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Access to Care: Insurance and Reimbursement Support Programs for New PKU Treatments
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Medication for PKU is costly, but there are resources available to help you work with your insurer as well as assistance programs to supplement the cost. In this second program of our “Living with PKU” Special Edition Series, host Andrew Schorr is joined by support experts from two major organizations that assist families touched by PKU in gaining access to care and help with reimbursement and insurance needs. Experts like Maria Hardin, Vice President of Patient Services for the National Organization for Rare Disorders (NORD) and Tony Wicks, a BioMarin Patient and Physician Support program (BPPS) expert, explain their supportive roles and answer listener questions. You also hear from Belkys Prado, a metabolic dietitian discussing her experiences in helping patients with insurance and support programs.
The program begins with AnneMarie DeGeorgio, mother of a child with PKU and President of the Inherited Metabolic Disorders Support Group of Suffolk County. AnneMarie tells her story of being faced with insurance woes and how, with the help of BPPS, her son now gets the treatment needed. Learn how AnneMarie stepped up to advocate for her child and how she’s helping others with PKU in her area.
Tony Wicks and Maria Hardin provide an in-depth look at the role of each of their organizations. The BioMarin Patient and Physician Support program works with providers and patients to make sure you are getting the most out of your insurance coverage. To quote Mr. Wicks “Our job is really to be the single point of contact for that family and to really manage all the different activities that need to happen in order to get them on therapy.” The National Organization for Rare Disorders works closely with BPPS on many cases and helps to arrange for payment of health insurance premiums, deductibles, co-payments to pay for medication, among others, and is funded by the organization through donations from corporate donations, grants from concerned companies, foundation grants, public contributions, and membership dues. If you’re searching for information on how to obtain financial assistance, medical care or simply have questions about what resources are available to PKU patients, this program can provide all the answers you need and, if not, certainly point you in the right direction.
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Maria Hardin,
Vice President, Patient Services, National Organization for Rare Disorders
Maria Hardin, serves as Vice President of Patient Services for the National Organization for Rare Disorders (NORD), the primary consumer federation responsible for enactment of the Orphan Drug Act. Ms. Hardin’s 21-year tenure at NORD includes oversight of strategic direction and operation of NORD’s 38 medication and health insurance co-payment assistance programs. She is frequently invited to serve on industry...
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AnneMarie DiGeorgio,
President, Inherited Metabolic Disorders Support Group of Suffolk County
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Belkys Prado R.D., C.S.P., L.D.
Metabolic Nutritionist, St. Joseph's Children's Hospital of Tampa
Belkys Prado, RD, CSP, LD currently serves as a metabolic nutrition specialist at St. Joseph’s Children’s Hospital of Tampa located in Tampa, Florida. Ms. Prado received her bachelor of science in clinical nutrition from Loma Linda University in Loma Linda, California. She went on to complete her pediatric nutrition residency for dietitians from The Children’s Hospital of Philadelphia in Philadelphia,...
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Tony Wicks,
BioMarin Patient and Physician Support (BPPS) program expert
Tony Wicks is Co-Founder of 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. Wicks has nearly 15 years of experience...
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