National Organization for Rare Diseases

Go to NORD's official home page at: http://www.rarediseases.org/

The Cystagon® Drug Assistance (CDA) Program was created to assist patients with nephropathic cystnosis who cannot afford to purchase Cystagon®. Mylan Pharmaceuticals, Inc., sponsors the CDA Program. The National Organizaiton for Rare Disorders (NORD) is the administrator of the program. NORD is a not-for-profit organizaiton dedicated to the identification, treatment and cure of rare "orphan diseases."

HOW THE NORD/MYLAN CYSTAGON® DRUG ASSISTANCE PROGRAM WORKS

WHO CAN APPLY?

People with nephropathic cysitnosis who are prescribed Cystagon® but cannot afford to purchase the drug are eligible for this program. They must be diagnosed with nephropathic cystinosis by a licensed physician. All applicants must be citizens or permanent residents of the United States.

Specific medical and financial information will determine if a person is eligible for the CDA Program. The patient/applicant must show financial need. They cannot be eligible for federal or state medical reimbursement programs.

THE APPLICATION:

• In order to be considered for the CDA Program, the patient (or parent/guardian) must complete and sign the application.

• A copy of the family income tax form with W-2 form(s) from the most recent year filed is required. A photocopy of the last three pay stubs, or Social Sceurity Disability statement(s) are also needed.

• The applicant must obtain a medical statement from a physician regarding the patient's diagnosis and recommended dosage of Cystagon®.

• The applicant must sign certain forms releasing NORD & Mylan Pharmaceuticals from any liablity for this charitable program.

• The applicant must also allow NORD to speak with the doctor, insurance company or bank if necessary.

  NORD's staff will review completed applicaitons. They will also try to find reimbursement programs that may provide private or public prescription drug coverage. It is important to note that while NORD makes every effort to help qualified applicants, beneficiaries have no legal rights to benefits from the CDA Program.

  AWARDS:

  The CDA Program awards Cystagon® to qualified applicants. Cystagon® is awarded according to financial need and the amount of drug available to the program. All information on applications is kept confidential. Each beneficiary is reviewed during the year to adjust the drug amount if there are dosage changes.

  All applicants who are awarded Cystagon® are informed of the percentage that NORD will send to them for free. If NORD provides less than the full dosage required, the patient (or family) is expected to purchase any remaining amount of Cystagon® at their own expense.

  NORD is not responsible for delays in shipping the drug or other service problems. If there is a delay in receiving shipement of free Cystagon®, patient (or families) are responsible for purchasing the drug at their own expense.

  If the applicant has already purchased Cystagon®, the CDA Program cannot cover the cost to the patient retroactively. Once the applicant is approved for the program, the percentage granted to future awards will be free fro a period up to once year, except for the cost of shipping and handling of the drug. You will be responsible for payint the mail-order pharmacy directly for these shipping costs.

  If your application for assistance is denied, or NORD ends an award for any reason, an applicant may request that NORD reconsider its decision. The applicant must send a written appeal within 30 days of receiving the denial letter. NORD's decision on any appeal shall be final. While the appeal or request to be reconsidered is being reviewed, the applicant is responsible for obtaining Cystagon® at their own expense.

  In the unlikely event that the CDA Program ends, NORD will notify all participants by letter as soon as possible. This will allow participants to make arrangement to purchase Cystagon®.

  PROGRAM GUIDELINES:

• The program participant must be diagnosed with nephropathic cystinosis.
  
• Appplicants must hae no insurance (government or private) or other reimbursement benefits for prescription drugs.
  
• Applicants who hae health insurance with limited prescription drug coverage will be considered on a case by case basis.
  HOW TO APPLY

  Generally, a patient over 18 years of age may submit his or her own application. If the patient is a minor, the parent/guardian must complete the application.

  One application per patient, per year, will be accepted. A second application may be allowed in the event of a major change in the patient's financial situation.

  If an applicant is under 18 years of age or a dependent, NORD will request financial information of family members or guardians before making a decision.

  Patients must re-apply after year. Acceptance into the program, at any given time does not mean that applicants will be given benefits at a later time.

  To receive an application for assistance, complete and mail the form requesting an application.
  

  Send form to: NORD/MYLAN CYSTAGON®
  Drug Assistance Program
  P.O. Box 8923
  New Faifield, CT 06812-8923

  Or Call Toll Free:

  1-800-999-6673

  or

  203-746-6518

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