Author: Elizabeth Kohlway

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Washington, DC Advocacy Groups Commend National Governments for Committing to Reduce the Noncommunicable Disease Burden Worldwide

New York, NY (September 27, 2018) – Global Health Council (GHC) and the Noncommunicable Disease (NCD) Roundtable, welcomes today’s High-Level Meeting (HLM) on NCDs and commends governments for reaffirming their commitments to reducing the burdens of NCDs, including the long overdue commitment to address mental health, and the recognition that depression is the leading cause of disability worldwide. Ultimately, the value of this meeting will be demonstrated by the actions governments, donors, and civil society take to accelerate implementation.

“The burden of NCDs in low- and middle-income countries is growing, and it is critical that we stand with people living with NCDs to ensure they have access to necessary services and support,” stated Loyce Pace, Global Health Council President and Executive Director. “This convening offers an opportunity for countries to reaffirm their commitment to prevent and control NCDs, with a particular focus on affected communities with limited resources.”

GHC and the NCD Roundtable call for an emphasis on expanding coverage, to ensure that all people–including the poorest and most marginalized–benefit from prevention and are able to seek treatment and care. This will require greater multisectoral collaboration across public and private entities, as well as looking at other sectors, including technology and finance, to realize solutions. There must be clear targets and strong financial commitments to reach those implementation goals, requiring transparency and accountability from all stakeholders. This is not just a matter of principle; it is necessary to ensure sustainable economic development, as indirect and direct costs related to NCDs cripple productivity and threaten economies at all income levels.[i]

“This meeting is important because it will provide an opportunity for senior U.S. officials to join other leaders from around the world in recommitting to reducing the global burden of NCDs, which takes a toll on public health, on families and communities, and on economies,” stated Aaron Emmel, NCD Roundtable Co-Chair and Manager of Global Health Advocacy Initiatives at the American Academy of Pediatrics.

In addition to adopting the commitments stated in the Political Declaration, we urge governments to continue to work towards:

1.) Concrete global and national targets with mechanisms for accountability. Targets and action steps should be aligned as closely as possible with those emerging from the HLM on Tuberculosis, which took place on September 26. We believe there is still more work to do in this regard.

2.) Meaningful civil society engagement. We strongly support OP16 in the Political Declaration and believe governments, civil society (including patient and family advocacy groups, nonprofit organizations, academia, health professional associations, and faith-based organizations), and for-profit companies all have a stake in reducing the burden of NCDs.

3.) Adoption of a life-course approach. The support for a life-course approach is significant and must be supported in programs and funding. Although there are no age restrictions in the UN Sustainable Development Agenda’s target for NCDs, the World Health Organization’s attention to premature deaths from NCDs focuses solely on the 30-70 age range. This excludes millions of children, adolescents and young people who live with or are affected by NCDs, and many die prematurely or suffer long-term disabilities as a result. We will not be able to meet our global commitments, or sustain them, until this is corrected.

“Just as importantly, this is a call to action—to build up our health systems and turn those commitments into practical, sustained work on the ground that reaches the people who have been left out for so long,” said Emmel. “What’s significant about this meeting is that governments are agreeing to new approaches: to tackling mental health, to recognizing the importance of access to prevention and health services starting with children and across people’s lives, to listening to patients and making them partners in care, and to paying attention to the role of our environments on health. These insights all require a new way of working, and there’s a way for every sector of society to be involved, including with adequate budgets and strong political will from our governments.”

Addressing and incorporating these priorities are critical to reducing the number of NCD-related deaths and achieving universal health coverage, especially in low- and middle-income countries. GHC and the NCD Roundtable look forward to working together in continued collaboration with public and private entities to help people lead healthier, longer lives and reduce the toll NCDs take on our global economy.

[i] Council on Foreign Relations. The Emerging Global Health Crisis: Noncommunicable Diseases in Low-and Middle-Income Countries. New York: Council on Foreign Relations. 2014. Page 38.

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About the NCD Roundtable

The NCD Roundtable is a diverse coalition of over 60 organizations, including NGOs representing development and humanitarian settings, professional associations, academic institutions and companies, united to raise awareness and address the rising incidence of noncommunicable diseases (NCDs) in the developing world. Learn more at www.ncdroundtable.org.

About Global Health Council
Established in 1972, Global Health Council (GHC) is the leading membership organization supporting and connecting advocates, implementers, and stakeholders around global health priorities worldwide. GHC represents the collaborative voice of the community on key issues; we convene stakeholders around key priorities and actively engage with decision-makers to influence global health policy. Learn more at www.globalhealth.org.

 

Advocacy Update ~ September 24, 2018

This post was written by Victoria Rodriguez, Advocacy Associate, and Danielle Heiberg, Senior Manager, Policy & Advocacy.

Appropriations Update

FY 2019 and the end of the fiscal year

In the last few days of the fiscal year (FY), which ends on September 30, Congress is working to pass remaining FY 2019 spending bills packaged as “minibuses” – several spending bills packaged together.

The Senate passed a minibus that includes the Labor, Health and Human Services, and Education and the Defense spending bills (H.R. 6157), which contains funding for programs at NIH and CDC. The minibus is now in the House, with a vote expected this week. The minibus includes increases or sustained funding for global health programs.

NIH is funded at $39 billion (increase of $2 billion), and includes:

  • $78.1 million for the Fogarty International Center (increase of $2 million)
  • $5.5 billion for NIAID (increase of $263 million)

CDC is funded at $7.89 billion (increase of $127 million), and includes:

  • $488.6 million for the Center for Global Health (maintained from FY 2018), including an addition of $50 million for the Infectious Disease Rapid Response Reserve Fund
  • $620.3 million for Center for Emerging Zoonotic and Infectious Diseases (increase of $6 million)

The minibus also contains a Continuing Resolution (CR) that will fund the remaining appropriations bills, including the State and Foreign Operations bill, until December 7. Despite President Trump sending mixed signals on whether he will sign the minibus, House Republican Leadership believe they can avert a government shutdown.

GHC Meets with OMB to Discuss FY 2020

While Congress is in the midst of solidifying appropriations for FY 2019, Global Health Council and the global health community completed funding recommendations for FY 2020 for review by the Office of Management and Budget (OMB). Recently, GHC and a small group of GHC members met with OMB to provide the recommendations and to discuss the critical importance of continued commitment to cost-effective global health programs by the United States.

View GHC’s FY 2020 letter to OMB.

PEPFAR Reauthorization Introduced in the Senate

On September 18, Senators Bob Corker (R-TN) and Bob Menendez (D-NJ) introduced legislation to reauthorize PEPFAR (S.3476) through 2023. The Senate Foreign Relations Committee has placed the bill on the agenda of its next business meeting on Wednesday, September 26; the bill is expected to move quickly through the Senate. The text of the bill may be reviewed here once available to the public.

In late summer, Representatives Chris Smith (R-NJ) and Barbara Lee (D-CA) introduced similar legislation (H.R. 6651) in the House.

How I Became an Advocate for Families Affected by Congenital Heart Defects

By Hannah Almira Amora, Congenital Heart Defect Advocate & Former President of Let it Echo, Inc.

My Story

When my second son, Maven, was born in 2011, he was diagnosed with a congenital heart defect (CHD). His CHD included an atrial septal defect (ASD), a ventricular septal defect (VSD), pulmonary stenosis, and a right-sided aortic arch. Out of those conditions, we were informed that although his ASD and VSD may resolve on their own, his pulmonary stenosis would need to be corrected by surgery when he was older. And that correction would cost us around $20,000 USD – a significant amount for a young, working-class family living in Cebu City, Philippines.

When Maven was 4-months-old, he started developing deep blue skin, nails, and lips – symptoms that prompted us to revisit his cardiologist. These tet spells, which are caused by a lack of oxygen, indicated that he would need the surgery sooner – either when he turned one-year-old, or the latest, at age 2. However, two months later, another echocardiogram (his second since diagnosis) revealed that he had Tetralogy of Fallot or TOF since he developed a new defect, right ventricular hypertrophy, and consequently, he needed surgery as soon as possible.

Maven recovering from his surgery back in July 2012. Photo Credit: Hannah Almira Amora

As that reality set in, we began to prepare for the surgery. Based on our research, we needed to have 77% of our projected cost in hand in order for our son to be admitted for surgery. This amount doesn’t include the cost of flying our family to Manila, the country’s capital, where there were skilled surgeons who could address Maven’s case at his young age. To address this obstacle, we turned to our online friends and created a Facebook page, Maven’s Heart Fund, to see if we could raise sufficient funds. We also applied to a couple of foundations during this period; however, we were not considered poor enough (both my husband and I worked) to be qualified. Finally, we checked if our health care insurance would cover the surgery, but it would only cover 13% of the projected cost. As a result, we focused on our fundraising campaign. We were thankful enough to be blessed with a community who responded and supported us, and at the end of our 3-month campaign we had generated the amount we needed, and then some. 

 

Despite our family’s struggles, Maven was fortunate enough to get the care he needed. However, I recognize that not everyone can overcome the barriers we encountered. That is why, together with other CHD affected families we met during our fundraising campaign, we started Let it Echo, Inc., a community of warriors, survivors, and storytellers who provide hope and support to ailing CHD-stricken Filipino families through empowerment, education, and counseling.

13% of the projected cost. As a result, we focused on our fundraising campaign. We were thankful enough to be blessed with a community who responded and supported us, and at the end of our 3-month campaign we had generated the amount we needed, and then some. 

Speaking Up

Besides supporting each other as patient advocates, we need to collectively call upon policymakers and medical providers to do more to ensure that children and their families receive timely and quality care for CHD.

Below are my top three recommendations:

  1. Make CHD Treatment Broad and Inclusive: For the past five years of serving other CHD families, I have observed that the existing government programs for CHD patients are quite limited and exclusive. Limited because they only cater to children with certain conditions (specifically VSD and TOF), and exclusive because if a child has other congenital defects or if that child is beyond 10-years-old (for TOF correction) and 5-years-old (for VSD closure), he or she is ineligible for the program. As a result, these subgroups of children within the CHD community, along with those who have had previous surgeries and those who have RHD (and have similar problems and the same medical resources), are left to fend for themselves to get the essential surgery.

  2. Increase Access to Qualified CHD Medical Providers: During my son’s ordeal, I also observed that for a country with over 7,000 islands and 100 million people, only a handful private and government hospitals cater to pediatric cardiac surgery, and most of these providers are located within the country’s capital. As my family experienced, it is very expensive to travel to the capital and difficult to adjust to an unfamiliar setting without key family support present. Moreover, for emergency medical cases, there is inadequate transportation in place to move patients to the capital for more qualified help. I strongly urge the Philippine government to look into developing a transport system for medical emergencies for our archipelago of 7,000+ islands with limited CHD centers.

  3. Invest in CHD Health Workers and Research: Besides limited CHD health facilities, there is also a lack of qualified surgeons for a common birth defect. Perhaps this is a result of many healthcare workers – social workers, nurses and resident doctors – in the Philippines being overworked and underpaid. These dismal working conditions often lead to a lack of empathy of health care providers towards patients and families. Again, I urge the Philippine government to revisit its compensation packages of healthcare workers, encourage young medical students to venture further into pediatric cardiology, and invest in developing more centers of excellence that can treat pediatric cardiac cases. It is also important that medical providers and governments invest more in research and data gathering in order to get a better picture of the actual status of CHD (and RHD) patients and families and effectively match the right resources to the needs of patients.

Pushing Boundaries

At the end of September, I plan to attend the High-Level Meeting on Non-communicable Diseases (HLM on NCDs) taking place on the heels of the United Nations General Assembly at UN Headquarters in New York City. By participating in the HLM on NCDs as a civil society representative on Global Health Council’s delegation, I hope to learn best practices from other advocates in advancing the NCD agenda, network with individuals and organizations who can help me amplify our stories, and encourage more people to be part of a sustainable CHD ecosystem in the Philippines.

Hannah and Maven in June 2018. Photo Credit: Hannah Almira Amora

More than an Outbreak

This blog post was written by Global Health Council (GHC) President & Executive Director Loyce Pace

I had the privilege this month of traveling with members of U.S. Congress and other global health stakeholders to Sierra Leone as part of a CARE Learning Tour. Such trips are designed to expose policymakers, donors, the media, or other leaders to foreign assistance in action. Our visit was especially timely, considering Sierra Leone’s recent Ebola crisis and warnings about new infections in Democratic Republic of Congo. I arrived wondering what I would learn about Ebola’s aftermath and anxious to understand not only how a community or country responds to an outbreak but also how people recover.

Learning tour participants watch as local staff provide care and instruction to new and expecting mothers. Photo courtesy of CARE International

The direct effect of Ebola in Sierra Leone and its neighbor, Liberia, has been well-reported in terms of lives lost. But what came into focus for learning tour delegates during our time on the ground is the impact Ebola had on those left behind. Now that the 2014 crisis has come and gone, clinics have had to replenish resources and bolster systems that were strained under the weight of emergency response. It was inspiring to witness firsthand the resilience of health workers – many of whom lost coworkers to the disease – and see how village clinics have been able to rebound, with the support of local and international actors. This means a young pregnant woman seeking maternal care can once again access important services that would save her life. Or that a child could be treated for malaria, diarrhea, and other conditions that contribute to premature death. We forget these basic needs are at risk in a crisis.

A village savings and loan program in action. Photo courtesy of CARE International.

Beyond health, there are other important considerations following such a significant tragedy in Sierra Leone, a country with high poverty rates and a number of unfavorable human development indices. Learning tour delegates met Ebola survivors as well as widows or widowers and orphans to hear their profound accounts of fear, loss, and stigma and how they reestablished their lives after diagnosis. CARE’s flagship village savings and loan program has proven invaluable to these individuals, giving them the ability to restore capital and regain independence. Participants in local associations spoke of using funds to start businesses, pay school fees, and address family health care needs, bringing it all full circle.

So, as we think about global health security, it is critical that we view our investments and response as part of a continuum of global health and development, one that encompasses a range of priorities. After all, people are more than a disease. They have lives that require multiple resources and avenues of support. Only by acknowledging how their various needs are interconnected can we make lasting progress on the ecosystem of issues they face. I am grateful to CARE for helping me see beyond the Ebola outbreak to what the future holds for affected communities throughout Sierra Leone and beyond.

Loyce from the U.S. meets Loyce from Sierra Leone. Photo courtesy of CARE International

Global Health Council (GHC) Welcomes Legislation Extending PEPFAR

WASHINGTON, DC (August 9, 2018) – This week, Global Health Council welcomed the introduction of the President’s Emergency Plan for AIDS Relief (PEPFAR) Extension Act of 2018 on Friday, August 3 by the U.S. House of Representatives. The legislation, sponsored by Representatives Chris Smith (R-NJ), Barbara Lee (D-CA), Ileana Ros-Lehtinen (R-FL), Karen Bass (D-CA), Ed Royce (R-CA), and Eliot Engel (D-NY), reauthorizes PEPFAR for five years and reaffirms the bipartisan support and commitment to end the HIV/AIDS epidemic.

“We know that investments in global health work, and PEPFAR is a prime example of that,” stated Loyce Pace, President and Executive Director of Global Health Council. “Over the past 15 years, PEPFAR has had an impact on the lives of those living with HIV/AIDS, as well as building health systems to address malaria, TB, and maternal and child health. By renewing our commitment to this groundbreaking initiative, we emphasize its value and pave the way for even more global health progress worldwide.

Since its inception, PEPFAR has supported HIV treatments for more than 13.3 million people around the world, and has put us in reach of an AIDS-free generation with more than 2.2 million babies born HIV-free.

Global Health Council looks forward to working with policymakers and community stakeholders toward the goal of an AIDS-free generation.

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About Global Health Council

Established in 1972, Global Health Council (GHC) is the leading membership organization supporting and connecting advocates, implementers, and stakeholders around global health priorities worldwide. GHC represents the collaborative voice of the community on key issues; we convene stakeholders around key priorities and actively engage with decision-makers to influence global health policy. Learn more at www.globalhealth.org.

Media Contact

Elizabeth Kohlway
Senior Manager, External Affairs and Operations
Global Health Council
(703) 717-5251