Hemophilia - The way I see it...
In 1828 when Hemophilia got its name, no one knew how many people were affected, how far it would stretch, how it was contracted or how it would spread. It was primarily known by its visible impacts and the pain experienced from uncontrolled internal bleeding.
Through the years, it has taken hundreds of dedicated researchers, physicians, nurses, parents, patients, and caregivers to make a difference. It has taken thousands of painful bleeds, tens of thousands of days, hundreds of thousands of hours, and millions of donors of blood to affect change for our community.
Just 40 years ago, hemophilia was frequently referred to as the "crippling disease" with a shortened lifespan, and today it is a manageable disorder with a strong support network. We have Comprehensive Treatment Centers, ongoing research for advanced therapies, the potential of a cure, essential policy initiatives, and practical and emotional support.
Hemophilia is still a rare disorder. It is still challenging to navigate. Even with all of the mechanisms in place to provide security for living, safety for treatment, and sustainable access to therapy, there are still many challenges and unanswered questions. Yet today, many third-world countries have limited or NO access to treatment. There are some amazing organizations such as Save One Life who provide treatment where there are none and support for individuals who have no hope. Other groups like the World Hemophilia Federation continue to work hard with governments to open treatment centers for sustainable therapy to address the overwhelming needs for diagnosis and emergency treatments worldwide.
Hemophilia is not a disorder that has been conquered. Many people are suffering around the world that have no access to medication due to high-cost drugs and expensive treatment. The WHF has identified over 300,000 people worldwide with a bleeding disorder; however, only a fraction of those are treated regularly.
According to NIH, any disease with fewer than 200,000 people diagnosed is classified as a rare disorder. The CDC still estimates that roughly 20,000 people in the United States have been diagnosed with Hemophilia; however, according to national registries, only a fraction of those have been identified, making this community VERY rare.
Even in the United States, where medications are readily available, and Hemophilia Treatment Centers are strong, extreme conditions continue to challenge people living with Hemophilia. Thousands of people live in financial turmoil and are vulnerable to losing access to their medications, housing, and other vital needs. Living conditions vary in high contrast throughout the United States, and we continue to see homelessness (or near homelessness) as a more common occurrence than in the general public. Mental health awareness continues to be an essential issue as people work through the challenges of maintaining access to care, navigating discrimination, and managing pain.
We have a long way to go, but we have come so far. Our early mortality rate continues to decrease as we now have access to safe treatment and the reduction of co-morbidities. Many people have access to government-subsidized insurance or private insurance and no longer have lifetime caps or pre-existing conditions to avoid. We have thousands of people who are now living whole and healthy lifestyles with little or no joint disease thanks to preventative treatment regimens. We can now be secure that normal life-expectancy is possible, and the proof is found in our aging population.
There are many things to celebrate, and while the suffering to get here has been great, the fact that we can survive with a certain quality of life is a dream that was dreamt for the first time only a generation ago. If it were not for the great sacrifice of many who have come before us, and the continued investment into the future many are making now, we would not be where we have been, nor go where we are going.
Today, April 17th, on World Hemophilia Day, we celebrate where we have come from, remember those who sacrificed for our benefit, and continue to invest in our tomorrow as we look forward to a future without the trials and struggles we have experienced thus far. We have much to be grateful for, and we continue to look forward to HOPE.
Happy World Hemophilia Day
Jonathan James - Hemophilia A, Severe