Honoring Bleeding Disorders Awareness Month

Mar 14, 2019 | Patient Blog

It’s bleeding disorders awareness month. At Patient Services Inc., it’s a month where we not only honor some amazing and courageous heroes within the bleeding disorders community, but also honor our own beginnings.

Our founder, Dana Kuhn, Ph.D., knew the pain firsthand of watching a loved one fight-and-lose their battle against chronic illness; he knows, too, the crippling financial burden often carried by those left behind. From this, Dr. Kuhn shaped the very first non-profit patient assistance model in 1989.

In The Beginning

It was 1983 when then, 30 year old Dana Kuhn was a pastor in Tennessee. That year, Kuhn had broken his foot, having mild Hemophilia, that was the first time he got blood clotting factor. From this single transfusion, which was HIV and Hepatitis C tainted, life would never be the same again for Dana.

Now with virus, inadvertently, it was then passed onto his wife. It would be four years later that she would be gone from AIDS, leaving him alone with two kids and questioning, “Why me, God?”

A New Calling.. A New Mission

Eventually leaving the large church Dana had been ministering, Kuhn took a job at the Medical College of Virginia in Richmond, VA counseling families affected by chronic illness. By 1989, Dr. Kuhn would launch Patient Services, Inc. For Kuhn, this was his new calling, from leading a community of parishoners, to now, leading the charge to find solutions to the challenges that face the chronically ill in the United States.

Since 1989, PSI has had the opportunity to come alongside to encourage, support, and advocate for many incredible people from within the bleeding disorders community. Here just a few of their stories.

Meet Steve

“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.” Told us in a recent letter he had sent to us about his story.

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.”

You can read more about Steve, here.

Meet Felix

Born with Hemophilia and then given tainted blood in the 1980’s, Felix now also has Hepatitis C and HIV. For Felix and countless others who contracted the disease well before it’s discovery, it has been a long journey.

Felix would tell us for a story we recently did on his journey, “In 1985, shortly after my 11th birthday, my parents received notification that I was both Hepatitis C positive, and HIV positive (at the time that was like a death sentence). After sitting with several doctors, they decided not to even worry about my Hep C. After all HIV disease led to AIDS and AIDS led to death. I would never live long enough to worry about Hepatitis C or my liver, after all Hepatitis C takes years to really do any damage.”

Of course, that was then, this is today, 2019. Felix continued, “I support PSI today, because they were there for me. We fast forwarded through a lot, including the time I lost my job and couldn’t pay for my insurance. My Hemophilia treatments cost thousands of dollars each. The internal bleeding that would have occurred without treatment, could have tripled the amount I needed and left that bill on the local county hospital. I didn’t want that.

Thanks to PSI, I could maintain my coverage through Cobra. That meant my medication was taken at home, I was well enough to look for work to get back on my feet, and I was not a crippled burden to society. PSI gave me a chance to be a productive part of society instead. PSI also shifted my focus. You see, thanks to their help with my premium, I wasn’t dealing with stress bleeds, and spending my days worried about simple daily activities causing internal bleeding. Instead I was focusing on getting back to work, and raising a family with limited resources during that time.”

You can read more about Felix, here.

Thank You Dr. Kuhn!

In this Bleeding Disorders Awareness Month, we thank retired founder Dana Kuhn for heeding the call. For finding the courage from the depths of despair to rise up and march forward on a new mission that all these years later, has changed the lives of so many people both within the bleeding disorders community, but also the chronically ill and rare disease communities as well. Today, we carry on the vision of that which Dr. Kuhn first saw when he launched PSI back in 1989 on the backdrop of his own personal experience.

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