Affordable Medicines for Wilson’s Disease - Treatment Benefits and Access Pathways

Wilson’s disease is a rare inherited condition in which the body is unable to eliminate excess copper, resulting in a toxic buildup in organs like the liver, brain, and eyes. It is a rare inherited disorder affecting about 1 in 30,000 people. And without the right treatment, high copper levels can cause life-threatening organ damage. 

Fortunately, with early diagnosis and consistent treatment, people with Wilson's Disease can live full and healthy lives. But one major hurdle remains - Affordability. 

In this blog, let's explore the medicines available affordably, ensuring global access to Wilson’s Disease treatments.

What causes Wilson's Disease?

Wilson's disease is a serious genetic disorder caused by a defect in the ATP7B gene. It is inherited in an autosomal recessive pattern. This means that both parents must pass on the same abnormal gene to the child for the disease to appear. Many times, those who have only one abnormal gene show no signs of the disease but are carriers. While Wilson’s has no cure, treatments are available to manage the disease.

Wilson's Disease Treatment 

Most people with Wilson’s Disease can live full and healthy lives with early diagnosis and continuous treatment,. Starting treatment on time greatly reduces the risk of lasting damage to the liver or brain. But for many families, the cost of essential medications can be a major burden.

Wilson's Disease medicines work by removing accumulated copper from the body or preventing copper absorption.

There are three primary medications used for treating Wilson's -

Penicillamine

• Penicillamine is a chelating agent that is used to remove copper from the body. 
• It causes the excess copper from the body to be passed out in the urine. 
  
  

Trientine

• Trientine is an alternative to penicillamine. 
• It is also a chelating agent that removes copper from the body but has slightly fewer side effects.

Most patients are prescribed either Penicillamine or Trientine depending on their tolerance.

Zinc

• Zinc is an option in some cases. It works by preventing the gut from absorbing copper from food. 

Why are the medicines for Wilson’s Disease so expensive?

Rare Disease Designation

As Wilson's Disease affects fewer than 1 in 30,000 people worldwide hence its medicines are classified as “orphan drugs,” which often come with limited competition and high development incentives, leading to higher pricing.

Brand Monopolies

In some regions, only one or two companies hold the marketing rights, especially for trientine formulations. Without generic competition, prices remain high, often exceeding $75,000 to $180,000 per year.

Local Unavailability

Some countries have no local distributors or only carry the medicines in hospital settings, which may not be reimbursed by insurance or public health systems.

High Mark-Ups and Distribution Costs

Even when generics are available internationally, local prices can include importer markups, logistics fees, and pharmacy handling costs, pushing prices far beyond manufacturing costs.

Manufacturer Relief and Access Programs for Wilson’s Disease Medications

1. Bausch Health Patient Assistance Program
   Bausch Health, the manufacturer of both Penicillamine (Syprine®) and Trientine (Cuprimine®) in the U.S., offers a Patient Assistance Program (PAP) for uninsured or underinsured patients.
   Eligibility - U.S. residents, income-based, must not have insurance that covers the medication.
   
   
2. Rare Disease Foundations & Co-pay Programs

Some organizations provide financial assistance for rare/orphan diseases, even if not tied directly to the manufacturer.
Examples -

• HealthWell Foundation – Rare Disease Fund
• National Organization for Rare Disorders (NORD) - has programs in partnership with drug manufacturers.
• The Assistance Fund (TAF) – May offer support depending on funding availability.

Personal Importation of affordable generics when local options are too expensive

Many countries permit the personal importation of affordable life-saving medicines from other geographies when local options are unaffordable, unavailable or unsuitable for a patient. Medspartner facilitates compliant personal imports of affordable Wilson’s Disease medicines for patients with a valid prescription from a local healthcare professional and other essential documents required as per the patient’s local laws.

Here’s a cost comparison table showing generic Wilson's Disease medicines costs (Trientine, Penicillamine, Zinc Acetate) via Medspartner's import program, alongside approximate international prices.

Advantages of Generic Wilson’s Disease Medicines

Cost savings - Huge cost savings make the medicine available to patients facing financial stress.

Assured Quality - These generics are sourced from FDA/EMA-approved Indian manufacturers, offering high quality.

Compliant importation - Orders are processed only after due diligence as per the home country’s regulations.

Affordable Options for Wilson's Disease Treatment are Within Your Reach

Trientine, Penicillamine and Zinc Acetate are lifelines for those living with Wilson's Disease, but the cost can be a barrier for many. On the bright side, there are affordable and safe options available in countries like India, which are accessible to international patients through personal importation. At Medspartner, we assist patients who are facing financial hurdles in accessing these safe and effective medications.

Write to us today to explore safe and affordable ways to purchase affordable versions of the drugs for Wilson's disease.