This week marks the 10th anniversary of the adoption of the Convention on the Rights of Persons with Disabilities (the Convention) by the United Nations General Assembly. The Convention has been ratified by 170 countries and established frameworks and reporting requirements to ensure the inclusion of all individuals with disabilities in social, political and economic life. The World Bank estimates that one billion people, or 15% of the world’s population lives with some form of disability making the Convention a critical accountability tool to ensuring the rights of a huge number of individuals worldwide.
Since the adoption of the Convention and due to the commitment of a huge number of disability advocates around the globe, there have been enormous strides in the advancement of disability rights and inclusion including having disability rights included in the Sustainable Development Goals, movements away from the institutionalisation of those with disabilities and the generation of action plans at the national level in several countries to create concrete strategies for disability inclusion. However, despite these advances, there is much work still to be done.
There are very real battles being fought to ensure adequate access and inclusion across all social situations, particularly legal interventions, health care, education, public transportation and employment and those with disabilities are still extremely vulnerable to poverty, exploitation and marginalisation. Particularly vulnerable are those with disabilities who are caught in the global forced migration crisis, facing the vulnerabilities associated with their migration status compounded with the vulnerabilities of their disability. The UN notes that forced migrants with disabilities are more likely to be ‘sidelined n every aspect of humanitarian assistance due to physical, environmental and societal barriers against accessing information, health and rehabilitation service and human rights protection’.
The anniversary of this groundbreaking tool is an opportunity to evaluate where the global community has succeeded and to celebrate those successes, but it is also an opportunity to review where we have fallen short and to double down on our commitment to ensuring inclusion and equity for those living with disabilities and to seeing those priorities work through national and international policies across the board.
A few weeks ago I wrote a blog post about what the results of the cannabis ballot initiatives could mean for legalization in the U.S.. I mentioned that although four new states legalized cannabis for personal use, it will be a couple of years until we see these fully implementing their regulated markets. However, while we wait for those state’s to join California, Washington, Oregon, Alaska and DC, we have a lot of information to analyze how legalization is looking so far. All these numbers will also help shape any new state’s model to come, trying to fill gaps or improve problems that may arise.
In October, the Drug Policy Alliance released a report detailing what we know so far about cannabis legalization in the states that are already up and running. While it is still too early to make any definite conclusions, preliminary reports suggest that the effects of legalization have been either positive or negligible. The report focuses on four main areas: youth use, arrests, road safety and tax revenues. Here are some of the biggest findings. Read More
This post was written by Debora Diniz. Debora is a tenured professor at the Law Faculty of the University of Brasília and visiting professor on the Bioethics, Applied Ethics and Public Health Program at Oswaldo Cruz Foundation (Fiocruz) in Rio de Janeiro, as well as a researcher at Anis – Institute of Bioethics. Debora is the Vice-Chair of the board of the International Women’s Health Coalition (IWHC), an Advisory Committee member of Global Doctors for Choice, and member of Renezika, the National Network of Specialists in Zika and related diseases. Any questions or comments can be directed to email@example.com.
The Zika virus arrived in Brazil in 2014, probably during the World Cup. As of September 2016, over 200,000 probable cases of Zika fever have been diagnosed in the country. The Zika infection itself can be an ordinary, mostly harmless disease that causes skin rash and pain, and was commonly referred to as a lighter version of Dengue before the new virus was identified. But in late 2015, Brazil began facing what the World Health Organization (WHO) came to recognize as a Public Health Emergency of International Concern (PHEIC) in February 2016: neurological disorders associated to the Zika virus epidemic.
For women of reproductive age, a Zika infection can be devastating, because it can cause significant harms to pregnant women and to their future babies. Although Zika is primarily spread through mosquito vectors, it can also be sexually transmitted, and other forms of transmission are still under investigation. Initially described as capable of causing microcephaly – a condition in which the baby’s head is significantly smaller than expected – through vertical transmission, scientists now know that what Zika can cause is the congenital Zika syndrome, which refers to a wide range of conditions including not only – and not always – microcephaly, but also physical, hearing and visual impairments and frequent seizures.
As of December 2016, the Zika virus was circulating in 75 countries and territories of the Americas and Western Pacific and South-East Asia regions, and 28 of them have reported cases of microcephaly and other central nervous system malformations suggestive of congenital infection. Brazil remains at the center of this crisis, with over 10,200 suspected cases of congenital Zika syndrome, of which 2,189 have been confirmed so far. For the last four decades, the Brazilian population, especially those living at the Northeastern region – the least developed area in the country – have been made to live with Aedes aegypti, the primary Zika mosquito vector, due to failed vector control, sanitation and access to water policies.
As a sexually transmitted infection with potentially devastating effects from vertical transmission, the Zika epidemic is a sexual and reproductive health and rights issue. The populations at higher risk for the epidemic are poor black and brown women from the region. Having scant access to health care information and services, when pregnant, these women are potentially subjected to psychological torture. They cannot know if and how Zika might affect their pregnancies and their own health. They do not have the right to legally terminate their pregnancies (abortion is illegal in Brazil except in cases of rape, if the woman’s life is at stake or anencephaly) and cannot afford to have illegal but safe abortions. They do not have the means to care for potentially affected children and these children are frequently abandoned by their partners. The Zika epidemic is a public health emergency tragically aggravated by the social disparities in the country. To share stories of the first generation of Brazilian women affected by the epidemic, Anis – Institute of Bioethics, the organization I co-founded, produced the short documentary film Zika, available online.
The Brazilian government’s response to this crisis has been slow and inadequate, and the epidemic has become invisible in the middle of the worst political and economic crisis in decades. In response to the government’s inadequate actions, Anis developed the strategy for a judicial case filed by the National Association of Public Defenders (ANADEP) before the Brazilian Supreme Court last August. The case demands basic protections for women, affected children and families: the right to access information related to the epidemic; the right to access a diverse range of contraceptive methods and distribution of mosquito repellent as a family planning method; the right to interrupt the pregnancy if the woman has been infected by Zika and is experiencing mental distress; the right to free transportation to health care facilities and the right to a disability cash transfer program (BPC) for all children with the congenital Zika syndrome.
Over the last few months, several organizations – including many anti-choice groups – have presented amicus curiae admission requests on the Zika case. In its own request, Anis filed a submission by some of the UN Human Rights Council Special Procedures mandate holders which concludes that the denial of abortion services in the context of Zika may amount to torture and/or cruel, inhuman or degrading treatment. The Brazilian Supreme Court is set to rule on the preliminary injunction of the Zika case on December 7th 2016. The case’s claim before the Brazilian Supreme Court is clear: we might not yet know everything there is to know about the Zika virus, but we do know that women and girls are at the center of the epidemic and that protecting their sexual and reproductive health and rights is essential to protecting public health.
This post was written by Dena Kirpalani. Dena is an LL.M. candidate in Global Health Law and International Institutions at Georgetown University Law Center. Any questions or comments can be directed to firstname.lastname@example.org.
The ruling by the Court of Appeal on November 11, 2016 put to bed a disagreement in England over which authority was responsible for the provision pre-exposure prophylaxis (PrEP). PrEP is a single pill that can be taken once a day to prevent those who are substantially at risk of acquiring HIV from developing the disease. The High Court had previously ruled that NHS England had the power to commission PrEP but NHS England took the point to an appeal.
NHS England put forward a technical argument claiming that the provision of PrEP was a public health function that had been delegated to local authorities under the Health and Social Care Act 2012 (‘2012 Act’) and secondary legislation. It argued therefore that there was no duty (and thus no power) for NHS England to commission PrEP.
PrEP has the potential to substantially reduce the number of new infections in those groups who are most at risk of acquiring HIV. 103,700 people were diagnosed as living with HIV in the UK in 2014 with 6,151 new infections that year. Men who have sex with men (MSM) remain in a group that is at high risk of acquiring new infections.
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.
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The views reflected in this blog are those of the individual authors and do not necessarily represent those of the O’Neill Institute for National and Global Health Law or Georgetown University. This blog is solely informational in nature, and not intended as a substitute for competent legal advice from a licensed and retained attorney in your state or country.