Promoting the rights of older people to hospice, palliative care and essential controlled medicines

Categories: Policy.

I was privileged to represent the International Association for Hospice and Palliative Care (IAHPC) at the UN at the 5th Open Ended Working Group on Ageing (OEWGA) that took place between July 29 and August 1. 

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.

Indeed, there were many veterans of the Disability Convention struggle — “nothing about us without us” — present and vocal at the OEWGA. Although most of us don’t think about ageing unless it affects us directly (being in denial!) the specific vulnerabilities of ageing populations have become a universal cross-cutting human rights issue.

In developed and developing countries alike, older people are more likely to live in poverty, be neglected, abused, have poor or no healthcare and to be stigmatised as ‘unproductive’ and a ‘burden’. Older women are particularly subject to neglect and abuse, including sexual abuse and battery. The vast majority will die without palliative care or pain relief since existing human rights instruments do not specifically establish rights to either.

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 sensitise new audiences about palliative care and the problem of availability, accessibility and affordability of opioid pain medicines in much of the world I presented in the role of IAHPC while Dr. Stephen Connor presented on the WHPCA at the side event. I was also able to make two interventions in the plenary about the problem of access to medicines.

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 institutionalised legal protections under current national and international law. The problem, they claim, is implementation, not lack of legal instruments. The proposed new convention for the specific protection of older people will include freedom from age-related discrimination and from financial, physical, emotional and sexual abuse. It will also protect the positive rights to social security, health, employment and property.

Proponents of a convention argue that ageing populations “fall through the cracks” because they are never explicitly mentioned as a vulnerable group in existing human rights instruments. 

Representatives of the John Marshall Law School have started drafting, and presented, the “Chicago Declaration on the Rights of Older Persons” at a side-event at the OWEGA.

Some of transitional civil society organizations present were the Global Alliance for the Rights of Older People (GAROP); HelpAge International, Age International and the International Longevity Center. All these organisations want to include access to relief and palliative care in their policy agendas and will need to consult with national and international associations as they develop their language.

This 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. There is simply too much (perceived) competition on the global public health agenda. Yet since the rights of ageing populations and NCDs are now firmly on that agenda, access to controlled opioids can nest in those domains very nicely. Accomplishing this will require consistent advocacy and cross networking using social media, electronic communication and old style face to face organizing. National and local palliative care advocacy groups can collaborate with national and local groups supporting senior citizens in their countries.

The New Independent Expert on the Rights of Older People

The foreign affairs office of the American Association of Retired People (AARP) hosted a pre-OWEGA meeting for civil society with the new Human Rights Council Independent Expert (IE) on Ageing, Dr Rosa Kornfield-Matte from Chile. Dr Kornfield-Matte, or “Rosa” as she said she preferred to be called, engaged in a formally mediated dialogue with representatives of NGOs from several countries. Her job will be to visit three countries per year and to report back to the Human Rights Council on best practice as well as on human rights violations in particular countries. Rosa made a point of saying how much she will rely on civil society groups to give her information about what is happening on the ground.

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. I am standing by to assist NGOs at the country level to coordinate this, once Dr Kornfield-Matte has decided which member states to visit.

The Latin American region is definitely leading the way on the importance of a convention on the rights of older people. The OEWGA’s very skilful chair, Mr Mateo Estrémé, is from Argentina; the delegate from Colombia made the only intervention on the problem of access to controlled opioid medicines and narcotics control as an issue; and El Salvador, Costa Rica, Brazil and Mexico all fiercely advocated over the three days for drafting a binding global instrument.

More than one speaker (including me of course!) attributed the failure to implement existing human rights law to vulnerable populations, including those that are ageing, to the lack of communication and coordination between UN Treaty Bodies and Specialized Agencies. The Independent Expert and the OEWGA push for a binding convention, could frame the cross-cutting issue of ageing in a way that will improve policy generated by the currently fragmented UN missions and their staff.

Read more on this story on the EAPC blog