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How Do You Pay for New PKU Medicines? What Resources are Available?

PROGRAM DETAILS:

Most everyone in America, if they have PKU or not, deals with insurance or sometimes lack of insurance and reimbursement issues. In this Patient Power program experts from various organizations answer your questions about reimbursement for medical foods, medication, and other needs for PKU. Joining Andrew is Karl Mason, a Reimbursement Specialist at BioMarin Patient and Physician Support (BPPS); Ms. Elaina Jurecki, a nutrition specialist at BioMarin Pharmaceutical, Inc.; and Jane Keane, Director of Patient Services at the National Organization for Rare Disorders (NORD).

The program begins with Corinna Vonderwell, a Mother of three, two of which have PKU. Corinna is also a Board Member of the Indiana PKU and Allied Disorders Association. She shares her experience in working with BPPS and NORD to get assistance with the “hefty co-pay” needed to pay for PKU medication for her two children. Corinna speaks highly of how both her nutritionist and physician at Riley Hospital in Indianapolis helped facilitate the process.

Each expert weighs in on the discussion from their perspective, talking about the resources that are available to help pay for medical foods, and in some cases, medicines through programs like NORD and BPPS. The experts outline how each of these programs work, what services they provide and the procedures that are involved in obtaining assistance. If you or a loved one are searching for help with insurance and reimbursement issues for PKU, this program is a valuable resource for getting your questions answered.

Click to here to view and print the Take Action Guide from this program.

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EXPERTS & GUESTS:
Elaina Jurecki, M.S., R.D.
Nutrition Specialist, BioMarin Pharmaceutical Inc.
Ms. Elaina Jurecki received a Bachelor’s Degree in Biochemistry at the University of Pennsylvania, and a Master’s Degree in Nutritional Science from Michigan State University. Ms. Jurecki went on to complete a 1-year dietetic internship at the University of California San Francisco Medical Center, and continued working there for five years in the Genetics Department, coordinating care for children with... more >

Karl Mason,
Reimbursement Specialist, BioMarin Patient and Physician Support (BPPS)
Karl Mason holds the position of Liaison for Premier Source, the organization that administers the BioMarin Physician & Patient Support Program (BPPS). BPPS guides physicians and patients through the process of securing coverage for Kuvan. Premier Source specializes in developing reimbursement and patient / physician support strategies for rare diseases, orphan drugs, and novel therapies. Mr. Mason has many years... more >

Jane Keane,
Director of Patient Services, National Organization for Rare Disorders
Ms. Jane Keane has been with the National Organization for Rare Disorders (NORD) since 1997. She began her career as a Patient Representative, assisting individuals to access needed medications using financial means testing. Several years later, she was assigned to programs working with AIDS and Multiple Sclerosis (MS) patients. Soon after that, came the Medicare Demonstration Project. NORD as a... more >

Corinna Vonderwell,
Mother of two children with PKU, Board Member, Indiana PKU and Allied Disorders Association
Corinna Vonderwell is the Coordinator for theTwenty-first Century Scholars Program for the State of Indiana at Vincennes University. She earned both a Bachelor of Science Degree in Organizational Management and a Master's Degree in Management from Oakland City University. Corinna serves on the Board of Directors for the Indiana PKU and Allied Disorders Association. She is a member of the... more >

TRANSCRIPT:

  1. Introduction LISTEN
  2. Corinna’s Story LISTEN
  3. BioMarin Patient and Physician Support LISTEN
  4. National Organization for Rare Disorders LISTEN
  5. Obtaining the Various Forms of Assistance LISTEN
  6. The Difference Between Formula and Medical Food LISTEN
  7. Listener Questions LISTEN
  8. Closing Comments LISTEN

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