Dana Elizabeth McCaffery died of whooping cough on the 9th of March at four weeks of age on the north coast of NSW, but she may the future face of social media disease advocacy in Australia.

Dana’s parents, Toni and David McCaffery launched a website and a Facebook group to highlight the risk of whooping cough and promote political and community action to protect other babies from the disease.

Whooping cough is a vaccine preventable disease that is particularly dangerous for babies in the first few months of life. They suffer uncontrollable coughing fits so severe that they cannot feed or catch their breath and the severe coughing can cause seizures and bleeding into the brain. There is currently an epidemic of whooping cough in Australia with thousands of cases being reported every month and these are likely only the tip of the iceberg.

From a social media perspective, the website both provides support to Dana’s parents and promotes their cause. Most of the 573 posts to the Facebook site are very personal as people relate their own experience with whooping cough, support vaccination, and offer their sympathy to the McCafferys, sharing how they “cried” or “wept” after reading Dana’s story.

There are over 19,000 members of Dana’s Facebook site, Mr Rudd is supposedly one of the members, the links to the website are growing and range from an Australian ex-pat in Shanghai (shanghaigingerguy.com) who is related to the McCaffererys to Byron Babe Watch (not what you are thinking — it’s a baby sitting service).

Posts to the website are rarely anti-immunisation and there is a definite backlash against anti-immunisation advocates. Incidents such as this elevate anti-immunisation advocates from interesting contrarians to Grim Reaper status overnight.

The McCaffereys advocacy agenda includes that:

  • All parents vaccinate their children
  • All adults get a booster, which governments should make free for everyone
  • If you have a cough, get tested for Pertussis to prevent the spread of the bacteria
  • All levels of government and health workers improve processes to warn the community of outbreaks of any virus or disease and precautions to take.

NSW Health has announced that free whooping cough vaccine will be available for all new parents, grandparents and any other adults who will regularly care for infants less than 12 months of age.

However, since the vaccine is not 100% effective and because many older children and adults have lost their immunity to whooping cough, there is a need to be vigilant. During the 1997 whooping cough epidemic, stickers were placed on the front of babies’ “Blue Books” on discharge from hospital, warning parents to keep their children away from anyone with a cough or cold.

However, even this provides no guarantee as people may have few symptoms in the early days of their illness while still infectious.

Ironically, the use of social media may lead to an anti-social response as we see a return to the age-old practice of cocooning newborns in the home and limiting their social contact until after they have had their first round of immunizations at two months.

The role of citizen public health advocate, while relatively new in Australia, has been prevalent in the USA since the wider availability of the web in the 1990’s. The typical advocate is inspired by a severe illness or death of their child. Parents usually believe there is something wrong with the system and they can fix it by highlighting the unnecessary death of their child and lobbying government to make change.

Organisations such as STOP — Safe Tables Our Priority grew out of the 1993 E. coli food poisoning outbreak in the USA.

While the organization now actively lobbies and influences national food safety policy in the USA through developing science based policy documents, like Dana’s web site it mixes the public and the personal, it features scrolling images of the “victims” and “survivors” of food borne disease.