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Investing in TB Research: World Leaders Urged to Commit to End TB

This blog post was written by the Communications Team at the Global Alliance for TB Drug Development (TB Alliance). TB Alliance is dedicated to the discovery, development and delivery of better, faster-acting and affordable tuberculosis drugs that are available to those who need them. They are a 2018 Global Health Council Member.

A Lingering Epidemic

Tuberculosis (TB) is one of humanity’s oldest and most persistent plagues, dating back thousands of years. Despite being deemed a global health emergency in 1993, TB has since become the deadliest infectious disease in the world, killing more than 1.6 million people last year. Drug-resistant TB accounts for roughly a third of global deaths due to antimicrobial resistant infections and has tragically low survival rates, between 34% and 55% depending on how resistant the infection is to available drugs.

The absence of adequate tools – diagnostics, vaccines and drugs – to quickly and safely prevent and treat all forms of TB has allowed the pandemic to linger and spiral out of control.

                            Photo: One day of typical treatment for drug-resistant TB

Currently, treatment for drug-resistant TB is extremely complicated, expensive, and lengthy, involving a wide variety of medicines that can bring debilitating side-effects like deafness, include painful injectable drugs. These treatments are administered for nine months to two years or longer. Today, people with Multi Drug Resistant-TB (MDR-TB) often go untreated, and of those who do receive treatment only about half are cured. Innovation in TB treatment is urgently needed.

Investing in a New Generation of Cures

New drug combinations with the potential to more safely and rapidly cure all forms of TB are in late stages of development. If proven effective, transformative new cures could save millions of lives and help lift a heavy economic burden on people and governments alike. However, realizing these breakthroughs and reaching those in need is no small endeavor – true success will require a meaningful and sustained commitment to research and product development from all nations.

Breakthroughs on the Horizon

Last month,  TB Alliance announced the launch of the SimpliciTB trial, a pivotal clinical trial to determine whether the new BPaMZ drug regimen can treat TB and drug-resistant TB more quickly and effectively than currently-available treatments, reducing TB treatment by a third and MDR-TB treatment by as much as 18 months. With additional investments in research and development for new cures, we can further build out the evidence base for transformative new treatments and overcome the threat of TB.

It’s Time for World Leaders to Act

Major advances in TB treatment, prevention and diagnosis present game-changing new technologies that can save lives, keep families together and position communities and countries for success without the burdens of this ancient disease.

The first-ever UN High-Level Meeting on Tuberculosis (HLM) on September 26 is a landmark opportunity to marshal political will and resources to end TB and achieve this vision. Member states can defeat TB and overcome antimicrobial resistance by closing the funding gap for TB research and product development through equitable approaches, securing universal access to new medicines and fostering global collaboration.

In the years to come, we expect to look back at this meeting’s outcome as the moment when world leaders marshalled the political will and resources needed to finally end TB and leave no one behind.

Learn more about TB Alliance here.

Creating Shared Value in Global Health: Growing Markets, Making Progress

This blog post was written by Neeraja Bhavaraju, Director at  FSG. FSG is a mission-driven consulting firm for leaders in search of large-scale, lasting social change to help them unleash their full potential to re-imagine social change.’They are a 2018 Global Health Council Member.

Every pharmaceutical and medical device company is trying to explore new markets, grow their reach, and expand their impact – in other words, to create “shared value” by delivering business value for the company by improving access to quality healthcare products and services for people around the world.

While most business leaders know shared value opportunities in low-income or hard-to-reach markets exist, realizing their potential is a different story. To do so, companies must work in new ways, develop deep external partnerships, and grapple with some of the most complex, multi-faceted challenges we face as a global community. Fortunately, this complexity has not deterred a group of innovative companies who are actively working to create shared value in global health.

FSG first highlighted these innovative efforts in 2013 in a report titled Competing by Saving Lives: How Pharmaceutical and Medical Device Companies Create Shared Value in Global Health. At that time, companies were just starting to shift away from a reliance on product donation programs towards business-driven strategies to build and strengthen sustainable markets for their products.

Now, in a new interview series, we are checking-in with those we profiled to understand not just what they are doing, but how they are doing it. In these conversations, leading shared value practitioners share their successes, struggles, and hard-won lessons learned. Across the interviews, we explore how companies are starting new efforts and evolving long-standing initiatives, how they are establishing new partnerships and investing in internal innovation, and how they are expanding the definition of their core business to achieve greater access and impact.

Highlights from the interviews include:

  • Addressing the global unmet need for vision correction and eyeglasses through a sustainable, scalable business model with Essilor
  • Leveraging the unique power of generics manufacturers to address the biggest global health challenges with Mylan
  • Finding new ways to expand access to care and treatment in emerging markets with Eli Lilly
  • Tackling the cancer challenge in sub-Saharan Africa with Pfizer.
  • Innovating new business models and making the shift from products to services with Medtronic.

We will continue to add new interviews over the coming months with other leading companies effectively addressing global health challenges, including UPS, Merck, Abbott Labs, and Novartis among others. You can subscribe on the site to receive updates as we continue to engage in an exciting dialogue about how companies can best contribute to solving global health challenges.

You can learn more about FSG here.

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

How an action tank can catalyze issues and change the world

This blog post was written by Gabrielle Fitzgerald, the Founder and Chief Executive Officer at Panorama. Panorama’s mission is working to solve global problems through audacious thinking and bold action. They are a 2018 Global Health Council Member.

I launched Panorama in early 2017 with a new vision for how to solve complicated problems. We call ourselves an action tank because we engage deeply with our partners to develop and execute solutions together. This is a unique, entrepreneurial model that drives action on local and global social issues by influencing people and policy. We are now a team of more than 20 strategists, advocates, analysts, and storytellers, all with a passion for changing the world.

An action tank aligns the critical components we know are needed to make progress on any issue, whether it’s malaria or neglected tropical diseases or violence against children. These components include:

  • Insight that comes from systems thinking and analysis of an issue, leadership, or organization.
  • Influence enabled by the right combination of advocacy, stakeholder engagement, communications, and resource mobilization.
  • Incubation & Infrastructure through such services as fiscal sponsorship, grant making and management, organizational design, and fund management and administration.

Our fiscal sponsorship program, for example, is a way for Panorama to support other organizations pursuing charitable activities that are aligned with our mission. Current projects include TogetHER, a group fighting to end cervical cancer in developing countries.

One of the most exciting elements of an action tank is that we initiate projects when we see gaps that need filling, such as our menstrual health work to fight the stigma that can limit women and girls, or our collaboration with Rockefeller Foundation to unite the health and environment sectors around the emerging concept of Planetary Health.

A high priority for us is to rally decision makers around the need to prepare for the next global pandemic. I recently co-authored an article in the British Medical JournalGlobal epidemics: How well can we cope? We reviewed the many initiatives and organizations set up after the 2014-15 West Africa Ebola outbreak and concluded that serious gaps remain in terms of leadership, funding, and monitoring. Despite the rapid response and excellent work by WHO in recent outbreaks, I fear we are woefully unprepared for a global outbreak, especially one caused by an unknown virus.

To help push the conversation forward with key decision makers, we are co-hosting with the United Nations Foundation and PATH a panel alongside the UN General Assembly to celebrate the global community’s success in stemming recent outbreaks while highlighting what still needs to be done to ensure the world is prepared for a major outbreak.

Panorama works on a wide range of global health issues, but we think big and bring the energy, scope, and conviction of an action tank to every partnership we build.

Learn more about Panorama.

(Image courtesy of Panorama: Gabrielle Fitzgerald speaking with staff at the national 115 Call Center in Conakry, Guinea, during the Ebola outbreak in 2015)

The 5 ‘C’s for Women’s Leadership in Global Health – Lived Experiences Across a Generation

This blog post originally appeared on the Women in Global Health website, and was written by Dr Roopa Dhatt, Executive Director, Women in Global Health, and Ann Keeling, Board of Directors, Women in Global Health.  Women in Global Health’s mission is to bring together all genders and backgrounds to achieve gender equality in global health leadership. They are a 2018 Global Health Council member.

Women in Global Health’s Executive Director Roopa Dhatt and Board of Directors Member/Senior Fellow Ann Keeling sat down to discuss questions on women’s leadership in global health posed to WGH for a presentation. We recorded the conversation and decided to turn it into a blog. This conversation spans a generation and reflects a multitude of lived experiences.

Roopa is an Indian-American, early career global health advocate who entered the space as a youth leader She is now practicing international health and is a primary care physician, in addition to leading WGH.

Ann has over 35 years’ experience in human and social development working for UN, Commonwealth and governments of UK, Papua New Guinea and Pakistan. Ann was Head of Gender Equality for the UK government, CEO of the International Diabetes Federation and founded the NCD Alliance.

Question: How has your experience in global health been different because you are a woman?​

Roopa: Speaking as a medical practitioner and a global health advocate with social identities of being a woman, a woman of color and an immigrant, my reflections are shaped both by my personal journey and the journeys of the people I have met.  Foremost, I feel I can empathize with the women and girls who are the most marginalized in global health and understand some of the gendered and cross-cultural issues they face. I am more convinced them ever before, that a diverse world needs diverse thinking. The dominance of one group in decision-making in global health leads to group thinking which fails to recognize and challenge the social determinants of health for women and girls – specifically, the gendered determinants of health – and fails to recognize the health needs of women and girls. The upside of being a woman in global health is being able to bring issues to the decision-making table that always should have been a priority, but simply weren’t because the needs of women both as patients and as health workers were not considered important.

 

 

 

Ann: Agreed! We have been working on global health for decades but to give an example, it is only in the last couple of years that menstruation as a political, economic, social and a health issue has been put onto the global health agenda and spoken about publicly. I am delighted to see groups advocating on menstruation and leveraging action. I can’t think why we didn’t make menstruation central to reproductive health and rights a long time ago. We all know women and girls menstruate but the taboos surrounding menstruation have kept millions of girls out of school and until recently, meant that supply kits for refugees did not include sanitary protection. If men menstruated it would be revered and not treated as a cause for shame. As women in global health we have an opportunity to flip the narrative and bring different perspectives that will strengthen global health for all genders.

 

Roopa: At the same time, the downside for women in global health is that we face the paradox of being the majority of global health and social care workers, but being in the minority in decision-making. Leadership in global health still has a male face despite health being an increasingly feminized profession. Women can expect to face additional barriers, micro aggressions, unconscious biases etc. that keep us in second place.  And the gender disadvantage is multiplied many times for women of color, some religions, transgender women and for women from the global South.  We don’t start with a level playing field and women who question the status quo risk being branded troublemakers. We believe, based on individual reports, that female health and social care workers commonly face sexual harassment and violence from male colleagues, community members and even their patients. This creates a toxic working environment for women in global health that their male colleagues rarely face.

Ann: I’ve just read the report just out from the UK House of Commons on ‘Sexual Harassment in the Workplace.’ [1] It estimates 40% of working women in the UK experience unwanted sexual behaviour at work despite it being unlawful. It generally isn’t reported, is often regarded as a ‘normal’ part of office culture and many male managers seem genuinely unaware – that in itself is a compelling argument for gender parity in leadership. Even in UK there is no reliable data and the burden of calling abusers and employers to account falls on the victim. Ensuring zero tolerance of sexual harassment in global health is essential if, as you say, we are to level the playing field at work between women and men. It is also essential to fill the 40 million new health and social care jobs needed to reach Universal Health Coverage. We need women to fill those jobs and that won’t happen if they battle sexual harassment and violence as an everyday reality at work.

 

Roopa: The #MeToo movement has taken the lid off this particular Pandora’s box and the secrets mainly shared by women are now becoming public knowledge. It’s also true that we have very little research and data on incidence in the global health and social care sector. Although there has been push back and we are told uncertainty has been created for some men who now feel unsure how to behave with female colleagues. But that uncertainty cannot compare with the stress and suffering women have endured and continue to endure as a result of workplace sexual harassment and violence. The two aren’t equal in the balance. I’m encouraged that these issues are out in the open now. Momentum has been building to advance gender parity in global health leadership and gender equality in global health. Awareness is growing that gender equality brings smart global health. We are gaining ground and bringing both men and women with us. This is the very best time as a woman to be working in global health. 

Roopa: The #MeToo movement has taken the lid off this particular Pandora’s box and the secrets mainly shared by women are now becoming public knowledge. It’s also true that we have very little research and data on incidence in the global health and social care sector. Although there has been push back and we are told uncertainty has been created for some men who now feel unsure how to behave with female colleagues. But that uncertainty cannot compare with the stress and suffering women have endured and continue to endure as a result of workplace sexual harassment and violence. The two aren’t equal in the balance. I’m encouraged that these issues are out in the open now. Momentum has been building to advance gender parity in global health leadership and gender equality in global health. Awareness is growing that gender equality brings smart global health. We are gaining ground and bringing both men and women with us. This is the very best time as a woman to be working in global health. 

 

Question: What one piece of advice would you give another woman looking to enter the global health field?  

Roopa: Go for it! We can’t wait for someone else to step forward and bring change so be the change you want to see.

Ann: As Helen Clark said, know that there will be no red carpet laid out for you when you take up a leadership role and second, join Women in Global Health to advocate for change and for support and inspiration.

Roopa: Tips that I have learned along the way or that have been passed along: 1) Be a part of a community – join a group or network that can support your journey; 2) Build relationships that matter – invest in professional relationships, they help you grow and find opportunities; 3) Explore your interests- don’t be afraid to diverge from the classic path; 4) Integrity matters – stay true to your values; 5) Most importantly, take care of yourself—resilience is a learned practice and much needed in this space!

Roopa: Go for it! We can’t wait for someone else to step forward and bring change so be the change you want to see.

Ann: As Helen Clark said, know that there will be no red carpet laid out for you when you take up a leadership role and second, join Women in Global Health to advocate for change and for support and inspiration.

Roopa: Tips that I have learned along the way or that have been passed along: 1) Be a part of a community – join a group or network that can support your journey; 2) Build relationships that matter – invest in professional relationships, they help you grow and find opportunities; 3) Explore your interests- don’t be afraid to diverge from the classic path; 4) Integrity matters – stay true to your values; 5) Most importantly, take care of yourself—resilience is a learned practice and much needed in this space!

 

Question: How can we advocate for ourselves as women leaders?

Ann: We must advocate for ourselves as individuals and advocate for all women as a group to have equal access as men to leadership opportunities.

Roopa: We must be evaluated on our merit, but we know that access to opportunities is a much bigger issue of privilege and power.

Ann: As women we must recognize there are deeper power dynamics, patriarchal culture, policies, practices of the organizations and systems in which we work. We need to be both competent and have the courage to speak out, put forward ourselves and other women, while working with others, men and women to address the root causes of inequity.

Roopa: The more I work in global health, especially in gender, in addition to viewing everything through a gender lens, I have learned to also look through the political lens. The spaces we operate in are always political – learn how to read the political dynamics. An organization not only has a unique culture and set of values, but it likely operates by a set of gender norms and bias, which affects all people. Be aware and responsive– take advantage of opportunities to challenge gendered norms and expectations when possible. 

Ann: Keep trying! Learn how to stand up again and again, when you are knocked down.


Question: How can we serve our fellow women as mentors and role models?

Roopa: I believe we can serve both MEN and women by being role models and mentors. It is essential that men also see women in positions of leadership and that women’s leadership becomes normalized and accepted by all genders as something unremarkable.

Ann: We need to distinguish between mentoring and championing. It’s common for men in leadership to champion the careers of younger men, which rarely happens for women. Men champion men in their own image, younger versions of themselves, and do it in the name of mentoring. I have frequently seen senior men make contacts for other men, put a word in for them when they apply for promotion and encourage them to apply for promotion while no-one encourages their better qualified female colleagues. For me mentoring is more about guidance and identifying skills gaps, rather than advocating for career advancement. I am concerned that mentoring schemes for women will focus on guidance and building skills but will not help women advance if the male to male version of mentoring continues to be one group of men championing younger men to succeed them. 

 

Roopa: It is critical when we think of mentoring that we don’t try to change ourselves as women to fit into systems designed for men.  It’s not women that have to change, it’s the power dynamics of the patriarchal systems designed to exclude women. This is a very important message when we are mentoring both men and women. When you find yourself excluded don’t ask ‘what’s wrong with me?’, instead ask ‘what’s wrong with the system and how does it need to change?’ We must aim not only to join the system but also to transform it so it is fairer, merit based, diverse and therefore better. We also need to engage men in senior roles to mentor early career women as well as men.

 

 

 

Ann: When I started in my career overseas with the UK government there were almost no women in senior jobs to be role models for me. The British government had a ‘marria

ge bar’ until the early 1970s meaning women in the overseas service had to resign when they married.  We understood that to be one of the few women, like Margaret Thatcher, who

made it into leadership, we had to be better than all the men around us and play by men’s rules. We have come a long way in the last 40 years and as you say, we now aim to change the system and not just join it. As role models we can best inspire both women and men by demonstrating the four ‘Cs’- Competence, Commitment,Courage and Change.  

Roopa: And I would add a fifth ‘C’ – Compassion. And say that those five ‘Cs’ are what we are looking for in all leaders, all genders, to drive global health leaving no-one behind.

 

References

[1] House of Commons Women and Equalities Committee ‘Sexual harassment in the workplace, Fifth Report of Session 2017–19, HC 725 Published on 25 July 2018 by authority of the House of Commons, https://www.parliament.uk/womenandequalities

 

Learn more about Women in Global Health here.