The Key Role of Advocacy in the Health Care Debate

The reasons why The Atlantic Philanthropies made what may be the largest U.S. advocacy grant ever in order to support health reform are outlined by Gara LaMarche, Atlantic’s President and CEO, at the Grantmakers in Health conference in Orlando, Florida.


Occasionally it is better not to know some things, and I have to confess I think I made a mistake, in preparing to address you this morning, by sitting down to read the remarks of those who came before me in keynote addresses to Grantmakers in Health.People like Mike Huckabee, Paul Farmer, Steve Schroeder and Michael Marmot were so eloquent, and so passionate about equity issues in health and health care that I feel a bit like an impostor at this podium.I’ve been wondering in recent days about what I could possibly say that would add anything to their experience and perspective.


And yet here I am, the President of a major global foundation deeply immersed in health issues in eight different countries, with an opportunity to share some reflections in a room filled with the assembled funders, many of them thought leaders in the field, working on health in the U.S. and around the world.So I am going to plunge in.Upon reflection, I might have a few things to contribute.The speakers I mentioned are all people who have devoted most or all of their public lives to improving health, and they spoke for the most part of the big picture – the context, fixed and changing, in which we all work.I want to aim a bit lower, as a generalist, and talk about the choices one funder has made and why, in the hope it will have some value to the colleagues in this room, on whose shoulders Atlantic stands and from whose knowledge and experience we have gained so much.


First, I want to share the perspective of an advocacy funder which strongly emphasises public policy advancement in its grant making, and which made what may be the largest-ever grant for a U.S. advocacy campaign when it committed over $25 million dollars in 2008 to Health Care for America NOW!, the leading coalition pressing for comprehensive health care reform in the United States.If the theme of this meeting is taking risks, that was a big one.


Second, I want to share the perspective of a global funder whose U.S. work has been enriched and informed by what we have learned working in Ireland, Viet Nam, South Africa and elsewhere.


Third, I want to share the perspective of a multi-issue funder, whose programmes on ageing, youth and human rights have both influenced and been influenced by our work on health issues.


Maybe I’ll start backwards, with the issues we work on.The Atlantic Philanthropies, which I have been privileged to lead for almost three years, decided before I got there to take its then $4 billion in assets and spend them all.Not that many foundations take the path of getting rid of all their money, but Atlantic, spurred by our founder, Chuck Feeney, did it not for the sheer joy of it – though it is fun – but for one overpowering reason:to do more good now achieving lasting social justice.The idea is to focus concentrated resources – big, multi-year grants, surrounded by capacity-building assistance – on achievable goals within large areas of social concern.Atlantic is not the only foundation to approach strategic grant making this way, but we are able to do it, given the size of our assets and how deeply we are willing to draw from them, at an unusual scale.


What is more distinctive about Atlantic, indeed all too rare in philanthropy, is the lens we have come to apply to all our work:what we call a social justice framework.A social justice framework puts a premium on addressing the causes of inequities that prevent people from participating fully in society and that perpetuate disparities in power and access.It aims at institutional or systemic change to eliminate the sources of continuing inequities rather than focusing solely on their symptoms.


In that sense, a social justice approach to society’s problems and challenges is like a holistic approach to health itself:everything is connected, and while it is often necessary to ameliorate and palliate, it is always more costly and dangerous to do so.Better to invest in pre-natal care than a neo-natal intensive care ward; in good nutrition than dialysis and insulin treatment; in seat belts and child seats than emergency room triage.I believe this essential understanding is why the term social justice appears in GIH’s own mission statement, in the context of expressing commitment to diversity and cultural competency.


Put another way, a social justice frame asks not only who is disadvantaged and vulnerable and what their needs are, but also why that group of people is disadvantaged and vulnerable. To take this out of the realm of the abstract one need only look at classes of people that are historically marginalised – why, in the oft-quoted health disparity anecdote, a black man in Harlem has a shorter life expectancy than his counterpart in Bangladesh, why indigenous children in Alaska have such terrible dental problems or why off-road vehicle accidents are a leading cause of death for Native Americans on the Pine Ridge Reservation in South Dakota.As Paul Farmer put it to you in his keynote talk four years ago, “if you want to talk about crack addiction among African Americans in New York City, do you really not want to talk about … institutionalised racism?”


Our board chose four areas in which to pursue social justice:children and youth, ageing, human rights and health.I’ll tell you about the health-focused programme at greater length in a minute, but first I want to talk about how health threads through the other programme areas, since human beings – their problems and progress, challenges and opportunities – don’t fall into the neat silos of any foundation strategy white paper or funding guidelines.The fact is, almost every funder, whatever its stated objectives, is a health funder, since health is virtually inseparable from every other social good.


I’ll detour for a minute, to illustrate this point, to my 11 year tenure at the Open Society Institute, where I was Vice President and Director of U.S. Programs.We didn’t consider ourselves a health funder in the U.S., and it was not among our articulated concerns or programme baskets.Yet in trying to protect and advance women’s rights, we supported grantees and initiatives to ease access to “Plan B” contraceptives.In trying to promote public safety and a fair and rational criminal justice system, we helped found and lead the Funders Collaborative on Gun Violence, to press for sensible policies to reduce pointless avoidable death and injury.In trying to open debate on zero tolerance drug laws and policies, we supported needle exchanges and harm reduction programmes.And in trying to change policy and culture about the end of life, we funded dozens of physicians and other health professionals in the nation’s leading teaching hospitals working to promote and institutionalise better palliative care.That was the kind of non-health funder we were.


Back to Atlantic, in addition to our explicitly health-focused programme, about which more in a minute, health is a prominent theme of our Children and Youth Programme, which, for example, backed seven grantees with approximately $9 million over a three-year period to support the successful reauthorisation of the State Children’s Health Insurance Program last year.Among other grants, Atlantic has also provided $500,000 to the National Assembly on School Based Health Care to build its organisational capacity to engage in advocacy and to provide technical assistance in the implementation of school-based health centre at Elev8 sites, Atlantic grantees that provide integrated support services to students and their families. We are joined in these investments by many of you in this room. At each of our Elev8 sites, Atlantic has supported the development of school-based health clinics that are vital vehicles for enrolling children into health insurance and ensuring that they receive the preventive health care they need.


Ageing, a programme area in which Atlantic is the leading private funder in every country in which we work, is not, of course, just about health.Much of our emphasis is on the enormous capacity of older adults to contribute long past traditional “retirement” time to meaningful work, including “encore” careers, volunteer service and lifelong learning, as well as social action on their own behalf and for other groups and issues.Our ageing programme supports a number of health-related organisations and initiatives, whose combined grants total more than $86 million in the United States.To address its chronic care, delivery and advocacy objective, Atlantic has supported organisations like the National Partnership for Women and Families’ Campaign for Better Care, and the New York Academy of Medicine to advocate for care coordination for low-income older adults.To strengthen the direct care workforce that cares for older adults, Atlantic has funded the Direct Care Alliance and the Paraprofessional Healthcare Institute.To develop human capital in geriatric care, we’ve helped establish models with the New York University College of Nursing, among others, and embed geriatrics in professional societies through support to Boston University School of Social Work and the American Academy of Family Physicians Foundation.And we’ve invested more than $20 million to develop leaders in geriatrics.


Finally, Atlantic’s Founding Chairman Chuck Feeney believes that sustainable scientific progress in biomedical research will bring advanced medical care to disadvantaged and vulnerable people, and together, world-class institutions are more likely to develop medical breakthroughs greater than any single institution would achieve alone. In 20 years of Founding Chairman grants of this kind, Chuck Feeney has never lost sight of the big picture in funding the construction of state-of-the-art labs and facilities from Queensland, Australia to San Francisco and New York – developing research capacity at existing institutions, forging collaboration across universities and research institutes, supporting efforts to bring laboratory discoveries to clinical trial in order to get treatments to the people in need, and leveraging Atlantic’s resources to generate unprecedented levels of support from government and other philanthropists.


So Atlantic and any foundation working on children’s issues or ageing, the environment or higher education, civil rights or international affairs, finds itself – or ought to – a health funder.Because whether children come to school ready to learn, and focused on their studies when they get there, is to a great extent a function of their good health – whether they are safe from violence, well-nourished, able to see the blackboard, free of dental pain, and so on.Whether older people are able to engage in social action, work, volunteering or study, has everything to do with their economic security – whether they are hobbled by medical bills and prescription costs, whether their chronic ailments are addressed in an effective, comprehensive way or allowed to fester, mount and impede their participation in the community and civic life.


So, too, do Atlantic’s other programmes affect the way we look at health.We think about the human rights aspects of everything we do, and agree with President Obama, in his last debate with Senator McCain, in calling health care a right, not a privilege.While health, we believe, is itself a human right, it is also true that health can’t be properly maintained or addressed when other key human rights are lacking.The movement to emphasise the social determinants of health is at root an approach that argues that inequity – an imbalance of rights – makes some people sicker, because they live in a marginalised neighborhood exposed to pollutants, or die quicker, because they don’t have access to preventive care or lifesaving treatment.When drug users or sex workers are treated only as criminals, more people get sick and die.When governments censor information about environmental hazards or food shortages, people are poisoned or starve.


Let me move on to the second perspective I mentioned, which is that of a funder working in a number of diverse regions and countries.What we call our Population Health Programme operates primarily in Viet Nam and South Africa with a little work in Cuba – three far-flung and diverse countries which grapple with the challenge of improving the health of poor people, often in rural areas.There is a lively debate, I know, in the global health world, about the right approach to health in the global south, or even what the right terminology is, since of course language is important, and reflective of underlying values and choices.Some see a laser-like focus on the eradication of certain diseases, however effective or well-intended, as unsustainable in countries where grinding poverty, weak, repressive or corrupt governance, or ineffective or barely functioning health systems can defeat progress.


Atlantic is not a combatant in this debate, and we do our share of campaigns and initiatives focused on disease and injury, from vision restoration to traffic safety.But our own approach has focused primarily on the strengthening of human resources – on doctors, nurses and other health care workers, coming from the communities they serve where possible, but surely accountable to them – within a strengthened public health system.This can be at the local level, as in the health communes of rural Viet Nam, and the district and national level, as in South Africa.


We believe that publicly funded health care systems with an ample supply of well-trained primary care professionals offer the best opportunity for ensuring access to care and delivering quality primary care to all.To develop and strengthen the primary health care systems in the countries in which we are active, we work in partnership with schools of public health, governments, other foundations, communities, professional associations and nonprofit organisations, and we support civil society movements of and on behalf of traditionally marginalised people, from robust organisations in South Africa to nascent ones in Viet Nam, to promote, pressure and educate.


Atlantic’s work in Viet Nam is a story of steady support for the transformation of a poor country, battered by decades of colonialism and war, into one that is working hard, with ever-increasing capacity and sophistication, to meet the health needs of its burgeoning population, particularly in remote rural areas where the 53 ethnic minorities are concentrated.


Since we began working there in 1999, we have spent over $300 million on a variety of construction and other projects in higher education and medical care, including the Ha Noi School of Public Health.To complement the physical facility improvements that Atlantic has funded, we’ve provided support to establish community-based and client-centred innovative service delivery models in five provinces.Each province is then responsible for bringing those models to scale.By working with the local governments, international and local NGOs and the donor community, we have been able to address primary healthcare in a holistic, comprehensive and sustainable way.


Motorbikes are the transportation of choice in Viet Nam, jamming the streets of Ha Noi, Da Nang and other cities.While motorbikes are affordable, they are also dangerous, especially if used without helmets designed to prevent head injuries in crashes. In 2006, 16,000 people died in Viet Nam and 37,000 suffered injuries in motorbike accidents.Thankfully, fewer Vietnamese are dying and being injured since the National Helmet Law took effect at the end of 2007, requiring all motorbike users to wear approved helmets, which reduce the chance of dying by 37%. This accomplishment was the culmination of seven years of diligent work and advocacy by the government and organisations such as the Ha Noi School of Public Health, United Nations Children’s Fund, Asia Injury Prevention Foundation, Counterpart International and The Alliance for Safe Children, with support from Atlantic and other funders.


In South Africa, where we have been working in health since 2004, the health care system has concentrated on increasing access to primary health care services, but blacks, rural populations, the urban poor, women, older adults, children and people with mental illness, physical disabilities and HIV/AIDS receive care that differs greatly in quality from the care offered to others.Improvements in South Africa’s public health system have been challenged by two major obstacles: the AIDS pandemic, and a shortage of appropriately trained personnel.


To ensure access to high-quality care, the South African health care system requires an increase in the number of well-trained and skilled health professionals, especially at the local level, as well as systems and infrastructure to address local health challenges.We support a number of major training institutions, professional networks, and community-based training centres in rural regions to build the human capacity in public health, nursing, and clinical associates to address health needs of all people, but with emphasis on the needs of the poor, supporting innovative pilot programmes that address the recruitment and retention needs of the underserved areas and the implementation of international protocols prohibiting recruitment of health professionals from developing countries.


We have worked to establish models of district health centres in selected provinces to improve management, service delivery capacity and health information systems, and work with provincial government to take proven models to scale, and collaborate with appropriate government agencies to link nursing-related grant making more closely with rural development projects. Most importantly, we work to build the voices of disadvantaged and vulnerable populations to advocate for primary health care access and quality, and I want to talk more about one of those before I close.


Why, you may ask, is Atlantic one of the rare American foundations working in Cuba, through a series of grants to U.S. organisations and institutions? Because for a poor country that has for 50 years faced the unrelenting hostility of a powerful neighbor, laboring under the straitjacket of a trade embargo, Cuba has demonstrated extraordinary success in improving health outcomes, expanding access to health services and protecting vulnerable populations in a resource-poor environment, and its models are relevant to other developing countries and poor communities. Some 35,000 Cuban health professionals now serve in poor communities in 70 countries, and Havana’s Latin American Medical School enrolls 25,000 students from the Americas, Africa and Asia.The current U.S. embargo has caused significant hardships for the Cuban people and has placed significant strains on the health care system over the last five decades. With the slight thaw in the U.S.-Cuban relationship, cooperation through health research and training can likely play a pivotal role in improving ties between the two countries.


Now, finally, to Atlantic as an advocacy funder – why we believe it is a critical tool for improving the health of low-income people and communities of colour, and what we have learned from other parts of the world in advancing our goals here in the United States.


I am speaking to you at a critical moment for health care in this country, when for over a year the President’s determination to enact comprehensive reform, increasing access and attacking affordability, has been the dominant political story, a kind of Perils of Pauline saga in which our heroine has several times been untied and yanked from the tracks just as the train was hurtling toward her.


It has been a sobering year.Poll data that make the cause look like a slam-dunk at the outset have a way of evaporating once the armies take the battlefield.Legislation slated to be signed by the President on an Indian summer day in October was still undone by Christmas, undone in a different sense in January, and all of a sudden it is spring again, and maybe the ceremony will be in a blooming Rose Garden after all.Or maybe it all comes to naught, and in 15 years another administration, and another foundation, can learn – or more likely, over-learn – from our efforts.


But I am getting ahead of myself.When a group of advocates from USAction, the Center for Community Change, the Institute for America’s Future and other progressive organisations, with whom I had worked at the Open Society Institute, came to visit me in my early months at Atlantic with the audacious request that Atlantic, which despite our work on SCHIP and some ageing issues, didn’t really consider itself a U.S. health funder and had no dedicated staff in that area in New York, provide a humongous grant to press for universal health care in the United States, well before there was any idea who would be elected President, much less who would be the nominees of the major parties, I was tempted to show them the door.After all, we were the foundation that accepted only invited proposals, which prided itself on making big bets, but only within carefully articulated programme areas.


But their arguments made an impact on me, because as I listened, I realised that there was a moment – or more to the point, a moment could be created – in which it might be possible to achieve a goal that had eluded Presidents since Theodore Roosevelt who had sought to repair the broken social contract that has left tens of millions uninsured and tens of millions more at the mercy of capricious and cruel insurance company policies, isolating America among the wealthy nations of the world.


Given its particular tax status, Atlantic could fund to a much greater degree the kind of hard-hitting advocacy that would be needed to push the issue forward, and was in a better position to do so given our considerable assets and our desire to get rid of them to advance social justice.Health care for all would build on our youth and ageing work, and advance a fundamental human right in the U.S.What were we waiting for? What were we in business for?


So I took the request to the board, and with enthusiasm but in recognition of the immensity of the challenge, they made the bet.Almost two years later, we have dispersed $26.5 million to Health Care for America NOW!, a coalition of 1,000 groups that has fielded organisers in nearly every state, creating the conditions in which it was possible for President Obama to pursue health care, along the lines of core principles of coverage and affordability that he and hundreds of other members of Congress signed on to. The policy grounds for this had been laid for decades by the most prominent U.S. health funders, the anchors of a group like GIH.But the advocacy muscle needed strengthening.


That can be expensive, and reform advocates have of course been considerably outspent by insurance companies and the like. This will only get worse in the wake of the Supreme Court’s recent, benighted Citizens United campaign finance decision.But our support for HCAN gave advocates more resources to compete effectively than ever before in a significant advocacy campaign. Size and scale matter. And if – as seems increasingly likely as I write, with the Obama Administration proceeding to move health care through Congress in the next few weeks – we get a health care bill after all, $26.5 million to insure over 30 million Americans will seem like a pretty good return on investment – an investment in which we were joined by the California Endowment, the Open Society Institute, and a number of other donors, including wealthy individuals and trade unions.


We backed HCAN because we believed the moment was right in the United States, but what may have seemed a bold departure for Atlantic was in fact heavily influenced by our experience in other countries in which we work. We understand from these commitments and campaigns that only with increased public responsibility and expenditure is there any chance of meeting and sustaining the health needs of the most marginalised people. We learned from our colleagues from Dublin to Johannesburg the power of organising to put an issue on the agenda and keep it there.


From the Republic of Ireland, we took lessons from the Older and Bolder campaign, whose initial goal was to ensure that every Irish political party in 2007 had a policy platform position on issues related to Ireland’s older population as part of the year’s national election campaign.The campaign, a collaborative initiative of five organisations that previously had not worked together funded evidence-based research, mounted an advertising campaign to counter stereotypes about older adults, and ran a systematic awareness-raising and education effort across the spectrum of politicians, public officials and the general public.Not only did the campaign successfully help put the ageing issue into the platform of all the major parties, but the elected government created a new position focused on health matters and issues of social inclusion. Atlantic continues to work with and fund the original five organisations in this collaborative initiative, and the coalition now has plans to extend membership to three other national groups.When in the wake of the Irish economic crisis the government proposed to cut medical cards for people over 70, Older and Bolder took to the streets and reversed the decision in days.


Finally, we were moved to support HCAN by our experience in South Africa.More than three-quarters of AIDS-related deaths occur in sub-Saharan Africa, and South Africa is the country with the highest prevalence of HIV in the world, according to a United Nations report released in November 2007. The South African Government estimates that about 12 per cent of South Africans are infected with HIV, and the economic and developmental impact of the epidemic threatens to undo many achievements of South Africa’s new democracy. Atlantic has long funded the Treatment Action Campaign, which has mobilised a grassroots movement of people with HIV, mostly in poor communities, to advocate for better care and work through the courts to pressure the government to deliver antiretroviral (ARV) medications to people with HIV/AIDS through the public health service.


What we have learned in our work around the globe is that there is no sustainable social progress without social movements – without ordinary citizens, those who need the change the most, taking the lead on their own behalf.There would be no ageing ministry in Ireland without the mobilised voices of older adults.There would be no ARV access in South Africa without the courageous and often in-your-face activism of the Treatment Action Campaign.And with all the ups and downs of the last year, and plenty of mistakes and misjudgments all around – experiences we will try to sort out and learn from when it is over – I don’t believe there would be the strong possibility, still, of significant health reform, without the tenacious advocacy of HCAN and its allies.They are still outgunned, as always, by the forces of insurance companies and other powerful economic actors, but this time not drowned out.


It would seem strange, speaking to a predominantly American audience whose lives are devoted to bettering health, particularly for the poor, not to close with a reflection on the health care debate, which is winding toward final action – which could genuinely go either way, and with it, perhaps, the fortunes of the Obama Presidency – in a matter of weeks and days.Atlantic entered this arena when it was a very long shot, and we have had our share of disappointments and frustrations, with advocates and policymakers.We’ve made some mistakes ourselves.A certain weariness, and, of late, wariness, like Charlie Brown with Lucy and the football, has set in.Any high risk effort of this magnitude is usually something of a mixed bag, and we will learn from the good and the bad.But if this moment passes, there will be no other for some time to come, and President Obama may have been proven right, though not in the way he intended, that he will be the last President to deal with health care reform.


When Lyndon Johnson signed the Medicare bill in 1965, he said that “we have proved, once again, that the vitality of our democracy can shape the oldest of our values to the needs and obligations of today.”Can we do the same?Thanks to the research and policy and capacity-building of so many GIH members, and thanks to the tenacity of advocates infused with resources in the last year, there is a chance that the answer is yes.


Thank you.