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WE'RE STILL HERE! Campaign

Region

Global

Programme Summary

Post-Polio Health International (PHI) is a United-States-based non-profit organisation using education, advocacy, research, and networking in an effort to enhance the lives and independence of polio survivors and home ventilator users. In October 2007, PHI launched a campaign with the goal of inspiring polio survivors in every country, state/province and city/town, in the world to write a "Letter to the Editor" or an "Op-Ed" newspaper item, or to participate in a radio, television (TV), or internet interview or blog. The purpose of this participatory media effort was to call for support and assistance to those people worldwide who are struggling with post-polio syndrome (characterised by unaccustomed fatigue, new muscle weakness, joint or muscle pain, and difficulty sleeping, breathing, and swallowing - click here for additional details from the National Institute of Neurological Disorders and Stroke (NINDS). Organisers also seek to encourage those in a position to help to do everything possible to eradicate polio wherever it exists in the world. PHI is planning the same campaign in 2008. The dates are October 12-18 2008.

Communication Strategies

This advocacy initiative involved use of information and communication technology (ICT) to inspire and enable polio survivors to speak out through the media about their experiences, and to advocate for others who may be affected by the disease. Communication is being used here to draw attention to a potentially forgotten group by amplifying their voices. The message is nuanced, in that survivors intended to convey the fact that they are capable of living vibrant, independent lives - i.e. that they are actively contributing to society by working as executives, scholars, teachers, labourers, writers, health professionals, etc.; attending schools and universities; retired but volunteering; anchoring families - but that efforts to enhance these opportunities need to be stepped up. Thus, survivors hoped to spark greater access to education, employment, transportation, and medical care (including rehabilitation and re-rehabilitation). In addition, they asked for support of the worldwide poliovirus eradication effort, insisting that the appropriate agencies and governments maintain appropriate vaccination rates.

PHI sought to facilitate these efforts to speak out through various resources offered on a dedicated page on its website. Visitors to this page may access tools such as several sample "Letters to the Editor" - which vary in tone but all stress the reason(s) why there is still a need for polio information (including both the situation with the late effects of polio and the necessity for poliovirus eradication and continued vaccination efforts). In addition, facts about polio, talking points, and ideas for ways to spread the word (e.g., through lectures and book signing). Various activities undertaken by groups around the world as part of this campaign are detailed here.

Development Issues

Health, Immunisation and Vaccines, Ageing.

Key Points

According to PHI, there are an estimated 20 million survivors of polio worldwide, including up to 1 million in the United States. As they age, they may experience symptoms associated with post-polio syndrome. "We're still here, and more than ever, we need access to healthcare professionals who recognize the uniqueness of our conditions and how to treat them," in the words of PHI President Lawrence C. Becker (himself a polio survivor). Concerned that there are still polio outbreaks in Afghanistan, India, Nigeria, and Pakistan, PHI argues that, "as new cases of polio are discovered around the world, we need to remain vigilant not only to eliminate this disease but also to continually find new treatments to minimize its long-term effects."

Contact

Joan L. Headley
Executive Director
Post-Polio Health International (PHI)

4207 Lindell Blvd., #110

Saint Louis MO
63108-2930
United States
Tel: 314 534 0475
Fax: 314 534 5070

Source

September 27 2007 PHI Press Release [PDF]; campaign page on the PHI website; and NINDS website. Email from Joan L. Headley to The Communication Initiative on February 12 2008.


Placed on the Communication Initiative site December 14 2007
Last Updated February 12 2008

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