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About
Everything you need to know about Wilson Disease

Treatment of Wilson disease

Wilson disease is a very treatable condition. With proper therapy, disease progress can be halted and oftentimes symptoms can be improved. Treatment is aimed at removing excess accumulated copper and preventing its reaccumulation. Treatment for Wilson disease is a lifelong process. Patients may become progressively sicker from day to day, so immediate treatment can be critical. Treatment delays may cause irreversible damage.

Chelation therapy drugs approved for treating Wilson disease include penicillamine (Cuprimine® and Depen®) and trientine (Syprine® and Trientine Dihydrochloride) Both of these drugs act by chelation or binding of copper, causing its increased urinary excretion.

Mettalothionein inducer drugs approved for treating Wilson disease are (Galzin™) in the U.S. and (Wilzin®) in Europe. Zinc acts by blocking the absorption of copper in the intestinal tract. This action both depletes accumulated copper and prevents its reaccumulation. Zinc's effectiveness has been shown by more than 30 years of considerable experience overseas. A major advantage of zinc therapy is its lack of side effects.

Patients with severe hepatitis or liver failure may require liver transplant. Patients being investigated or treated for Wilson disease should be cared for by specialists in Wilson disease or by specialists in consultation with their primary physicians. Stopping treatment completely will result in death, sometimes as quickly as within three months. Decreasing dosage of medications also can result in unnecessary disease progression.

Taking your medicine as prescribed is extremely critical to the success of Wilson disease treatment. One of the advantages of having WD is that it is VERY treatable with effective, safe medications leading to a normal life expectancy . . . IF . . . you faithfully take your medications, as prescribed, LIFELONG. There are varying reasons for non-adherence in patients with WD and your physician has probably heard them all. Adherence is especially difficult in patients who were asymptomatic as diagnosis. These patients often do not see a cause and effect relationship.

To Purchase

Cuprimine® or Syprine® in the U.S., contact Valeant Pharmaceuticals North America LLC. at 1-877-ATON-549 (1-877-286-6549) . Visit the Valeant site at www.valeant.com. Contact our customer service group to find out about the products, including international distribution, here: http://valeant.com/about/contact.aspx.

Depen® in the U.S., contact Mylan at 1-800-796-9526 or send an e-mail inquiry to:  This email address is being protected from spambots. You need JavaScript enabled to view it.

Trientine Dihydrochloride: please contact Univar Ltd.

Patient Assistance Programs

New U.S. Patient Assistance Program for Cuprimine and Syprine: WD Rx Access

Valeant Pharmaceuticals launched a new program, WD Rx Access – an enhanced version of the former Valeant Coverage Plus Program – which reduces the co-payment cost for all eligible patients taking CUPRIMINE® (penicillamine) or SYPRINE® (trientine hydrochloride). The program also includes an offer that makes receiving these medications more convenient.

The co-pay for CUPRIMINE and SYPRINE has been reduced from $25 to $5, for eligible patients. Patients also have the opportunity to have their medicine mailed directly to their home through a specialty pharmacy. Specialty pharmacies offer 24-hour access to pharmacists, auto-fill prescriptions, direct follow-up with physicians and more.

It is important to know that patients need to re-enroll every year for patient assistance. For those currently enrolled, a team member from WD Rx Access will proactively reach out to help re-enrollment at the start of each year. If you are interested in financial assistance, need to re-enroll, or want to take advantage of the specialty pharmacy offer, the WD Rx Access team members can be reached at 888-607-7267, Monday-Friday, 8 AM-6 PM ET.

You can find more information on http://www.wdrxaccess.com and also learn about new services available for people living with Wilson’s Disease, which include access to a dedicated nurse who can provide support related to treatment, diet, HCP communication and more.

Teva Patient Assistance Program for Galzin™

Teva Select Brands sponsors a Patient Assistance Program for Galzin™ (www.galzin.com). If you have any questions regarding the Teva Assistance Program™ please contact them at (877) 254-1039 or visit www.tevacares.org .

 

Patient Access Network Foundation Assistance

Offers co-pay assistance for Wilson disease patients. http://www.panfoundation.org/wilson-disease
International:
The WDA has partnered with MAP International and Aton to support an international medication assistance program for Cuprimine® and Syprine®. Limited amounts of these medications are generously donated by Aton and shipped, at the request of the WDA, by MAP International. Shipping costs for this valuable program are covered by the WDA. To apply for this program please contact Mary Graper at This email address is being protected from spambots. You need JavaScript enabled to view it.

The WDA has also formed a partnership with Univar Ltd. for the compassionate use of Trientine Dihydrochloride. Again, limited amounts of this medication are generously donated and shipped by Univar, at the request of the WDA. This valuable program is completely free to the WDA since Univar also generously donates shipping costs.

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Jean P. Perog
Jean P. Perog President
Jean is a retired CPA living in Merritt, British Columbia. She has WD and has a brother with WD. Jean also served as Treasurer of the Wilson Disease Association and is an active volunteer in her community.
Carol Terry
Carol Terry Vice President
Carol was diagnosed in 1973 with WD and is a retired US Government accountant. She helped found the WDA in 1983 and served as its President for ten years. She also served as Vice-President, Treasurer and Secretary.
Mary L. Graper
Mary L. Graper VP Scientific Affairs
Mary has over 25 years experience as a volunteer leader, and is recognized for her creativity, organizational and leadership skills. She holds a B.S. degree in Education from the University of Wisconsin-Milwaukee.
Jeanne A. Friedman
Jeanne A. Friedman Secretary
Jeanne is a Licensed Clinical Social Worker and has WD. She has been with Wilson Disease Association since 2013 and lives in Kew Gardens, New York.
Stephen Walsh
Stephen Walsh Treasurer
Stephen lives in Boulder, Colorado and has a daughter with WD. He went to college at the University of Colorado and graduated with a B.S. in finance.

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