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Ivan was diagnosed with severe hemophilia A at two days old, when doctors noticed that his feet were bruised and bleeding. At the time, his parents were not aware of any family history of bleeding disorders. But he did have an uncle who had died at age seven. Looking back, it seems to fit that he died from a bleed associated with a serious injury. Since Ivan's birth, two cousins have also been diagnosed with severe hemophilia. But hemophilia is not the only thing that runs in his family. “Baseball is in my blood. I come from a long line of baseball players – father, grandfather, uncle, brother. So I always played – there was really never any question about it.” Despite his diagnosis, Ivan played baseball throughout his childhood and teen years, even playing semi–pro for two years. Today, in addition to his job as a general contractor, work as an Octapharma Patient Educator, and activities as a busy parent, he coaches teams and runs baseball clinics for youths with bleeding disorders. “I can't get enough.”
Ivan attributes much of his can–do attitude to what he learned from his parents. “I came up in a time when involvement in sports was just not part of the program for kids with hemophilia.” But his parents were different, always encouraging him to play and to pursue what he loved. “Sure, my mom watched games with her eyes closed. And we spent many hours in the ER after sports–related injuries. But nothing could keep me off the field.” Similarly, in his social life, Ivan always felt like just one of the guys. He was very open about his hemophilia, infused in front of his friends, and maintained a large social network and support system. “Some kids, especially teenagers, worry about being different – being made fun of or being bullied. But not me. Yes, I walk with a limp because of damage to my ankle from hemophilia. I always say, ‘That's just how I walk.’” Ivan has carried this positive attitude into adulthood. “Today I tell parents who worry about the safety of their children that ‘kids will be kids’. When they fall, they'll get up. They're going to get cuts and bruises. But they'll also learn how to take care of themselves. They'll become independent. And they'll have fun.”
Like many people with bleeding disorders treated from an early age, Ivan received on–demand infusions at a Hemophilia Treatment Center. “I have had the same nurse my whole life, up until she recently retired. She was a great resource for me and taught me how to self–infuse.” At age 12 he began prophylactic treatment, supplementing with on–demand infusion as needed. And he began treatment at home with self–infusion, with his mom playing shortstop. “My mom ordered all my meds, kept track of my schedule for infusions and appointments, and basically handled everything for me.” When Ivan entered high school, he received a scholarship that took him far from home. Now he had to assume responsibility for managing his treatment. “You can't just run home. I learned to keep track of my factor and my infusion schedule for myself. I always had my contacts at the ready in case I needed help. I was very motivated not to miss a treatment because I always wanted to be back on the baseball diamond.”
Ivan has been on two different factor therapies; on NUWIQ® for the last four years. “On my previous product, I was on an ‘every other day’ regimen. After switching to NUWIQ, I was able to reduce my dosing frequency significantly. So NUWIQ has been perfect for me.” Ivan also did his efficacy research. “If you have hemophilia, you're going to get bleeds. You want the drug that will get you back on your feet fastest. Through my research, I learned that even one on–demand infusion of NUWIQ after an injury could be very effective at resolving a bleed.” His treatment regimen with NUWIQ has been extremely successful. “I don't want to jinx it, but I can't even remember the last time I had a bleed, it's been so long.”
“I have met great people all over the country as a Patient Educator for Octapharma. But I especially love reaching out to the Hispanic community.” Ivan believes that there is a need to get beyond a language barrier, and that resources and support available in Spanish are much appreciated. “That's why I do presentations in Spanish. I want everyone to get the information they need. And to feel connected.”
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Indications and Important Safety Information for NUWIQ® [Antihemophilic Factor (Recombinant)].
Please see NUWIQ full Prescribing Information. Instructions For Use
Indications and Usage
NUWIQ® is a recombinant antihemophilic factor [coagulation factor VIII (Factor VIII)] indicated in adults and children with Hemophilia A for on-demand treatment and control of bleeding episodes, perioperative management of bleeding, and routine prophylaxis to reduce the frequency of bleeding episodes. NUWIQ® is not indicated for the treatment of von Willebrand Disease.
Contraindications
NUWIQ is contraindicated in patients who have manifested life-threatening hypersensitivity reactions, including anaphylaxis, to the product or its components.
Warnings and Precautions
Hypersensitivity reactions, including anaphylaxis, are possible with NUWIQ. Early signs of hypersensitivity reactions that can progress to anaphylaxis may include angioedema, chest tightness, dyspnea, wheezing, urticaria, or pruritus. Immediately discontinue administration and initiate appropriate treatment if hypersensitivity reactions occur.
The formation of neutralizing antibodies (inhibitors) to Factor VIII can occur following the administration of NUWIQ. Monitor all patients for the development of Factor VIII inhibitors by appropriate clinical observations and laboratory tests. If the plasma Factor VIII level fails to increase as expected, or if bleeding is not controlled after NUWIQ administration, suspect the presence of an inhibitor (neutralizing antibody).
Adverse Reactions
The most frequently occurring adverse reactions (>0.5%) in clinical trials were paresthesia, headache, injection site inflammation, injection site pain, non-neutralizing anti-Factor VIII antibody formation, back pain, vertigo, and dry mouth.
Please see NUWIQ full Prescribing Information. Instructions For Use
Indications and Important Safety Information for wilate® [von Willebrand Factor/Coagulation Factor VIII Complex (Human)].
Please see wilate full Prescribing Information.
Indications
wilate® is a von Willebrand Factor/Coagulation Factor VIII Complex (Human) indicated in children and adults with von Willebrand disease for on-demand treatment and control of bleeding episodes and for perioperative management of bleeding. wilate is also indicated in adolescents and adults with hemophilia A for routine prophylaxis to reduce the frequency of bleeding episodes; and for on-demand treatment and control of bleeding episodes.
Contraindications
wilate® is contraindicated in patients with known hypersensitivity reactions, including anaphylactic or severe systemic reactions, to human plasma-derived products, any ingredient in the formulation, or components of the container.
Warnings and Precautions
Hypersensitivity Reactions
Hypersensitivity reactions may occur with wilate®. Signs and symptoms include angioedema, burning and stinging at the infusion site, chills, flushing, generalized urticaria, headache, hives, hypotension, lethargy, nausea, restlessness, tachycardia, tightness of the chest, tingling, vomiting, and wheezing that may progress to severe anaphylaxis (including shock) with or without fever. Closely monitor patients receiving wilate® and observe for any symptoms throughout the infusion period.
Because inhibitor antibodies may occur concomitantly with anaphylactic reactions, evaluate patients experiencing an anaphylactic reaction for the presence of inhibitors
Neutralizing Antibodies
VWD
Hemophilia A
Transmissible Infectious Agents
wilate® is made from human plasma. Because this product is made from human blood, it may carry a risk of transmitting infectious agents, e.g., viruses, and theoretically, the variant Creutzfeldt-Jakob disease (vCJD) agent. There is also the possibility that unknown infectious agents may be present in the product. The risk that wilate® will transmit viruses has been reduced by screening plasma donors for prior exposure to certain viruses, by testing for the presence of certain current virus infections, and by inactivating and removing certain viruses during manufacture. Despite these measures, it may still potentially transmit disease.
Record the batch number of the product every time wilate® is administered to a patient, and consider appropriate vaccination (against hepatitis A and B virus) of patients in regular/repeated receipt of wilate®. ALL infections thought by a physician possibly to have been transmitted by this product should be reported by the physician or other healthcare provider to Octapharma USA, Inc., at 1-866-766-4860.
Monitoring and Laboratory Tests
Adverse Reactions
The most common adverse reactions to treatment with wilate (≥ 1%) in patients with VWD were hypersensitivity reactions, urticaria, and dizziness. The most common adverse reactions to treatment with wilate (≥ 1%) in previously treated patients with hemophilia A was pyrexia (fever).
Please see wilate full Prescribing Information.
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