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This blog was originally posted at the IMAXI Cooperative website. It responds (quite favorably) to a blog by Case Gordon of the IMAXI Cooperative on the Platform for an FCGH transitioning to a formal, Geneva-based NGO.

Sometimes the right to health provides a clear answer. Discriminatory laws must be abolished to ensure the right for all people, and not deny it because of someone’s “legal status” or nationality, for example. The right to health does not always provide a definitive answer, though. To borrow an example from my colleague Alicia Yamin’s book Power, Suffering, and the Struggle for Dignity, consider the right to health requirement of equitable distribution of health services. Providing maternal health services in remote areas may well cost more than in urban areas. For countries in the process of expanding access to care, and where sufficient additional resources are not available, shifting resources from urban to rural areas to enhance equity could well slow overall expansion of coverage, leading to more maternal deaths in the near term. How far should this reallocation to a more equitable distribution go? There is no right answer.

But there is a right process to figure out the answer, a process that will give that answer legitimacy. That is a process guided by the human right principle of participation, with a fully informed public discussion and meaningful participation in decision-making, including and especially by the people whose lives will be most affected; in this example, rural and urban women who rely on public health services.

Meaningful participation, then, should be a constant guide for those involved in health policymaking, whether in allocating health resources within a community, developing a national health strategy, or seeking to secure a global treaty based in the right to health – that is, in securing the Framework Convention on Global Health (FCGH).

And this is the most significant area where the initiative to establish an FCGH has fallen short. I write as someone who has been quite involved in FCGH efforts for the past six years, beginning when a small coalition in 2010 established what was known as JALI, which later evolved into the Platform for an FCGH, where we are today.

It is not that we do not recognize the critical importance of this participation. We do. I have myself written of the importance of having the FCGH reflect, above all, the voices and concern of the people who most experience health inequities and health injustice. We know that participation is vital. This is a matter of principle. The processes related to developing a treaty based on the right to health, including in the present more formative stages, should themselves follow human rights principles. Inclusive participation is also a strategic necessity. Without broad-based support, requiring genuine engagement and a shared sense of ownership, we won’t achieve the FCGH, much less an FCGH that countries will ratify and implement.

This past year has been the one of greatest progress for the FCGH. We’ve gained support from global heavyweight NGOs such as CARE, Oxfam, the International Rescue Committee, and the World Federation of Public Health Associations. And, for the first time, with South Africa on board, a government. Yet still, we have made little progress in mobilizing – and perhaps in gaining the trust of – as Case Gordon put it so aptly, “the communities in [most] need of ‘health justice’.”

There is no single reason for this, though I can point to several. Sometimes we may have valued the end more than the means, gaining the high-level support – above all from countries, though also prominent NGOs that have the most weight with governments – that is most directly related to actually securing a treaty. It is governments that will, or will not, ultimately adopt, sign, ratify, and implement the FCGH. And governments are the only actors that can move the FCGH through either WHO or the UN, as these are intergovernmental bodies. So in deciding how to allocate our limited resources – limited time, limited people (though the limitation in actively involved people may also be a function of this very approach), and limited or no funds – we have focused more at this higher level of political weight. Perhaps we have been neglectful of the fact that above the governments, though, there is a higher plane still: that of the people.

We are also most ready, impatient perhaps, for tangible progress on the FCGH. It has been more than eight years since the treaty was first proposed. And the problems that the FCGH seeks to address persist, continuing to take lives, and in some ways – whether universal health coverage schemes that fail to take a human rights approach or new treaties that have intellectual property provisions that impede access to medicines – may become only more entrenched with time. When people’s rights are being trampled upon day after day, impatience has its virtue. At the same time, though, impatience has its dark side. Rushing efforts to secure rights may lead to a weaker foundation for those rights in the longer term.

We have also have also had limited funding – and over the past two years, none at all. We do have some enthusiastic partners in locally rooted NGOs that work at national level, yet without any funding to support FCGH efforts, they have found their potential to do so quite limited. And despite that fact that the FCGH platform is global – our Steering Committee and Advisory Board members span the globe – the FCGH remains in many (or most) quarters heavily associated with Georgetown University and Washington, DC.

The ambition of the FCGH, while necessary, has added to the challenge. While I think this year has marked a turning point, until recently the FCGH may have seemed unachievable and thus not worth the investment in time and energy with so many immediate human rights violations for civil society organizations to address.

And all of this brings me to the proposal before us. The proposal Case puts forth, for an FCGH NGO, is one that I have come to embrace. At the most basic level, developing an FCGH NGO will end the perception of the FCGH as a Northern (and Washington, DC, at that!) initiative, or one that is narrowly owned. But more than that, it would provide the FCGH initiative the opportunity to engage civil society in new ways. It is an opportunity for grassroots groups and other civil society organizations that (for the still limited numbers that are aware of the FCGH) now may feel that they are looking at the FCGH from the outside to instead be fully part of the initiative, to move from feeling that they are onlookers to feeling that they are – and in fact being – owners.

The FCGH platform has yet to find a way to have members beyond several limited structures. The FCGH NGO, by contrast, could – and I hope will – have an extensive membership of civil society and other interested organizations, with grassroots organizations and networks of people who most experience health injustices central to the membership.

When Case first contacted me about the FCGH one year ago, I felt a surge of excitement and possibility, not only because of Case’s own enthusiasm and commitment, but also because I thought that as a founding member of a network of poorer people living with life-threatening diseases and disabilities, he could bring to the FCGH initiative that missing piece of community engagement. I had no idea then that this could lead to as formative step as it now might, the formation of an FCGH NGO. Now, for all the reasons that Case explained, and thanks to his vision, I believe the FCGH NGO is the way to go.

Forming an FCGH NGO, open to all who are committed to seeing the universal realization of the right to health, may at last enable the FCGH initiative to not only aim at a treaty based in human rights – and with it, policies at community to global levels that advance the right to health – but to also live the principles of the right to health, the principles of the FCGH, in our own actions towards the treaty. The movement for the FCGH will be much stronger for it – and could, at last, indeed become a movement.