Hemophilia: When Life Turned Towards Hope

“I have lived with the bleeding disorder, Hemophilia B since my birth in 1952. I have seen and lived through a lot of changes since the days when my parents were warned that I might not live past the age of 20.” – Steve, Hemophilia B Patient

Within the rare disease community, there are many, who like Steve, that are living their every single day waging battle against an unknown or often times, unnamed foe. For them, strength, endurance, and courage are words that can only describe such plight. From them, we all can learn a lot about life, perspective, and so much more.

In Steve’s instance, we had no idea.

What Is Hemophilia B?

According to the National Organization for Rare Disorders (NORD), Hemophilia B, also known as factor IX deficiency or Christmas disease, is the second most common type of hemophilia. The disorder was first reported in the medical literature in 1952 in a patient with the name of Stephen Christmas.

How Many People Have Hemophilia B?

The Hemophilia Federation of America states that Hemophilia B affects 1 in 500 male births in the U.S., and approximately 100 babies are born with hemophilia B each year. Approximately 400,000 people worldwide are living with hemophilia, and about 20,000 are living with it in the United States. All races and economic groups are affected equally.

One Man’s Story Of Strength, Endurance, and Courage

In a recent open letter about recent changes made by the U.S. Department of Health and Human Services restricting some organizations from providing patient assistance programs, Steve of South Carolina shared with us his story. In this, Steve did so much more than sharing his story, he also taught us a lesson on perspective, too.

“Patient Services Incorporated (PSI) changed my life. I have lived with the bleeding disorder, Factor IX (9) Deficiency Hemophilia (Hemophilia B) since my birth in 1952. I have seen and lived through a lot of changes since the days when my parents were warned that I might not live past the age of 20.” Tell us as he began his heartfelt letter.

He continued, “The only treatment for my genetic disorder back then was to “put ice on” the area that was internally bleeding. Bleeding became more frequent, especially in “target areas” such as my right knee, both ankles, my right elbow and certain muscles and internal organs during my adolescent years. Those bleeding episodes in my younger years manifested themselves as life-long chronic pain areas and they deteriorated many of the major joints in my body. I have gone through two total knee replacements, an ankle fusion, a total elbow replacement, and chemotherapy due to contracting Hepatitis C from some tainted factor replacement products back in the early to mid-1980s.”

To say that Steve has lived a life of seemingly endless battles, is most definitely an understatement. With virtually every aspect of his life under what feels like constant attack, is there ever a glimpse of hope? Is this just how life was going to be?

Can Quality Of Life Find Hope?

At PSI, our aim is to help lead patients to positive outcomes. It was that way when we started in 1989 as the first non-profit patient assistance charity and still continues to this very day. For in this, we know all too well what it’s like to watch a loved one fight chronic illness, as well as the crippling financial burden that often times comes with it.

Steve so graciously shared with us his experience with PSI and the impact it has had on the quality of his life.

When Life Took A Turn For Hope

In his own words,

“Patient Services Incorporated has enabled me to be more productive and have a much greater quality of life in so many ways by helping make possible many things that I could only dream of when I was younger.

Thanks to medical science and remarkable research, my life took a turn for hope during my early 20’s due to a new treatment. The Factor IX necessary for the clotting process was isolated and could be reconstituted into a product that I could infuse into a vein by myself and it could be used to not only stop an active bleed but to also prevent the risk of bleeding if used in a “prophylaxis” method. This breakthrough changed the game for people with Hemophilia and some other bleeding disorders. However, this treatment did not come without an exorbitant price tag. One treatment would cost thousands of dollars. Of what use was such a tremendous discovery if the patients could not afford it? Insurance companies would turn me down and I began receiving billings for tens of thousands of dollars. Those bills were totally demoralizing and depressing to the point where my hope was once again fading. Then I found out about PSI from a family member with a similar bleeding disorder. PSI immediately reached out to me like a “knight in shining armor”. They treated me with respect and compassion right from the very first telephone contact.

PSI tackled my financial hardships and once again gave me hope. PSI allowed me to concentrate on my lifelong goals without worrying about how a genetic illness would financially take me out of the game at an early age. I still struggle. This disease isn’t just about clotting factor. Every doctor I have is a specialist and my insurance co-pays alone are becoming a burden. But, thanks to PSI, I was able to go to college, work my entire life, tour the U.S., raise a family and now teach music at a recreation center devoted to the arts in Myrtle Beach, SC. None of these things would have been possible without the help and hope that PSI gave to me. I am eternally thankful. PSI is continuing to keep my hopes alive and to also keep me alive. Because of that hope, compassion and concern I am eternally thankful to PSI.”

At PSI, Our Passion Is You

“It’s not just our job; it’s our passion.” PSI senior leadership and the Patient Services Board of Directors are dedicated to solving the challenges that confront uninsured/underinsured Americans. Our leaders are a collection of individuals with expertise in a variety of healthcare related areas.

Patient Services, Inc. (PSI) has nearly 30 years of experience helping those living with an expensive chronic illness to afford life saving treatment. If you or someone you know has recently been diagnosed with a rare disease or is affected by chronic illness, you can learn more about what we do by visiting our patients page on our website which also provides a list of our supported illnesses here.

As mentioned in Steve’s letter, you can learn more about the U.S. Department of Health and Human Services restricting some organizations from providing patient assistance programs and what you can do about it on our advocacy page by clicking here.

Thank You Steve.

In sharing his story so humbly with us, we are reminded, yet again, the incredibly heroic stature of all those we are so unbelievably grateful to come alongside of. For in this, we continually learn a lot about life, perspective, and so much more.

In Steve’s instance, like so many others, we now have an even more idea. Thank you, Steve, for sharing your story with us. As an organization, it fuels our resolve. As a person writing this article, it touches my heart.