Behind the Mystery of Wilson Disease: An inherited condition impacting liver, brain & other organs

This special edition of The Balancing Act presents: Behind the Mystery of Wilson Disease features insightful discussions with a dedicated physician, an advocacy leader, and a CEO whose company has pioneered the first advancement in treatment for Wilson Disease since 1997.
Mandy was diagnosed with Wilson Disease at a young age and shares her journey living with the condition. Her experience highlights the challenges faced by patients in managing their treatment regimens and the need for more convenient options. Hepatologist Dr. Cheung further explains the complexities of Wilson Disease, including its genetic origins, symptoms, and the critical importance of early diagnosis, management, and adherence to treatment.
Olga & Montel spotlight the Wilson Disease Association’s (WDA) efforts to support patients, improve awareness, and facilitate access to new developments. Rhonda Rowland, VP of the WDA discusses the evolution of treatment options and the organization’s role in fostering partnerships between patients, physicians, and the pharmaceutical industry.
Dr. Naseem Amin, CEO of Orphalan, describes how Orphalan is addressing the unmet needs in the patient community and emphasizes the importance of empathy in the pharmaceutical industry. Cuvrior is an innovative treatment introduced by Orphalan, which offers a convenient, twice daily dosing, and is a non-refrigerated option for long term maintenance therapy for Wilson Disease.
Disclaimer.
Patients should be aware that their Wilson Disease symptoms could get worse when they start treatment because too much copper is removed in a short time. In addition, some patients can develop copper or iron deficiency and patients should have tests done by their doctor to monitor these levels and adjust the dose of CUVRIOR as necessary. Also, allergic reactions, such as rash, can occur. Patients should not take CUVRIOR if they are allergic to trientine or any other ingredient in CUVRIOR. The most common side effects are pain in the abdomen, change in bowel habits, rash, hair loss, and mood swings.
INDICATION
CUVRIOR is a copper chelator indicated for the treatment of adult patients with stable Wilson Disease who are de-coppered and tolerant to penicillamine.
IMPORTANT SAFETY INFORMATION
Do not use CUVRIOR if you are allergic to trientine or to any of the ingredients in CUVRIOR.
Your Wilson’s Disease symptoms could get worse when you start treatment. This could happen because too much copper is removed from the body in a short period of time. Your doctor may need to reduce your dose or stop CUVRIOR treatment.
Copper deficiency may develop following treatment with CUVRIOR. Your doctor will do tests to monitor your urine and blood for copper.
Iron deficiency may develop while taking CUVRIOR. If this happens, your doctor may tell you to take iron supplements for a limited time.
Allergic reactions, such as a rash, have been reported with trientine, the active ingredient in CUVRIOR. If a rash or other allergic reaction occurs, stop taking CUVRIOR and get emergency medical help.
The most common side effects are pain in the abdomen, change in bowel habits, rash, hair loss (alopecia), and mood swings.
Take CUVRIOR at least 1 hour apart from any other oral medicine. Tell your doctor about all the medicines you’re taking, including over-the-counter medicines, vitamins, and herbal supplements. Avoid taking supplements when taking CUVRIOR. Taking CUVRIOR with mineral supplements (e.g., iron, zinc, calcium, magnesium) can reduce the effectiveness of CUVRIOR. If iron supplementation is necessary, take CUVRIOR at least 2 hours before or 2 hours after taking iron; for other mineral supplements (e.g., zinc, calcium, magnesium), take CUVRIOR at least 1 hour before or 2 hours after. Do not start or stop any medicines while taking CUVRIOR without talking to your doctor.
These are not all the possible side effects of CUVRIOR. You are encouraged to report negative side effects of prescription drugs. Contact Orphalan at 1-800-961-8320 or [e-mail] or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
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