Behind The Mystery Reveals Wilson Disease Treatment with Cuviror® by Orphalan

23 August 2024
Wilson Disease, a rare genetic disorder, disrupts the body's ability to remove excess copper, leading to severe health issues. Cuvrior® (trientine tetrahydrochloride) has recently emerged as the first FDA-approved treatment for this condition in nearly three decades. This breakthrough was highlighted in a special episode of "Behind the Mystery," featuring conversations with a physician, an advocacy leader, and the CEO of the pioneering pharmaceutical company.

Mandy, who was diagnosed with Wilson Disease early in life, shared her personal experiences on the show. She discussed the various challenges faced by patients in adhering to treatment regimens and the urgent need for more convenient treatment options. Hepatologist Dr. Cheung also contributed to the discussion, providing insights into the genetic origins, symptoms, and complexities of Wilson Disease. He emphasized the critical importance of early diagnosis, ongoing management, and consistent treatment adherence.

Senior Writer and Producer of "Behind the Mystery," Brittany Cocilova, expressed pride in using the platform to raise awareness about rare diseases. She highlighted the significant challenges patients face and noted the dedication of healthcare professionals, the pharmaceutical industry, and advocacy groups in offering meaningful solutions to the rare disease community. The episode underscored Orphalan's commitment to developing CUVRIOR®, showcasing the company's effort to aid patients managing Wilson Disease.

Hosts Montel Williams and Olga Villaverde spotlighted the efforts of the Wilson Disease Association (WDA) in supporting patients, improving awareness, and facilitating access to new developments. Rhonda Rowland, Vice President of the WDA, discussed the progression of treatment options and the organization's role in fostering partnerships among patients, doctors, and the pharmaceutical industry. Rowland acknowledged the evolving partnership between advocacy groups and the pharmaceutical industry, which ensures an open line of communication to address the unmet needs within the Wilson Disease community.

Dr. Naseem Amin, CEO of Orphalan, elaborated on the company's dedication to meeting the needs of the patient community. He stressed the importance of empathy within the pharmaceutical industry and highlighted that CUVRIOR® offers a twice-daily, non-refrigerated option for long-term maintenance therapy for Wilson Disease.

"Behind the Mystery - Wilson Disease" will air on Lifetime on August 19th and August 27th at 7:30 AM ET/PT and will remain available on the show's website. By sharing these personal stories, the series aims to educate the public, inspire empathy, and advocate for enhanced research, treatments, and support systems.

CUVRIOR® is a copper chelator indicated for adult patients with stable Wilson Disease who are de-coppered and tolerant to penicillamine. The drug's side effects include abdominal pain, changes in bowel habits, rash, hair loss (alopecia), and mood swings. Patients are advised to take CUVRIOR® at least one hour apart from other oral medications and to avoid mineral supplements during the treatment. Close monitoring by a healthcare professional is necessary to manage potential side effects such as copper or iron deficiency.

"Behind the Mystery" is a television series dedicated to raising awareness about rare and genetic diseases through compelling patient stories. Each episode explores the personal journeys of individuals and families affected by these conditions, aiming to educate the public, inspire empathy, and advocate for better research, treatment options, and support systems. The series not only discusses the medical aspects of rare diseases but also celebrates the resilience and strength of those affected.

Orphalan, an international company based in Paris, was founded in 2011 to develop innovative therapies for rare and debilitating diseases. Their product for treating Wilson Disease, branded as CUPRIOR® in several countries and as CUVRIOR® in the United States, is now approved and available in over 20 countries.

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