Letter: Bleeding disorders in spotlight this month
Author: Colorado Politics - March 26, 2016 - Updated: March 26, 2016
Every March, the National Hemophilia Foundation observes Bleeding Disorders Awareness Month to advocate and educate on behalf of the nearly 3 million Americans living with hemophilia, von Willebrand’s disease and other bleeding disorders. Supporters can participate in the “Red Tie Challenge” by uploading a photo or short video wearing a red tie and pledging their support in the fight against these diseases.
Many people don’t understand the severity of bleeding disorders. For hemophiliacs, everyday scrapes and bruises can have serious long-term consequences as internal bleeding degenerates the joints and muscles. A simple bump on the head can lead to brain damage or even death.
Since its inception over 30 years ago, the Colorado Chapter of the National Hemophilia Foundation has worked closely with the Hemophilia and Thrombosis Center at the University of Colorado Denver. This center is one of the nation’s leading research and treatment facilities for this disease group, and the pharmaceutical drug trials conducted there provide hope for people all over the world.
There may actually be a cure for bleeding diseases in the research pipeline right now. However, developing new drugs, especially those that treat rare diseases, requires immense resources. It costs an average of $2.6 billion to bring a new medication to market, but that investment saves money in the long term: every $1 spent on medicine leads to reduction in other healthcare spending. We need to maintain a marketplace that incentivizes medical innovation and encourages drug companies to find cures for bleeding disorders.
Unfortunately, treatments for bleeding disorders are often unaffordable, costing tens and even hundreds of thousands of dollars a year. The insurance and pharmaceutical industry both have a responsibility to keep costs low, to cover these life-saving medicines and to provide high quality medical care for as many people as possible.
Executive Director, National Hemophilia Foundation, Colorado Chapter
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