On Wednesday September 25 2019, the NCD Synergies team at Partners In Health (PIH), the Program in Global NCDs and Social Change at Harvard Medical School (HMS), and the Helmsley Charitable Trust (HCT) convened a small group of stakeholders from across the global health community for an expert roundtable on “Prioritizing severe, chronic NCDs within strategies to achieve UHC”.
The event was held during the same week as the 74th
UN General Assembly in New York and included participants from 16 institutions,
including Global Health Council, Medtronic Philanthropy, World Diabetes
Foundation, Santé Diabète, T1 International, Children’s HeartLink, Resolve to
Save Lives, SickleInAfrica, MSF, CHAI, and the Stop TB Partnership.
Gene Bukhman / Harvard Medical School Maia Olsen (PIH) introduces the format of the expert roundtable prior to Gina Agiostratidou’s opening remarks from the Helmsley Charitable Trust.
Dr. Gina Agiostratidou, Director of the Type 1 Diabetes Program at HCT, welcomed participants, encouraging those in attendance to provide thoughtful feedback in how to build global momentum to secure better access to care for severe, chronic NCDs like type 1 diabetes to achieve UHC.
Dr. Gene Bukhman, Director of NCD Synergies and the Program in Global NCDs and Social Change at HMS, acknowledged that while strides towards achieving UHC demonstrate a positive paradigm shift, we, as a global community, have fallen short in establishing global financing commitments and in providing a roadmap for countries to equitably strengthen health care systems. To address this gap, PIH and HMS is collaborating with the Lancet Commission on Reframing NCDs and Injuries for the Poorest Billion, Ministries of Health, and national partners to conduct country-level analysis to identify and prioritize health services that will reach the poorest and most vulnerable. WHO and its partners in the African Region have also begun exploring a “PEN-Plus” strategy to decentralize and integrate longitudinal care for people with severe, chronic NCDs over the next decade.
Next, the expert roundtable focused on two sets of key questions:
What can we learn from successful multi-country initiatives across NCDs and other disease areas on evaluating and prioritizing scale and impact? Of the programs represented in the room, how did your institution decide program scale, population focus, and indicators for success?
Given the current NCD and UHC landscape, what are the challenges and opportunities for achieving greater support for scale-up of outpatient care for severe, chronic NCDs like type 1 diabetes, rheumatic and congenital heart disease, and sickle cell disease? What can we learn from the HIV and TB communities around building an advocacy and financing movement?
Participants had a lively and wide-ranging conversation throughout
the afternoon. Attendees discussed how their institutions have weighed program
decision-making to date – reflecting in particular on the balance between
prioritizing equity and reaching those in most need with evaluating
organizational risk in selecting settings with a minimum threshold of resource
availability, infrastructure, and political will. Many also stressed the
importance of adapting goals to a specific country or cultural context, as each
program within a multi-country initiative will look differently.
Questions then arose on maintaining quality long-term programming for patients in chronic care and how to successfully convince the donor community that interventions at 1st level hospitals fit within a primary care framework. Participants acknowledged the challenges around these issues but as Bent Lautrup-Nielsen from WDF stated, “Never has the global community had a better opportunity to do something meaningful in NCDs,” noting the strong platform WHO’s African Regional office and member states are providing for severe, chronic NCDs through review of a draft “PEN-Plus” strategy.
Maia Olsen / Partners In Health As the expert roundtable discussed opportunities to build advocacy and financing coalitions around severe NCDs like T1D, Phumlani Kango, a patient champion representing HIV and PrEP advocacy in South Africa, shares lessons learned from his work mobilizing young Africans living with HIV.
As the discussion transitioned to opportunities and challenges in building advocacy and financing momentum for packages of care like “PEN-Plus,” various participants reviewed lessons learned from other health movements. Phumlani Kango, a South African HIV and PrEP advocate, and Karlynn Holland, an advocate from T1 International, shared the successes they’ve found in mobilizing youth advocates living with HIV and type 1 diabetes – as both a way to show people they aren’t alone as well as to bring collective energy and advocacy to particular issues like #Insulin4All. Other participants, such as Prof. A.R. Kamuhabwa from Muhimbili University in Tanzania, stressed the importance of working with research institutions to generate compelling data to support policy brought before Ministries of Health and other national stakeholders.
The group ended with a discussion on how to better align UHC financing with packages like “PEN-Plus” that are cross-cutting and rooted in care delivery and management beyond a limited primary care approach. Participants like Dr. Bukhman, Dr. Kee Park from the Program in Global Surgery and Social Change at HMS, and Danielle Heiberg from Global Health Council left the group with a few final questions to consider:
To what degree can financing be led by patient voices and leverage the emotional tie-ins to lived experience as opposed to the donor community’s current understanding of UHC?
Given how vertically governments like the US approach bilateral funding within global health, is it possible to change the conversation and effectively talk about building strong health systems?
Our teams at PIH and HMS look forward to continuing to
explore these critical questions as we move forward in this new global era of
UHC.
Maia Olsen / Partners In Health Participants attending the “WHO PEN and Integrated Outpatient Care for Severe, Chronic NCDs at First Referral Hospitals in the African Region (PEN-Plus)” meeting in Kigali, Rwanda represented 17 member states, as well as WHO HQ, WHO AFRO, Partners In Health, Harvard Medical School, and various regional and disease-specific partners.
The regional consultationbrought together Ministries of Health and WHO Country Representatives from seventeen member states, including Benin, Botswana, Burkina Faso, Côte d’Ivoire, Eritrea, eSwatini, Ethiopia, Guinea, Kenya, Lesotho, Liberia, Malawi, Nigeria, Rwanda, Sierra Leone, Tanzania, and Uganda.
Partners In Health and Harvard Medical School supported the consultation, with PIH NCD and clinical leadership attending from Rwanda, Malawi, Liberia, Sierra Leone, Lesotho, Haiti and Boston. Colleagues also attended from the Clinton Health Access Initiative (CHAI), Pan-African Society of Cardiology (PASCAR), REACH, Rwanda Diabetes Association, the African Palliative Care Association (APCA), and the Global Sickle Cell Disease Network.
“Building on critical work that WHO/AFRO and member states have already begun, to define and promote essential packages of care for non-communicable diseases at primary care levels (PEN), the consultation will evaluate current progress in implementation of PEN and discuss a regional strategy for expanding access to high-quality care for severe, chronic NCDs (PEN-Plus).
“PEN-Plus” strategies provide an integrated platform at
first-referral level hospitals to address priority conditions such as type 1
diabetes (T1D), rheumatic heart disease (RHD), and sickle cell disease, as well
as palliative care for advanced malignancies and other conditions. “PEN-Plus”
approaches are also designed to complement PEN and offer an opportunity to
develop the leadership needed to train, supervise, and mentor implementation
and expansion of chronic care services for more common and less severe NCDs at
health centres.”
Maia Olsen / Partners In Health Dr. Paul Park (Partners In Health), Dr. Gene Bukhman and Dr. Chantelle Boudreaux (Harvard Medical School), and Dr. Prebo Barango (WHO/AFRO) present preliminary survey findings and a draft strategy for PEN-Plus, which was under review by member states and WHO country representatives attending the regional consultation.
In the first two days of the consultation, country representatives presented their progress in implementation of WHO PEN packages of essential NCD interventions at primary care level and discussed how best to address common challenges across the African region, including availability of funding, retention of trained health workers, data collection, and availability of essential medicines and equipment.
In the remaining half of the consultation, WHO AFRO, the NCD Synergies team at Partners In Health, and Harvard Medical School presented preliminary survey findings and a draft regional strategy for PEN-Plus, which emphasized the importance of an integrated model of care to address a set of severe conditions that are catastrophic especially in young populations and disproportionately impact the very poorest. Many severe and chronic NCDs such as type 1 diabetes, heart failure, and sickle cell disease require advanced management that can be delivered effectively by mid-level providers at first-level/district hospitals. PEN Plus can also accelerate progress on WHO PEN interventions at primary health center level – through improving care at district hospital level, countries can support scale up of primary care and put themselves on a strong pathway towards achieving universal health coverage.
Maia Olsen / Partners In Health Ministry of Health, WHO country representatives, and partner organizations from Kenya, Lesotho, and Rwanda, including Dr. Melino Ndayizigiye and Gedeon Ngoga from Partners In Health, review PEN-Plus documents on Day 4 of the consultation.
Presentations from the Rwanda Ministry of Health, Rwanda Biomedical Centre, Partners In Health/Inshuti Mu Buzima, Liberia Ministry of Health and Social Welfare, and Malawi Ministry of Health provided national examples of how to manage scale up of PEN-Plus services. Participants also had an informative dialogue on how mentorship and referral pathways between WHO PEN and PEN-Plus can work together at country level to strengthen a comprehensive delivery platform and address the full spectrum of NCD care to those that need it most.
In addition to targeted feedback to preliminary PEN-Plus strategy documents and supplemental material through a consultation framework, participants also had a chance to learn from site visits to three district hospitals near Kigali – Masaka, Nyamata, and Rutongo. Hearing directly from hospital directors and nurse leaders who have developed strong and well-functioning NCD clinics based on PEN-Plus principles to support patients with severe, complex NCDs in all regions across Rwanda was an inspiring way to move forward critical discussion throughout the week.
Since October 2017, WHO AFRO has been collaborating with the Program in Global NCDs and Social Change at Harvard Medical School (HMS) and the NCD Synergies project at Partners In Health (PIH) to support PEN Plus development. Much of this initial work has been based on the leadership of PIH clinical programs in Rwanda, Malawi, and elsewhere, as well as findings from National NCDI Poverty Commissions in various countries throughout the region. Experience from this work is available online through the Chronic Care Toolkit.
On Wednesday November 14, 2018 the Liberia NCDI Poverty Commission launched their report at a World Diabetes Day event at the headquarters of the Ministry of Health and Social Welfare in Monrovia.
Partners In Health Liberia Representatives of the Ministry of Health and Social Welfare, PIH Liberia and NCD Synergies gather at the Liberia NCDI Poverty Commission Report Launch held on World Diabetes Day, 2018.
The event commenced with a public parade from a local stadium to the MOHSW. Over 150 people were in attendance including partners from WHO, Lions Club, Patient advocates, civil society organizations, hospital clinicians, private sector companies and local media as well as key leadership from the Ministry of Health, including Honorable Minister Dr. Wilhelmina Jallah.
The launch was opened by the Assistant Minister of Preventive Services, Mrs. Joyce Sherman, with report findings shared by Dr. Fred Amegashie – co-chair of the Liberia NCDI Poverty Commission and NCD Director at MOHSW presented the key findings of the report to those in attendance. In addition, remarks were made by Dr. Patrick Ulysse, Executive Director of Partners In Health Liberia, Dr. Gene Bukhman, NCD Synergies Director and Global Lancet NCDI Poverty Commission Co-Chair, Dr. Neil Gupta, NCD Synergies Policy Director and Dr. Mesfin Zeblo, WHO Country Representative for Liberia.
PIH Liberia The PIH Liberia team and representatives from the Liberia NCDI Poverty Commission with Dr. Fred Amegashie, Co-Chair of the Liberia NCDI Poverty Commission and Director of NCDs for the MOHSW, and Mrs. Joyce Sherman, Assistant Minister of Preventive Services.
The full findings of these analyses, along with an extensive set of national recommendations for service prioritization can be found in the Liberia Commission Report. The Report is available to download here.
World Diabetes Day Celebration – Harper, Maryland County, Liberia
On the morning of World Diabetes Day, the PIH NCD team in Liberia led a parade from the PIH office in Harper to JJ Dossen Hospital led by NCD Physician Assistant Cyrus Randolph and 35 community health workers. On the way, Cyrus and his team held a short educational performance in the marketplace. Once they arrived at JJ Dossen, the group also held a short presentation for staff and patients at the hospital.
Simultaneously, the PIH NCD team co-hosted a diabetes-screening campaign with Tubman University, one of two public universities in Liberia. Along with the nursing and public health programs, the group gave presentations on diabetes to raise awareness among students, shared fliers among participants, and participated in a promotional program over the TU radio station.
Solidarity on World Diabetes Day
On November 14, 2018, we stand alongside the rest of the global health community in acknowledging World Diabetes Day. In communities living in and affected by extreme poverty, type 1 diabetes, in particular, is a significant part of the burden of severe, complex NCDs that many of our youngest patients — such as Sheila Chipengeand Aldophmy Josephfrom rural Malawi and Haiti — and their families face.
On World Diabetes Day, we celebrate our colleagues, peers, and friends who live with, treat, and manage these conditions across Partners In Health sites, and recommit our work in the pursuit of universal access to care for diabetes inclusive of the world’s poorest.
Partners In Health, through the NCD Synergies program and a collaboration with the Program on Global NCDs and Social Change at Harvard Medical School and the Division of Global Health Equity at Brigham & Women’s Hospital, has been working on an innovative strategy to expand type 1 diabetes care in constrained health systems across Rwanda, Malawi, Liberia, and Haiti. NCD teams in these countries are working within their communities to raise awareness and expand access to care for severe NCDs such as type 1 diabetes across an integrated NCD platform.
On Wednesday October 24th 2018, Partners In Health hosted a one-day side meeting “Health Systems and Delivery Strategies to Achieve Universal Health Coverage,”on the sidelines of the Global Conference on Primary Health Carein Astana, Kazakhstan which was held later in the week in honor of the 40th Anniversary of the Declaration of Alma-Ata.
At this ambitious and wide-ranging meeting covering a number of topics related to the delivery of universal health coverage (UHC), PIH looked to push the global conversation around UHC to better focus on pathways to expand quality care delivery. The discussion, at various points, delved into how to best encourage donors and support governments to invest in health systems strengthening across all levels of the health system, rather than only committing to a more minimal primary care package.
Askar Yedilbayev / Partners In Health Dr. Gene Bukhman discusses the challenges of funding an NCDI Poverty agenda in a high-level plenary session on health financing, which also featured Dr. Joia Mukherjee (moderator), Dr. Mariam Claeson from the World Bank, Dr. Marijike Wijnroks from the Global Fund, and Dr. Angela Kichaga from the Financing Alliance for Health.
On behalf of the NCD Synergies team and the Program on Global NCDs and Social Change at Harvard Medical School, Dr. Gene Bukhman presented twice in the meeting. During a high-level plenary session on “Health Financing: Success Stories and Strategies for the Way Forward on Achieving SDG3”, Dr. Bukhman followed presentations from the World Bank’s Dr. Mariam Claeson, Director of the Global Financing Facility (GFF), and Dr. Marijike Wijnroks, Chief of Staff at the Global Fund, by presenting gaps in financing for NCDs and injuries among the very poorest and posing critical questions around how best to integrate NCDI conditions into existing financing mechanisms like the Global Financing Facility.
Maia Olsen / Partners In Health Dr. Reginald Fils-Aime from PIH Haiti discusses the importance of including mental health within UHC strategies on a panel with NCD Synergies director Dr. Gene Bukhman and Dr. Isabelle Citron from the Program on Global Surgery and Social Change at Harvard Medical School, moderated by Dr. Joel Mubiligi, Executive Director of PIH Rwanda.
Later in the day, Dr. Bukhman was part of a breakout session panel moderated by Dr. Joel Mubiligi on “Integrating NCDs and Mental Health into Comprehensive Healthcare Delivery”, alongside Dr. Reginald Fils-Aime, a mental health specialist from PIH/Zanmi Lasante in Haiti, and Dr. Isabelle Citron from the Program on Global Surgery and Social Change at Harvard Medical School. All three panelists made strong calls to action around ensuring that it is well understood within the global community that NCDs, injuries, mental health, and the full spectrum of surgically-amenable conditions need to be a well-integrated part of efforts to achieve UHC, well beyond primary care.
In Dr. Bukhman’s comments, he also emphasized leading priority-setting efforts with severity and equity and that the work of integrated care teams at 1st level hospitals will be essential to achieving an expansion of care for NCDs and injuries among poorest populations. Dr. Fils-Aime and Dr. Citron concluded the session powerfully by emphasizing that like NCDs, interventions within mental health and surgery can also address significant gaps in the disease burden and results in care delivery can be achieved even in settings with minimal resources.
Partners In Health Kazakhstan PIH colleagues visiting from Rwanda, Mexico, Haiti, Liberia, Sierra Leone, Navajo Nation, and a number of clinical programs meet with clinicians from the PIH Kazakhstan team and Astana City TB Dispensary during an October 2018 site visit in Astana, Kazakhstan.
Joel Mubiligi / Partners In Health At the invitation of the Astana City TB Dispensary, visiting teams from across Partners In Health’s global programs prepare to visit with patients undergoing treatment for multi-drug resistant tuberculosis during an October 2018 site visit in Astana, Kazakhstan.
Maia Olsen / Partners In Health Dr. Askar Yedilbayev and colleagues from the Astana City TB Dispensary present progress in TB care supported by the government of Kazakhstan and partners like PIH Kazakhstan to a delegation of visiting teams.
On Thursday 25th 2018, while some of our colleagues represented Partners In Health at the Global Conference on Primary Care, the NCD Synergies team was able to take part in site visits of the government of Kazakhstan’s multi-drug resistant tuberculosis efforts with our PIH Kazakhstan colleagues in Astana and Almaty. Getting a chance to better understand the progress that the government of Kazakhstan and our colleagues have exhibited over the last twenty years was an inspiring close to an enriching week – much can be learned from Kazakhstan’s leadership to support patients struggling with a challenging and neglected disease like MDR-TB.
On Thursday September 27th, Dr. Gene Bukhman and Maia Olsen represented Partners In Health and Harvard Medical School at the United Nations High-Level Meeting on NCDs during the 73rd session of the UN General Assembly, joining over 350 registered non-governmental stakeholders during the proceedings. PIH prepared a statement to be read by Dr. Bukhman, but was not selected to speak. The statement will be submitted to the UN directly.
Maia Olsen / Partners In Health Dr. Sania Nishtar, a panelist in the Multistakeholder panels during the UN High-Level Meeting on NCDs on Thursday September 27th made a statement, which included language on prioritizing the poorest billion as part of a UHC agenda grounded in human rights and equity.
Text of the full statement below:
Chairperson and distinguished delegates –
Partners In Health, supported by the Program in Global NCDs and Social Change at Harvard Medical School, urges the global health community to expand the NCD, injury, and universal health coverage agendas to be more relevant and inclusive for the poorest people in the world who are largely children and young and adults living in rural sub-Saharan Africa and South Asia.
We call on member states and the UN to recognize that among the world’s poorest billion people:
The four so-called major NCDs account for less than half of the NCD burden, and less than a quarter of the NCD burden among those under 40 years of age, who are 80 percent of the population.
More than 70% of the NCD burden is unexplained by the lifestyle risk factors targeted by current global monitoring frameworks and that these risk factors account for less than 10% of the burden among those under the age of 40.
We call on member states and the UN to commit to:
Support country-led priority-setting processes that include the voices of the poor and consider the full range of effective medical and surgical NCDI interventions, including those that address severe and neglected cardiovascular disease such as rheumatic and congenital heart disease, pediatric cancers, type 1 diabetes and other severe endocrine conditions, musculoskeletal disorders such as rheumatoid arthritis, acute and chronic kidney diseases, severe gastrointestinal conditions, sickle cell disease, congenital conditions such as club foot and cleft lip and palate, blindness and deafness, severe skin conditions, neurological disorders and mental illness, as well physical injuries such as burns and drowning.
Ensure that financing is not a barrier to the implementation of these interventions through integrated care teams delivering packages of related services at primary, secondary, and tertiary levels such as, for example, the “PEN-Plus” package for severe chronic NCDs at first-referral level hospitals.
Expand global NCD control targets to include those under the age of 30 and consider mortality and suffering from the full range of NCDs and injuries.
***
UN Member States provided statements on country-led NCD progress in two sessions throughout the day. During the main plenary session, this included 23 statements from Heads of State and Government (significantly less than initially expected) and 55 statements from Ministries of Health. During the concurrently held multisectoral panel, selected speakers and high-level member state representatives from Ministries of Health spoke during the four hours of proceedings. Unfortunately, very little speaking slots were given to civil society actors due to time constraints, a frustrating development given significant rhetoric in the lead-up to the UN HLM around meaningfully including civil society and people living with NCDs in policy discussions.
Like many others across the NCD community, our team will be looking next to the upcoming UN High-Level Meeting on Universal Health Coverage in September 2019 and the series of meetings and conferences that lead up to next year’s dialogue.
On Thursday, July 5th 2018, the NCD Synergies team joined hundreds of civil society advocates at the United Nations Interactive Hearing on the prevention and control of NCDs in New York. The UN hearing provided non-state actors an opportunity to formally participate in the lead up to the third UN High-Level Meeting on NCDs on September 27th 2018. The hearing featured four panelsrepresenting a diverse set of speakers across focus areas and geographies and an opportunity for participants to provide statements and questions from the floor throughout the day.
Dr. Agnes Binagwaho, leading PIH’s University of Global Health Equity (UGHE) and a global Lancet NCDI Poverty commissioner, and Dr. Mary Nyamongo, co-chair of the Kenya NCDI Poverty Commission were both featured panelists, speaking on topics around “Promotion of multisectoral partnerships” and “Political leadership and accountability.” Katie Dain of the NCD Alliance and a global NCDI Poverty commissioner also provided comments on behalf of the NCD Alliance and NCD civil society more broadly, featuring key messages that a number of civil society advocates, including PIH and HMS, have provided input into throughout June 2018.
PIH was invited to provide an intervention in the late morning session of the hearing, which our Program Manager Maia Olsen delivered on behalf of NCD Synergies and the Program on NCDs and Social Change at Harvard Medical School.
Text of the full statement below:
Chairperson and distinguished delegates –
Aaron Emmel / American Academy of Pediatrics Maia Olsen, Program Manager for NCD Synergies, provides an intervention on behalf of PIH, referencing her own experiences as someone living with NCDs and the need for the global community to accelerate progress in addressing inequities in access to care for NCDs and mental health, especially among the world’s poorest and hardest to reach.
Partners In Health, supported by Harvard Medical School, stands alongside our many colleagues advocating for NCDs as an essential part of UHC and the 2030 sustainable development agenda. We must also lead with a rights based approach, recognizing the global scale of the NCD, injury, and mental health burden and in particular, the needs of the world’s poorest and most vulnerable.
As a childhood cancer survivor [Hodgkin’s lymphoma] and person living with a severe and chronic immune disorder, I am acutely aware of the challenges people living with NCDs face in any setting. At the same time, my ability to access timely and effective care is in many ways a result of where I live and my socioeconomic status. Illness, death, and disability from NCDIs can be an economic catastrophe for the poor and near poor in low- and middle-income countries, and conditions of poverty increase risk for many NCDIs, while preventing patients from accessing quality care.
We must significantly accelerate progress in addressing these inequities. As we look towards the HLM in September, we ask member states to consider the following recommendations for the political declaration –
Preserve language promoting a life course approach to NCDIs, inclusive of the millions of children and young adults who do not currently fall within WHO’s definition of premature mortality from NCDs. We also ask for greater attention to gender equity, in order to better account for the gendered dimensions of the NCD burden.
Expand the document’s framing to include NCDI conditions and risk factors beyond the “4×4”. Much of the excess NCD burden among the poor can be explained by infectious and environmental risks and lack of treatment.
UHC and the SDGs will not be achieved unless we preserve and strengthen the focus on the equitable delivery of integrated NCDI care and prevention, emphasizing scale-up of interventions informed by country-led priority setting and reflective of the local disease burden. There are proven strategies that work, even in the poorest settings, and training and retention of health workers is paramount to capacity building at all levels of the health system.
Recognize that lowest-income countries do not have the resources to adequately address NCDIs. We must commit to catalytic donor support, innovative financing mechanisms, and increased technical assistance in order to address these gaps, and better position governments to progressively increase their share of health spending for NCDIs.
Ensure strong data and accountability mechanisms, disaggregated by age, gender, geography, and socioeconomic status in order to better address the NCDI burden inclusive of all populations.
Most importantly, we must more meaningfully include the voices of people living with NCDs, injuries, and mental illness, their families, caregivers, and local implementers, in every step of the policy process, particularly those in settings of extreme poverty who are often hardest to reach.
***
Unfortunately, there was not enough time for our team to include important points around the full spectrum of conditions that are not covered within current global frameworks such as acute kidney disease, epilepsy, and sickle cell disease (to name only a few), conditions which should be prioritized given how severely disabling or lethal these can be at young ages. We had also hoped to underscore the importance of investing in surgery, a critical component of service delivery for many NCDs and injuries.
Many other organizations were not provided the opportunity to speak at all, despite having prepared comments for the hearing – including groups representing cross-cutting issues around palliative care, access to medicines, and building data and research capacity, as well as patient advocacy groups from low- and middle-income countries.
The WHO Global Coordinating Mechanism will be providing written versions of statements submitted to the hearing for member states and non-state actors to review later this month. Formal negotiations on the UN HLM draft political declaration will resume on July 18th 2018.
During the week of Monday May 21st 2018, the NCD Synergies team and others at Partners In Health joined UN member states and civil society from across the world at the seventy-first World Health Assembly (WHA71) in Geneva, Switzerland, Dr. Tedros’ first WHA in his new role as Director General.
An overarching focus of the week was the Director General’s call for universal health coverage in the now endorsed Global Programme of Work (GPW) for the start of his tenure at WHO, from 2018-2023. In the GPW, members states endorsed the “Triple Billion” targets – 1 billion more people benefitting from universal health coverage, 1 billion more people better protected from health emergencies, and 1 billion more people enjoying better health and well-being.
Maia Olsen / Partners In Health Alastair White, Policy and Advocacy Officer at the World Heart Federation, presents a statement in support of the RHD Resolution on behalf of WHF and RHD Action, minutes before the Resolution was adopted by the WHO and UN member states on Friday May 25th.
These messages resonated throughout the week across all agenda items, including those related to noncommunicable diseases (NCDs). The discussion on NCDs was encouragingly robust, with over 100 member states and non-state actors formally commenting on the upcoming UN High-Level Meeting on NCDs alone. Much of the more contested dialogue centered around fiscal policies for prevention measures for tobacco, alcohol, and sugar, but many other issues were raised. For instance, in an AFRO regional statement submitted by Gabon and additionally through individual comments, many African countries like Ghana and Uganda emphasized the importance of addressing gaps in access to treatment, highlighting in particular the burden NCDs inflict on the poorest and most vulnerable.
For these populations – people living with NCDs in settings of extreme poverty – a monumental win happened towards the end of this year’s WHA. On Friday May 25th, the Resolution on Rheumatic Fever and Rheumatic Heart Disease was officially adopted by the Assembly,a result of years of hard work and leadership from the Government of New Zealand, over 20 sponsoring member states, and organizations such as the World Heart Federation and RhEACH.
The RHD Resolution calls on WHO and member states to:
Strengthen data collection and better address the root causes of rheumatic fever and RHD
Improve access to primary care, including timely, affordable, and reliable access to diagnostics and essential medicines
Meaningfully include people living with RHD at the center of RHD efforts and better prioritize children and young adults living with NCDs like RHD across the global health agenda
Lead a coordinated global effort to prevent and control RHD, as a cross-cutting issue critical to health systems strengthening across NCDs, maternal & child health, and other priority areas
Rheumatic heart disease is a condition intricately tied to poverty. RHD disproportionately impacts children and young adults, particularly among the world’s poorest. Like many other severe NCDs in settings of extreme poverty, RHD is a preventable and treatable condition of infectious origin, exacerbated by social risks such as poor housing, overcrowding, and lack of access to treatment. If left untreated, many people with RHD will die unless they receive cardiac surgery.
Amy McLaughlin / Partners In Health Dr. Bhagawan Koirala shares his experience providing cardiac surgery for people living with RHD in Nepal during an RHD Action event at WHA71, alongside Elizabeth Machila, from the Beat RHD program in Zambia.
The commitments in the RHD Resolution, if funded and prioritized appropriately, will go a long way towards a more equitable future for populations suffering from RHD. In addition to the recommendations in the Resolution, member states and civil society should also continue to advocate for expanded protocols and training to address gaps in management of RHD and other severe NCDs at first-level hospitals, as well as to address critical inequities in the availability of cardiac surgery.
***
Partners In Health, as part of the Global Health Council delegation, read a statement in support of the Resolution that afternoon. The NCD Synergies team was honored to read the words that had been written with, and on behalf of, PIH’s many colleagues and patients who have been personally affected by RHD over the years. But it is their stories and experiences that both expose the importance of addressing this critical and neglected issue and provide hope and a pathway forward to tackle RHD.
Dr. Emmanuel Rusingiza and Erneste Simpunga, for instance, demonstrate the challenges that patients face in getting access to life-saving care for severe conditions like RHD in poor, rural settings. Dr. Rusingiza is one of only a few pediatric cardiologists in Rwanda; he works tirelessly to connect children and young adults like Erneste to the care they need to survive – including cardiac surgery – which is possible through the support of organizations such as PIH and Team Heart.
As Dr. Rusingiza shared in the drafting process for the PIH statement on the RHD Resolution: “My voice will be a clinician’s voice advocating for my patients. We continue to be hopeless in helping young patients coming to us with very advanced RHD in settings where qualified personnel is still a paucity along with appropriate equipment to save these lives. This results in premature deaths. Investing in qualified human resources, focusing on decentralization of care and basic equipment like echocardiography is very needed in limited settings […] as infrastructure and trained personnel to run cardiac surgery services may take time.”
Maia Olsen / Partners In Health Erneste Simpunga, a medical student and advocate in Rwanda, shares his experiences living with RHD at the Global NCD Alliance Forum in Sharjah, UAE in December 2017.
After undergoing surgery in 2008 through Team Heart’s support, Erneste is doing well. He is in medical school at the University of Rwanda and is becoming a more vocal patient advocate, serving on the 2017 Advisory Committee for NCD Alliance’s “Our Views, Our Voices” initiative. He will be shadowing at Boston hospitals and working with the NCD Synergies team on advocacy and research this summer.
Wesly Marcena, another young man living with RHD in Haiti, has also surmounted enormous odds. He began getting very sick at age 14, including a debilitating cough and regular fevers. He wasn’t diagnosed with RHD until years later, at age 20. By this time, he was experiencing significant heart failure, finding it more difficult to walk and breathe as he got weaker and weaker. Knowing that he needed treatment, he researched his options and traveled a long way to Hôpital Universitaire de Mirebalais, a PIH-supported referral hospital in central Haiti. PIH helped connect Wesly to the Haiti Cardiac Alliance, who were eventually able to connect him to cardiac surgery services in the Cayman Islands. It has been a long road for Wesly, but he has been able to manage his condition well since receiving surgery in 2016.
Like Erneste, Wesly has become an advocate, speaking out on behalf of others living with RHD in Haiti. Wesly travelled to Geneva in October 2017 as a participant of an NCD Alliance patient advocacy forum and contributed to the final version of the Advocacy Agenda of People Living with NCDs. Wesly was an inspiring youth voice over the two day dialogue, stating: “I’m thankful and lucky to be here today. I want governments like mine in Haiti to hear these stories and do more.”
In a video produced by NCD Alliance and NCDFREE as part of the “Our Views, Our Voices” initiative, Wesly concludes: “I’m telling my story […] to help people understand the situation in Haiti, so that all people with cardiac problems can access treatment and have the same opportunities as me.”
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Partners In Health and the NCD Synergies team looks forward to working with WHO, UN member states, and leading organizations such as the World Heart Federation and RhEACH on addressing equitable access to care for RHD. Better prevention and control of severe NCDs such as RHD in settings of extreme poverty will allow for the opportunities that Dr. Rusingiza, Erneste, and Wesly envision for their countries.
For more information about Wesly and Erneste’s stories, check out profiles by RHD Action and Team Heart. More narratives sharing the experiences of people living with RHD can be found through our Voices of NCDI Poverty initiative.
Follow @RHDAction to stay up to date on progress towards implementing the RHD Resolution.
On February 4th each year – World Cancer Day – the international community comes together to recognize and raise awareness of the burden that cancer poses globally and to recommit to a call to action to better address the impact of cancer across all areas of the world. It is imperative that there is greater and more equitable access to cancer treatment and care in order to reduce premature death and suffering, especially among the world’s poorest and most vulnerable.
On this year’s World Cancer Day, we have the honor of sharing the experiences of four people living with cancer in rural Ethiopia and Nepal, whose stories remind us why addressing the global equity gap and “Treatment for All” is an ideal we should all strive to achieve:
Fortuna Messaye, 14
Fortuna is 14 years old, living with Acute Lymphoblastic Leukemia (ALL) in Addis Ababa, Ethiopia. When Fortuna first began to experience symptoms, she struggled to find an accurate diagnosis and care in her hometown. Thanks to support from the Mathios Wondu Cancer Society, Fortuna has been able to access chemotherapy and treatment. When she grows up, she hopes to be a doctor and take care of others in her community.
Babesh Tamang, 5, and his mother Muna
Babesh is 5 years old, living with stage 4 cancer in Kathmandu, Nepal. Babesh, along with his mother, Muna, moved to Kathmandu from eastern Nepal to seek treatment, as cancer care is not available in rural Nepal. Muna’s husband works abroad as a laborer and sends money home when he can; however, the family continues to face a growing burden of debt. In spite of these challenges, Muna continues to do everything she can to support her son and get him the care he needs.
Nigist Dageto, 35
Nigist lives in rural Ethiopia with her three children. When diagnosed with breast cancer, Nigist moved to Addis Ababa. Navigating her care while living in poverty has been challenging for Nigist as both a patient and caregiver for her family, especially as out-of-pocket expenses have continued to add up. The Mathios Wondu Cancer Society has supported her throughout her treatment, which has allowed her to access chemotherapy and surgical care over the last two years.
Wondu Bekele, community activist
Wondu is an incredible advocate for people living with cancer in Ethiopia. After losing a young son to Acute Lymphoblastic Leukemia (ALL), Wondu founded the Mathios Wondu Cancer Society in his son’s name. The aim of the organization is to provide care, treatment and social support to women, children, and other vulnerable patients in Ethiopia to ensure that they have access to equitable care.
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To learn more about advocacy around World Cancer Day and the “Treatment for All” campaign, please check out Union for International Cancer Control (UICC)’s campaign page and advocacy materials. To be a part of the conversation this week, follow @UICC, @ACSGlobal, @NCDSynergies, or other key players.
Voices of NCDI Poverty is a joint initiative of the NCD Synergies project at Partners In Healthand the Lancet Commission on Reframing NCDs and Injuries for the Poorest Billion (NCDI Poverty). Voices of NCDI Poverty is a platform that shares the stories and experiences of people living with NCDs in lower resource settings. These narratives demonstrate the vast inequity in accessing treatment, care and social support faced by patients – especially women and children – living in settings of extreme poverty.
Nancy Ferguson / Partners In Health Co-authors Jaime Miranda, center, and Gisela Robles, right, from Universidad Peruana Cayetano Heredia and Oxford Poverty and Human Development Initiative respectively, at the first Lancet NCDI Poverty meeting in London.
In this piece, co-authors investigate the burden of cardiovascular disease among the world’s poorest billion people. Through a review of existing data sources, including the 2013 Global Burden of Disease, facility-based CVD registries, verbal autopsy studies, and population-based risk factor surveys, co-authors provide evidence to suggest that –
In the world’s poorest countries, over one third of the burden of CVD and congenital heart anomalies occurs in people under age 30, compared to less than 3 percent in high-income countries;
Compared to high-income countries, substantially less of the CVD burden among the poorest billion is attributed to behavioral or metabolic risk factors; and
Environmental, infectious, and early life nutritional risk factors play a substantial role in the predominant CVD conditions of the poorest countries, such as rheumatic heart disease (RHD) and nonischemic and Chagas cardiomyopathies.
Given this analysis, the paper contends that while the current Global Monitoring Framework for the prevention and control of NCDs will help reduce premature CVD deaths among the world’s poorest populations, it is not sufficient. As a result, the co-authors conclude with the following call to action:
“We recommend a complementary strategy for the poorest populations that targets premature death at younger ages, addresses environmental and infectious risks, and introduces broader integrated health systems interventions, including cardiac surgery for congenital and rheumatic heart disease.”
Kwan et al., “Endemic Cardiovascular Diseases of the Poorest Billion”
Co-authors include a number of advisors and commissioners from the Lancet Commission on Reframing NCDs and Injuries in the Poorest Billion (NCDI Poverty), including Gene Kwan from Boston University School of Medicine and PIH, NCD Synergies director Gene Bukhman (NCDI Poverty co-chair, Harvard Medical School), Ana Mocumbi (NCDI Poverty co-chair), Majid Ezzati, Yogesh Jain, Bongani Mayosi, and Jaime Miranda. Investigators from Harvard T.H. Chan School of Public Health, Oxford Poverty and Human Development Initiative (OPHI), and Boston University School of Public Health were also a part of the collaboration.
The NCDI Poverty Commission will reconvene in Kigali, Rwanda, in late September 2016 for their second in-person meeting. Follow @NCDIpoverty on twitter to learn more about this work.
Today, February 4th, 2016, marks World Cancer Day.
This year’s theme – We can. I can.– speaks to how wecan, as patients, caregivers, survivors, advocates, clinicians, policymakers, and the wider community, collectively make an impact in the global response to cancer. It’s an inspiring call to action, as well as a chance to reflect on why addressing cancer and NCDs is so important, especially in low-resource settings.
Nancy Ferguson / Partners In Health Maia Olsen, in blue, with members of the NCD Synergies team and Harvard Medical School faculty at recent meetings in London.
For me, this year’s call to action is also an inspiring one for personal reasons. When I was 21, I found out I had cancer. It’s a story repeated around the world, in both rich and poor countries. But, my particular story has been deeply affected by where I live.
Fast forward a few years – I was, and am, fine. Hodgkin’s lymphoma is a very treatable cancer, I received fantastic care at a leading medical institution, I had access to health insurance and the medications needed for effective, relatively pain-free treatment, I had the agency and health literacy needed to advocate for myself throughout the treatment process, and I had a wonderful support network.
Many people diagnosed with cancer, especially those in low- and middle-income countries, do not share my story. Severe inequities exist globally. Cancer has an unpredictable and devastating impact on many families worldwide, and many patients do not have access to comprehensive cancer care or quality services simply because of where they live.
Cancer has often been seen in policy and advocacy circles as too challenging or expensive to treat in the world’s poorest settings. Yet, if unaddressed, cancer and non-communicable diseases will continue to inflict a substantial impact on the health and socioeconomic stability in sub-Saharan Africa and many other regions of the world.
Other movements in global health, such as HIV/AIDS, can provide lessons for the global cancer and the NCD community – both as a telling example of how inaction can fuel the costly spread of disease, but also as a model of success for ways to use policy and advocacy mechanisms to expand access to care in some of the poorest settings in the world. This is explored in depth in the recently published “Cancer in sub-Saharan Africa: The Need for New Paradigms in Global Health”, from The Frederick S. Pardee Center for the Study of the Longer-Range Future at Boston University.
There are many ways that all of us, as individuals, can follow the lead of strong advocacy movements across global health to mobilize on behalf of patients in need of cancer care in low-income countries. For more information about ways to get involved with global cancer efforts, please see American Cancer Society’s key messages and recommendations for World Cancer Day.
To learn more about Partners In Health’s commitment to extend access to cancer care in the populations which we serve, read PIH’s latest updates in Cancer and Chronic Diseases.
