contributed substantially to the Ugandan response to HIV/AIDS and tuberculosis. Together with CWRU and in-country partners such as Makerere University, the Joint Clinical Research Centre (JCRC), and others, the government of Uganda established a world-class infrastructure for HIV/AIDS that was seen as a model for others around the world. In the last decade, however, there has been increasing interest in developing cardiovascular care capacity in Uganda, along with other chronic non-communicable diseases such as cancer and diabetes. Makerere University was awarded the Medical Education Partnership Initiative Cardiovascular Linked Award (MEPI-CVD, R23 TW008861) in 2011 to help develop a cardiovascular workforce. CWRU and the Uganda Heart Institute (UHI) were natural partners in this effort. As part of the bilateral exchanges that resulted, it became clear that rheumatic heart disease (RHD) was a significant problem to be addressed and led to the proposal submitted to Medtronic Foundation in 2012. The overarching goal of the Medtronic Foundation proposal was to create a national RHD care infrastructure by leveraging existing HIV/AIDS resources. Key components of the proposal were to establish a regional center of excellence model, to make echocardiography available outside of Kampala, to remove barriers to benzathine penicillin G adherence, and to improve upon a nascent National RHD Registry. In the first pilot year of the grant, we were asked to make close partnerships with others in the RHD space and quickly engaged Drs. Andrea Beaton and Craig Sable from Children’s National Medical Center in Washington, DC. In the sections that follow, we will first describe our approach and secondly our deliverable outputs. Throughout, we will describe lessons learned for others that seek to jumpstart similar national RHD programs in the sub-Saharan African context. An abbreviated open-access version of this report was published this year in Global Heart[1] and is included in Appendix A. A Human-Centered Approach Our approach borrows heavily from human-centered design concepts; however, we did not formally adhere to published approaches. In general, we embraced four concepts which we will highlight in more detail • Collaboration • Human-centeredness (patients and providers) • Stakeholder engagement Collaboration Out CWRU team of adult cardiologists, infectious disease specialists, and nurse researcher had admittedly very little previous experience with RHD care or connection to the RHD research and advocacy community. From the outset, we viewed this as a strength, but needed to work collaboratively to establish working relationships with others. Within the first year of the grant (2013), the team conducted several calls with the Children’s National Medical Center team and agreed to collaborate on projects such as echo screening for latent RHD and provision of follow-up care for children found to have RHD. In 2014, Dr. Longenecker traveled to an RHD conference hosted by Medtronic Foundation in Fiji which was followed by the World Cardiology Congress. Here he established connections with the various Australia and New Zealand researchers such as Dr. Jonathan Carapetis, Dr. Rosemary Weber, and others. In 2015, the RHD 3 Action collaborative was launched, allowing more formal interaction with the World Heart Federation and the RhEACH (RHD Evidence-Advocacy-Communication-Hope) organization. In 2015 and on, Dr. Emmy Okello was able to establish connections with other African partners through the Pan African Society of Cardiology (PASCAR). A full listing of partners is displayed in Table 1. Table 1: Uganda and International Collaborators Engaged in the Development of a National RHD Control Program. Adapted from Longenecker et al.[1] Uganda International Children’s National Health System (Washington, Uganda Ministry of Health DC, USA) Federal University of Minas Gerais Uganda Heart Institute (Belo Horizonte, Brazil) World Heart Federation Joint Clinical Research Center (Geneva, Switzerland) RhEACH: Rheumatic Heart Disease Evidence- Makerere University Advocacy-Communication-Hope (Perth, Australia; Cape Town, South Africa) Pan-African Society of Cardiology Mbarara University of Sciences & Technology (Cape Town, South Africa) The Salam Centre for Cardiac Surgery Gulu University (Khartoum, Sudan) Imaging the World (Charlotte, VT, USA) An important lesson learned is the critical nature of within country partnerships when trying to leverage existing HIV infrastructure to deliver non-communicable disease care. The leaders of the Uganda partners (Table 1) had to be willing to share resources and to share credit/recognition in order for the project to succeed. It helped that leaders of the JCRC and UHI knew each other from medical training; however, they had never worked together before in a formal manner. Additionally, it was important for US partners to share credit and responsibility equally with Uganda partners. Some specific policies were developed such as the need to have all partner logos displayed on materials related to the project and to have equal representation on the manuscript oversight committee. Additionally, whenever the first author of a paper was Ugandan, the senior author was from the US and vice versa. Promoting Ugandan leaders in ways such as having them represent the project at international meetings helped to ensure the sustainability of the program. With growing collaboration, we were able to bring multiple sources of funding to the program to ensure the financial solvency of our efforts over the medium term. In particular, there has been close coordination of funding with the Children’s National Medical Center programs. For example, the Medtronic Foundation grant initially supported staff salaries in Gulu and funding for the pediatric support group activities (run by the salaried staff) was provided through Rotary International. In this sense, the Medtronic Foundation grant has been a catalyst for additional funding (Table 2). Our long-term strategy 4 has always been to engage the government to support the efforts of a National RHD control program; however, we realistically saw the value in establishing a broad base of funding to make sure these efforts had time to take root. We believe that a 5-year time frame is not realistic to establish a well-integrated RHD control program in a moderately sized low-income sub-Saharan African country with few healthcare resources; however,