World Hemophilia Day, April 17, was celebrated globally on Friday! It’s a time when our community converges to give support, but even more importantly, to promote public awareness of the “royal disease” so that people can be diagnosed and appreciate the needs of those with bleeding disorders. In fact, the theme of this year is diagnosis.
Diagnosis is a key first step to proper treatment. But globally, most people who have bleeding disorders are in developing countries and most go undiagnosed. Diagnosing them is the goal, but that unintentionally creates more problems. The main problem? Lack of clotting factor concentrates with which to treat them.
While our community typically wears red on April 17 to signify blood and our unity by blood, I decided years ago to wear white. Why white?
A widely used hemophilia logo has featured a red and white person standing together in unity. The red represents those with access to factor; the white, those without. And that’s why I wear white. To represent the people I serve most, in developing countries where little to no factor exists, or where donations of factor are not a consistent or sure thing.
While I raised a child with hemophilia, I provided books and newsletters to educate those in the US about hemophilia, and how to access the care they needed. Now, I devote all my time to helping those in developing countries, the “white” part of the logo. One way I do this is to provide funding for surgeries. Untreated bleeding can lead to a deterioration of joints; blood is acidic and eats away at cartilage, leaving a person with arthritis. A new knee can mean a new life to someone in a developing country with a bleeding disorder.
Here is Bommaiah, who received a new knee, with our funding and help from the Chennai, India, Chapter of the Hemophilia Federation (India). That’s my best celebration of World Hemophilia Day yet!
5 thoughts on “Diagnosing the “Whites””
I wish I knew about the “wear white” idea sooner. I would have celebrated the day for once. We have all of March as bleeding disorders awareness month. To celebrate another awareness day without a clear purpose feels entitled. What good are we doing for others with all of this “awareness”? The science of treatment has made amazing progress in my lifetime. But what does it mean if there are still so many here and in other countries who lack a proper diagnosis and access to those amazing treatments? I say let’s do more to promote “wear white” if we can use it to get more care for those who need it.
White on! (I couldn’t resist) A lot of money is spent on awareness without clear analysis of what impact it has. And yet we do need public awareness. Diagnosing is important but the main problem comes with increasing the number of patients without having available treatment, which is happening right now. Shortages of FIX and inhibitor donations globally. However, increased number of patients through diagnosis is a requirement to show governments that they need to step in to support their patients. So it’s a double-edge sword.
My son is now 37. I do not know what we would have done without the help of Hemophilia of Georgia and your support Laurrie. The Hemophilia handbook was on my coffee table until my son married and left home. Hemophilia of Georgia works so hard with grants, government, fundraisers& Emory University hospital in research trying to assist hemophiliacs with care & cure. Insurance is the BIGGEST hurdle & lack of for bleeding disorders especially hemophilia which leads to all kinds of health issues. I even made a trip to Washington with my son thru Hemophilia of Ga. to meet with politicians about importance of insurance and the dangers of hemophilia. The specific politicians we targeted to speak with knew nothing about hemophilia or the dangers of injuries and non-treatment. I totally agree with you about awareness. Thank you for all you do Laurie Kelley in books you have written and support in 3rd world countries where treatment is not always available and ALL you do!
Thanks, Sharon! And don’t forget HOG volunteered to ship millions of units of factor for the World Federation of Hemophilia annually to those in developing nations for years. It’s amazing what we can all do when we act together!
I agree raising awareness by itself isn’t enough. It’s a tool, and if not used to accomplish a goal like removing barriers to care it’s just expending our limited time and money without realizing a benefit. For example, when we have Albany Days, we have a public awareness display to raise our profile with policymakers, and at the same time we’re meeting their offices with specific policy asks, like the ability to see out-of-network providers or reduce prior auth burdens on patients and centers. The awareness raising directly supports achieving the policy changes. Is it glamorous? Nope. But it is making things a little better for people and the community in a meaningful way.