Policy and Advocacy

2014; Volume 15, No 9, September

Policy and Advocacy

by Katherine Pettus, PhD
IAHPC Advocacy Officer

I was privileged to represent IAHPC at the UN at the 5th Open Ended Working Group on Ageing (OEWGA) that took place between July 29 and August 1. Many international civil society groups took part in the meetings to support the rights of older people and advocate with UN member states. The UN Programme on Ageing is part of the Division for Social Policy and Development (DSPD), United Nations Department of Economic and Social Affairs (UNDESA).

It is the focal point within the United Nations system on matters related to ageing. As the focal point, its primary action is to facilitate and promote the Madrid International Plan of Action on Ageing, including designing guidelines for policy development and implementation; advocating means to mainstream ageing issues into development agendas; engaging in dialogue with civil society and the private sector; and information exchange.

The UN General Assembly established the OEWGA in 2010 to study the rights of older populations in the context of the alarming global rise of non-communicable diseases and the new demographics of ageing. The Working Group was to consider a Convention on the Rights of Older People that would follow in the human rights lineage of the Convention on the Rights of the Child, the Disability Convention, and the Convention on the Rights of Migrants.

It will require consistent and concerted advocacy to ensure that good language about hospice, palliative care and access to controlled medicines is included in a new convention on the rights of older people. The OWEGA and related fora are opportunities to sensitize new audiences about palliative care and the problem of availability, accessibility and affordability of opioid pain medicines in much of the world. Such collaboration is key for the palliative care sector because developing policies to improve access to pain medicine in the Lower and Middle Income Countries has never been a public health priority.

Photo: Dr. Katherine Pettus speaking to the plenary of the Open Working Group on Ageing at the United Nations on the rights of older people to palliative care and pain relief.

Many member states – including the US, Canada and the EU – strongly oppose the development of a new human rights instrument, claiming that older people already have sufficient institutionalized legal protections under current national and international law. UN member states from the global south, however, support a new convention.

The Human Rights Council has appointed the first Independent Expert (IE) on Ageing, Dr. Rosa Kornfield-Matte from Chile. I introduced myself as IAHPC Advocacy Officer to Rosa and her staff, and raised the issue of access to essential controlled medicines – particularly in the global south – as a human rights issue. If advocacy groups can assist the Independent Expert to include the issue of access to opioids in her country reports and thematic statements, we will be further along at the Human Rights Council. IAHPC will keep members informed about the IE’s country visits. For more information, see the Independent Expert and her first report

My other foreign trip this month was to Minsk, to visit the Belarusian Children’s Hospice and learn more about how this unique national non-profit agency has used international human rights law to frame its service provision, advocacy and fundraising. Director, Dr. Anna Garchakova and grant writer Elena Anasimova are politically savvy women who know how to interface with international human rights treaty bodies to advance the cause of children’s palliative care.

Interestingly, their Ministry of Foreign Affairs and Ministry of Health ask BCH to collaborate in writing the Universal Periodic Reviews for Belarus that are presented to the Human Rights Council in Geneva each four year cycle. As a result of one of these reports, the Concluding Observations of the Committee on the Rights of the Child to the 3rd and 4th Periodic Reports of the Republic of Belarus cited the country for lack of political commitment and insufficient involvement of state institutions in the provision of palliative care for children. This then prompted the Ministry of Health to issue an order determining general conditions for palliative care service development in Belarus and stipulated the creation of palliative care wards in hospitals and children’s homes.

The noticeable gap, however, was lack of state funding for medical equipment and medicines for home care and respite services. Since the majority of children, and of course their parents, prefer children to be at home whenever possible, BCH fundraises to fill that gap.

In partnership with UNICEF and contract staff from the Ministry, BCH cares for at least 300 children annually, the majority diagnoses being congenital and neurological disorders, and about 20% cancers. The hospice, which will soon move to new quarters, has three bedrooms for respite and acute care, as well as a teaching room for clinical providers who come from other former Soviet republics to learn about children’s palliative care.

Katherine Pettus, PhD (Hungary)

Dr. Pettus is the IAHPC Advocacy Officer for Human Rights and Palliative Care and serves as the IAHPC liaison to the International Drug Policy Consortium and the Vienna NGO Coalition on Drugs. Her bio may be found here.

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