How Media can help in reducing stigma in sickle cell disease

By

Ssebandeke Ashiraf

Country Rep. African Sickle cell News and World Report Magazine- NigeriaUganda Rep. Sicklecell Warrior Inc. USASicklecell Network Uganda

Email: askamulale@gmail.com

@UgandaWarrior Come Ushraf Qome

In war, truth is said to be the first casualty. Something similar may be said for sickle cell disease and its related stigma. Dehumanisation, inaccuracy and sensationalism seem to be the media’s stock- in-trade.

Media and Sickle cell in UgandaMedia and Sickle cell in UgandaIn Uganda sickle cell has been present for long time, so

stigma in sickle cell is as old as the disease itself.

Communication media in UgandaCommunication media in UgandaNewspapersRadioTelevisionMagazinesSocial media (Facebook, Twitter, YouTube, Watpad)Community Radios (eg Voice of Luwero)

Power of the MediaPower of the Media

The ability of the media to distort public understanding of any sickle cell disease can not be under estimated.

Many cases which are covered by media are negative which portray sickle cell as a death sentence and those who are afflicted and affected end up being stigmatized.

Media vs HematologistMedia vs HematologistHematologist abide by THREE principlesConfidentialityAccuracyHonest

Media professionals abide by THREE principlesRecencyConflictClarity

The Print MediaThe Print MediaHematologists and SCD activists can increase

their chances of expressing their ideas and opinions in print if they first understand motives of the press and the work of the jobbing journalist.

A `worthy ' story and a `newsworthy ' story.

Credibility, accuracy and human relevance alone are insufficient to ensure passage into print.

The TelevisionThe Television

Competition in the world of television.

Stereotypic portrayal of sickle cell on television.

Enter into greater dialogue with television management;

Offer to act as advisor

The 4 basic types of health stories:The 4 basic types of health stories:

The scare story (e.g. ’flesh-eating bug’);

The cure story (e.g. Girl Cured of Sickle-Cell Anemia

Using Brother's Umbilical Cord’)

The money story(e.g. ‘Titanic NHS sinks after cash

cuts’)

The human interest story (e.g. ‘my struggle with

sickle cell’);

The future (Way forward)The future (Way forward)

Grow your own friendly journalist

Create a media link with media member of staff interested in health issues.

Devote a proportion of the budget to media relations.

Build your own media centreBuild your own media centre

Encouraging staff to monitor the media and contribute tapes and articles.

Four cheap pieces of equipment can transform a resource into a training centre: a tripod, a microphone, a video camera, and a television.

Use soaps, movies and drama Use soaps, movies and drama

Some of the movies and drama include;Awele’s Diary (Documentary of a sickler)The Family Legacy (Genotype)Dazzling Mirage – Tunde Kelani (Developed from a book – Dazzling Mirage)To all my friends at the shore – Bill Cosby (Hollywood movie)

A better understanding of innate capacity to communicate in symbolic and narrative terms is

becoming crucial to sickle cell and fighting the stigma. The role of the media in this process is an issue that we

cannot afford to ignore.

What has the power to heal has the power to destroy