People who are ill or disabled have special needs and rights. Health advocacy means informing, supporting and promoting the rights of health service consumers. In 1996 an independent national patient advocacy service was established. The National Advocacy Trust is contracted to provide this service by the Office of the Health and Disability Commissioner. It has community-based offices throughout the country. Other non-governmental organisations, often charitable trusts, also advocate on behalf of people with specific health conditions.
Since the 19th century there have been a number of non-profit organisations which focus on a particular illness, geographical area or ethnic group. Their interests range from disability and mental health to gender issues, specific diseases and genetic disorders. Many of the best known ones focus on the health of children. Examples are the Child Cancer Foundation and Plunket – a charitable trust that focuses on the health and welfare of children under five years.
Their services include arranging social gatherings and camps, funding medical research, providing fieldworkers to help patients with day-to-day needs, and providing free medical services.
Some people get together to manage their own health rather than relying on doctors alone. Alternative health therapies and remedies are forms of self-help which became popular in the 1980s. In the early 21st century many people used the internet to find specific information about health issues and diseases.
Advocacy and self-help organisations often seek to change public opinion and government policy. This sometimes involves high-profile campaigns.
In 1987 Women’s Health Action brought the country’s attention to failures in the treatment of cervical cancer at National Women’s Hospital in Auckland. This eventually contributed to more rights and better treatment for all patients, including the establishment of the Nationwide Health and Advocacy Service.
In the early 2000s Plunket and other children’s charities spoke out in support of a law change which meant that parents could no longer use the defence of ‘reasonable force’ if taken to court for harming their children. An amendment to Section 59 of the Crimes Act in 2007 made it clear that nothing justified the use of force for the correction or discipline of children.
Campaigns by health advocacy organisations for funding for new drugs occurred in the 21st century. Consumer-based breast cancer advocacy groups lobbied strongly for funding for year-long Herceptin (transtuzumab) treatment for metastatic HER2 positive breast cancer. The Pharmaceutical Management Agency (PHARMAC), the national drug purchasing agency, initially only funded this drug treatment for nine weeks. In 2008 following significant lobbying by the Breast Cancer Aotearoa Coalition (BRAC) and other organisations, the government decided to fund 12- month Herceptin programmes for women with metastatic HER2 positive breast cancer through the Ministry of Health.