A Family Affair
Chris' severe hemophilia A was diagnosed when he was two days old, after severe bleeding following his circumcision. “My mom came to check on me and found me sitting in a pool of blood.” It was the first known case of hemophilia in his family and came as a complete surprise. Since the initial diagnosis they have all learned a lot. Chris' mother has been found to be a carrier. His grandmother had two brothers that died before the age of 5, possibly due to bleeding disorders. His sister is a carrier, since re–diagnosed with mild hemophilia, platelet disorders, and other mutations. And Chris now has two kids of his own. His son's uncle has a mild case of hemophilia. His daughter is a carrier, so he is tackling hemophilia from a whole new angle. She has attended three hemophilia camps and loves them. “It's all in the family.”
Pushing the Envelope
Growing up, Chris always played sports. “It was a little hard to get doctors to sign off on allowing me to play baseball or other sports, but I always stayed very active. I wrestled in high school, tried bodybuilding – always pushing my body pretty hard. So, I have had a lot of bleeds.” At 17 Chris aged out of baseball and found a new favorite sport in bowling. “My doctors were happy about the bowling, since it is considered one of the safer sports.” He even bowled professionally for several years. “Bowling can be very hard on joints – wrists, shoulders, elbows, knees, and ankles. Of course, joints can also be a problem for people with hemophilia. My left ankle is my target joint. When I throw the ball, 100% of my weight is on my left ankle. I needed a treatment that would prevent joint pain and keep me healthy. In addition to my regular infusions, I always timed extra treatments around my league competitions, so that my FVIII was highest when I was bowling. That way if I twisted or rolled an ankle, I'd be protected.” Today Chris stays active with other sports he enjoys, always applying the same proactive care and caution to safeguarding his health.
Searching for the Best Solution
Chris does not remember a lot about his childhood treatments for hemophilia but does know that he was never very happy with his medication regimen until NUWIQ®. He hated infusions, has endured lots of pain, used crutches and wheelchairs – even had to learn to write with his left hand because his right hand was immobile. He tried many infusion alternatives. Some medication transitions were instigated by insurance changes, some by frequent break–through bleeding, some by persistent joint pain. One friend of his died because of an inhibitor. All this convinced Chris to look for the best product for his needs. “As an adult, my attitude has always been that I am responsible for my treatment decisions. I do my research then go in and consult closely with my doctors to achieve the best treatment outcomes.” A friend introduced him to NUWIQ and he has been on it since it came out. “It got rid of my joint pain and gave me more mobility. It's great living pain–free. I have gotten a couple of bleeds, but most of them resolve with one infusion.”
Navigating Insurance Coverage
Chris is an insurance expert. He is a certified Medical Coder and teaches Medical Billing and Coding at a career college. “When I was coming up there was not a lot of information about health insurance, so I decided I would focus on this.” He knows that managing insurance coverage can be very difficult for people with chronic conditions. “In my job, I have to know the insurers, know the terminology, and know the codes that are needed to get expenses paid. In open enrollment, I can help patients know what to look for in coverage for hemophilia in order to select the best option for their needs. It's a unique skill set.” Chris has applied this knowledge and expertise to his work as a Factor My Way Patient Educator. He gives presentations on navigating coverage and understanding the appeals process in health insurance. “In my opinion, insurance companies are getting much better today. Now they have most medications on their plans, so it is a lot easier for patients to switch medications. That's a win.”
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