Wilson Disease, a rare, genetic disorder,
hampers the body's ability to eliminate copper, leading to serious
health issues. Cuvrior® (trientine tetrahydrochloride) is the only
FDA-approved treatment in nearly 30 years.
FORT
LAUDERDALE, Fla., Aug. 19,
2024 /PRNewswire/ -- This special episode of
Behind the Mystery features insightful discussions with a dedicated
physician, an advocacy leader, and a CEO whose company has
pioneered the first FDA approved treatment for Wilson Disease in
nearly 30 years.
Mandy, diagnosed with Wilson Disease at a young age, shares her
journey living with the condition on the show, addressing the
challenges faced by patients in managing their treatment regimens
and the need for more convenient options. In addition, Hepatologist
Dr. Cheung delves into the complexities of Wilson Disease,
including its genetic origins, symptoms, and the critical
importance of early diagnosis, management, and adherence to
treatment.
"I'm proud to be part of the 'Behind the Mystery' team, where we
use our platform to raise awareness for the rare disease community.
Our series underscored the immense challenges faced by patients, as
well as the dedication of physicians, the pharmaceutical industry,
and advocacy leaders to provide meaningful solutions to the
community," said Senior Writer and Producer of Behind the Mystery,
Brittany Cocilova. Our latest
episode highlights Orphalan's commitment to developing the only
FDA-approved therapy for Wilson Disease in nearly 30 years,
showcasing the continued efforts to help patients living with and
managing their rare disease.
Hosts Montel Williams and
Olga Villaverde spotlight the Wilson
Disease Association's (WDA) efforts to support patients, improve
awareness, and facilitate access to 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.
"Orphalan has a tremendous commitment to educating not only the
Wilson Disease community and the general public, but also
physicians," says Rhonda Rowland,
Vice President of Wilson Disease Association. "We've seen a
partnership evolve between advocacy and the pharmaceutical industry
which enables an open line of communication addressing the
unmet needs in our community."
Dr. Naseem Amin, CEO of Orphalan,
details how Orphalan is addressing unmet needs in the patient
community and emphasizes the importance of empathy in the
pharmaceutical industry. CUVRIOR®, a treatment marketed by
Orphalan, offers a twice-daily dosing and is a 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 on the
website. By sharing these intimate narratives, the series aims to
educate the public, inspire empathy, and advocate for better
research, treatments, and support systems.
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 AdverseEventReporting@orphalan.com or FDA at
1-800-FDA-1088 or www.fda.gov/ medwatch.
Please see full Prescribing Information at:
https://www.cuvrior.com/wp-content/uploads/2024/02/US-ORPH-CUVR-24014-CUVRIOR-PI-FINAL.pdf
About Behind the Mystery:
Behind the Mystery™ is the first and only television series
dedicated to raising awareness about rare and genetic diseases
through powerful patient storytelling. Each episode delves into the
personal journeys of individuals and families affected by these
conditions, highlighting their struggles, triumphs, and daily
realities. By sharing these intimate narratives, the series aims to
educate the public, inspire empathy, and advocate for better
research, treatments, and support systems. Behind the Mystery not
only sheds light on the medical aspects of rare diseases but also
celebrates the resilience and strength of the human spirit. Join us
weekday mornings on Lifetime®.
About Orphalan
Orphalan is an international orphan drug development and
commercialization company headquartered in Paris. Founded in 2011, the company develops
innovative therapies for people living with rare and debilitating
diseases. Our trientine tetrahydrochloride product for the
treatment of Wilson disease is approved and available in more than
20 countries, branded as CUPRIOR® in EU, the UK, Saudi Arabia, Switzerland, Columbia and China, and as CUVRIOR® in the United States. For more information visit
www.orphalan.com and follow us on LinkedIn.
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SOURCE Behind The Mystery