Policy and Advocacy

2016; Volume 17, No 11, November

Policy and Advocacy

Policy and advocacy matters – October highlights

Dr. Katherine I. Pettus, PhD, IAHPC Advocacy Officer for Human Rights and Palliative Care, reports on key advocacy meetings in Geneva, Vienna and Barbados.


IAHPC Panel on Palliative Care for Persons with Disabilities

As part of our work to develop a human rights narrative on palliative care, IAHPC organized a panel at the Human Rights Council Social Forum entitled ’Improving Access to Palliative Care for Persons with Disabilities: A Human Rights Perspective’. The panel was co-sponsored by several partner organizations and the Permanent Mission of the Republic of Germany.

It was a joy to interact at the plenaries and receptions with people in wheelchairs, the visually impaired with canes, signing interpreters, and people who are usually not present at the United Nations, those identified as having ’dis’abilities, and who are invisible to the ’abled‘ society. It struck me that I am the one who is dis-abled, not them. I have been blind and deaf to my fellow human beings’ needs, and we are all at best ‘differently-abled.’ Governments are charged under human rights law to support the development of palliative care services for differently-abled people, who are the most marginalized and most vulnerable among us. A shortcoming of our otherwise powerful side event was that we were unable to identify a differently-abled person to speak on the panel about his/her experience of receiving palliative care.

The side event panel was led by the Chair of the Committee on the Rights of Persons with Disabilities (CRPD), Ms. Maria Soledad Cisternas Reyes, who provided the audience with a very powerful analysis of states’ obligations to fulfill the civil and political, as well as the social and economic rights, to palliative care of persons with disabilities. States have an immediate obligation to respect, protect, and fulfill civil and political rights, such as the right to life, and to be free from torture, whereas the rights to health, to work, and to be part of a family, demand progressive realization, meaning states can fulfill them to the best of their ability and financial capacity. Ms. Reyes’ speech can be downloaded: in the original Spanish, and in translation.

IAHPC and partners can now follow up on Ms. Reyes’ challenge by requesting friendly states to include palliative care in country reports and monitoring the sessions of the CRPD.

Uganda workshop with the deaf community

Ms. Rose Kiwanuka, Executive Director of the Palliative Care Association of Uganda (PCAU), who was visiting Geneva to participate in the pre-session of the Universal Periodic Review at the Human Rights Council, gave an inspiring presentation on PCAU’s very original project to reach out to the hearing impaired community. She called for the training of more sign language interpreters who can facilitate sessions between palliative care providers and hearing impaired individuals and family members. Catherine Hoenger, who participated in the development of the European Association for Palliative Care (EAPC) White Paper on Palliative Care for Persons with Intellectual Disabilities, discussed the need to develop palliative care for the growing population of persons with mental illness and dementias. Joan Marston related her extensive and enlivening experience working with children with disabilities in South Africa. All presentations can be found in our Civil Society Initiatives (Advocacy) section.

CND Intersessional

After the Social Forum, Rose and I flew to Vienna for the United Nations General Assembly Special Session (UNGASS) implementation session of the Commission on Narcotic Drugs (CND), which focused on health-related topics, including improving access to controlled medicines for palliative care. Controlled medicines now has its own standalone ’chapter’ in the UNGASS resolution, so civil society advocates were entitled to have representatives speak on the floor about their programmatic implementation of recommendations. Dr. Pastrana, President of the Latin American Association for Palliative Care, spoke about how Colombia, Mexico, Argentina, and other countries are implementing the recommendations, while Ms. Kiwanuka spoke about Uganda’s progress and future strategies. Both presentations are available for download here. Many UN member states, including Russia, Turkey, Mexico, and Colombia, took the floor to inform colleagues of the steps they were taking to afford availability. (View all UN Organization and member state interventions here).

Sadly, the Uganda mission did not attend to listen to Ms. Kiwanuka, nor did any African delegates speak up about improving access to controlled medicines in their countries.

Caribbean Opioid Availability Workshop

IAHPC co-sponsored a Caribbean Opioid Availability Workshop in Bridgetown, Barbados, with the Barbados Association of Palliative Care. Prescribers, pharmacists, and ’competent authorities‘ from eleven different Caribbean countries attended.

The goal of the workshop was for representatives from each country to sit down together to develop collaborative action plans they could implement in the foreseeable future to measurably improve the availability of opioids for palliative care. Many of the prescribers had never met their competent authorities in person before. They described the collaboration that emerged as “amazing” and an “epiphany” because, for the first time, they were able to identify and discuss how to dismantle barriers to availability.

Pictured are members of the Jamaican team with their slide on stockouts. Left to right: Dr. Aleiya Virgo-Herron, Dr. Dingle Spence, Mrs. Coral Clarke and Ms.Verna Edwards.

Liliana De Lima, Martha Maurer (Pain & Policy Studies Group), Duncan Wilson (Open Society Foundations), and I, all lectured on the international control system, data collection, estimates, and human rights. The workshop concluded with all the Caribbean representatives developing action plans to improve availability and access to opioids for medical use and founding CARIPALCA, the Caribbean Palliative Care Association, to strengthen and support palliative care in the Caribbean countries. Presentations can be downloaded here.

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