Author: Elizabeth Kohlway

  • All
  • Advocacy Hub
  • Advocacy Update
  • Blog Posts
  • GHC Announcements
  • News Center
  • Statement
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.

GHC FY 2020 Letter to OMB [link to letter attached to email]

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.

***

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

Global Health Security: Take Action to ‘Close the Gaps’

This event summary on GHC’s WHA71 side event, Getting Local with Global Health Security: A Path Toward Sustainable Action, was written by GHC member and WHA delegate Jo Anne Bennett. 

Speakers at this opening-day session characterized the key to health security in terms of addressing health systems’ endemic problems: absent or insufficient frontline health workers, inefficient supply chains, and poor data systems. In other words, the foundation for preventing epidemics is a well-functioning health system ‘on the ground’ in communities.

A point repeatedly made was the need to get past identifying system weaknesses and take action to ‘close the gaps.’ A common theme was prioritization, specifically the challenge of prioritizing in the context of competing priorities and prioritizing according to available means. Rwanda’s health minister framed this challenge as stepwise moving toward Universal Health Coverage: focusing in communities ‘because that’s where problems are and that’s where solutions must be.’ Community action plans start with a large list of priorities that becomes shorter as actions are taken.

Former CDC Director Tom Frieden addresses a packed room for a WHA71 side event on global health security.

Tom Frieden, President and Chief Executive Officer of Resolve to Save Lives and former Director of the Centers for Disease Control and Prevention (CDC), explained how countries participating in the Global Health Security Agenda can use Joint External Evaluations (JEEs) to help clarify priorities related to core capacities. The few JEEs conducted thus far provide a good news/bad news story: The good news is that progress is possible: countries have improved along some criteria that have not been fully achieved. The bad news is that for some criteria no countries have progressed and some countries show no progress on any criteria. Frieden said the disappointing results called for analysis and action.

Keynote speaker Peter Sands, Executive Director of The Global Fund, took up the call for analysis of the underlying weaknesses. Smart investing, he said, rests on the “right analysis,” i.e., analysis that turns knowledge about gaps to costed action plans.  He provided the business case for investing in prevention rather than preparing for response. Using MERS and Zika as examples, he described how the staggering local and worldwide economic impacts of even relatively small epidemics reach far beyond the affected region(s).  Smart investing looks at activities that can achieve dual outcomes, not just emergency preparedness.  He pointed to the Global Fund as an example of recognizing the links across programmatic silos. Similarly, basic public health activities can be leveraged to strengthen core health security capacity.

Chief Executive Officer at Foundation for Innovative New Diagnostics (FIND) Catharina Boehme’s remarks lent further support to prioritizing prevention over response: the reality is that there is no quick scale-up for diagnostics and no diagnostics are available for six of the nine diseases prioritized by WHO.

Dr. Rüdiger Krech, Director of the Department of Ethics and Social Determinants of Health at the World Health Organization (WHO), reflected on the importance of country ownership and political will.  National leadership provides the system-wide view to ensure that all parts of the whole are being addressed. The JEEs simply expose weaknesses.  Everyone needs to understand the implications of just one case.