World Hemophilia Day promotes Treatment for all!

The WFH’s 2006 World Hemophilia Day advocates treatment for all people with bleeding disorders.

“Treatment for all means no child born with a bleeding disorder should live with pain, disability, or the prospect of early death,” says WFH president Mark Skinner. “We’re promoting a global effort to secure appropriate care and treatment products for everyone with a bleeding disorder, no matter what their circumstances or where they live.”

Skinner says the WFH has defined hemophilia treatment in the broadest sense: “In addition to factor concentrates and medical facilities, we mean treatment to include areas such physiotherapy, information, training, diagnosis, and research for a cure.”

Treatment for all means all people with bleeding disorders should have access to safe and effective treatment until there is a cure. Meanwhile, safe products, proper diagnosis, management , and care by trained specialists should be available.

In addition to improving care in developing countries, Treatment for all also means sustaining adequate levels of care in developed countries.

To secure such treatment, advocacy plays a key role in convincing governments around the world of the need to allocate resources for the benefit of people with hemophilia and other inherited bleeding disorders.

Advocacy has proven effective in both developed and developing countries, especially when doctors’ groups combine their efforts with patient organizations. Therefore, the WFH is encouraging national hemophilia communities to work together to approach their health ministers, organize petitions, and talk to the media.

“The WFH and its supporters recently demonstrated that advocacy is also effective on the international level,” says Skinner, a Washington DC lawyer and a veteran of various successful advocacy efforts in the United States of America.

“A 15-month campaign, led by the WFH, persuaded the World Health Organization (WHO) to keep coagulation factor concentrates on its guideline list for governments of recommended essential medicines.”

The retention of factor concentrates on WHO’s Essential Medicines List has provided a lever for the WFH and hemophilia organizations to argue for improved treatment with health authorities.

A main challenge for hemophilia treatment advocates is to counter the perception amongst many authorities that hemophilia treatment is too expensive. In response, the WFH argues that even countries with limited resources can take low-cost measures to significantly improve life expectancy.

“Our research shows that government and society benefit from an investment in children’s health when, as adults, they are able to work, contribute to the community and raise a healthy family,” says Skinner.

The Treatment for all message is being reinforced by the WFH with the distribution of posters, model news releases, petition guides, and other advocacy material to hemophilia organizations and treatment centres around the globe.

World Hemophilia Day was started by the WFH in 1989. The date April 17 was chosen in honour of WFH founder Frank Schnabel, who was born on that day.

On the day, hemophilia organizations and treatment centres in more than 100 countries traditionally organize gatherings, sporting events, exhibitions, and other activities to raise awareness of the issues affecting people with hemophilia.

“Bayer HealthCare recognizes the significance of this day and is proud to be a sponsor of the activities surrounding it,” says Michael E. Mathews, vice president of Global Marketing at Bayer HealthCare Pharmaceuticals. “For many years Bayer has been working with local hemophilia organizations to develop and implement successful awareness and advocacy programs around World Hemophilia Day.”

An excellent publication for anyone seeking help with advocacy is: Making Your Case Effectively. This lobbying primer and other campaign resources are available for free on our website.

Richard Andrews
WFH Communications Officer