1 Dec is World AIDS Day – What about the children?

Sunday 1 December 2013 is World AIDS Day. As we celebrate the gains made over the years in the fight against HIV and AIDS globally, the International Children’s Palliative Care Network (ICPCN) would like to ask governments and aid agencies around the world to focus more attention on the children who continue to get a raw deal.

Statistics reveal that despite much being done to ensure people who need antiretroviral treatment receive it, access to these lifesaving drugs for children still lags far behind. This was confirmed by Leila Pakkala, the Director of the UNICEF Office in Geneva, who said:  “While there have been gains in treatment, care and support available to adults, we note that progress for children is slower.” She went on to say that: “The coverage of HIV interventions for children remain alarmingly low.”[1]

•  In 2011, according to UNAIDS, 330 000 children died of AIDS and 17.3 million lost one or both parents to the disease[2].
•  In 2012, only 34% of HIV positive children worldwide under the age 15 years received treatment for HIV compared to 64% of HIV positive adults.[3]
• In 2012, an estimated 2.1 million adolescents were living with HIV. Between 2005 and 2012, HIV-related deaths among adolescents increased by 50%, while the global number of HIV-related deaths fell by 30%. 

We believe that these figures call for serious interventions in order to realise the children’s right to health as enshrined in the Convention of the Rights of the Child.  

Disturbing perception
There is a growing and disturbing perception in the general population that due to the availability of Antiretroviral therapy (ART) palliative care is no longer needed for people who are HIV positive. However, these statistics reveal that there still remains an enormous need for palliative care for many thousands of children living with HIV. A recent study conducted by ICPCN in collaboration with UNICEF determining the need for children’s palliative care in South Africa, Kenya and Zimbabwe found HIV to be a major reason for palliative care interventions. The study quotes figures of 360 000 children in need of this type of intervention in South Africa, 171 000 in Kenya and 141 000 in Zimbabwe[4].

More than 90% of the world’s HIV positive children live in Sub-Saharan Africa, where resources are the most limited. When children with HIV do not have access to antiretroviral therapy they will experience chronic pain and will be forced to suffer many other distressing symptoms and opportune illnesses which eventually will lead to their death. These children and their families would benefit from the comprehensive approach offered by palliative care, which would include supporting the child and family in accessing the necessary ART, encouraging adherence to the treatment regimens and assisting the family in seeking welfare support where this is indicated.   

Urgent need for children’s palliative care
Palliative care is individualised to the specific needs of a child and the care given is includes the treatment of physical, emotional, social and spiritual needs of the child as well as the child’s family. It also provides support at the end of life which goes on into the time of bereavement for as long as it is needed. Where resources allow, the care is given by a team of trained professionals and people that could include doctors, nurses, social workers, psychologists, teachers and various therapists such as music, play and occupational therapists.   In less resourced countries, palliative care is seldom provided in a purpose built hospice and is more often provided in the child’s own home.

Call to action
To end unnecessary suffering and agonising deaths in children with HIV and AIDS, the ICPCN calls on all countries to:

• include palliative care training to nurses, doctors, social workers, psychologist, teachers, and all other allied health care providers who come into contact with children who are HIV+
• provide funding and resources for palliative care teams at all hospitals and clinics where children with HIV are seen

Read more about children’s palliative care on the International Children’s edition of ehospice. 

[4] Assessment of the need for Palliative Care for Children. Three Country report: South Africa, Kenya and Zimbabwe. www.icpn.org