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Past, Present & Future of Clinical Genetics Services In Upstate NY

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Luba Djurdjinovic, MS

Ferre Genetics, Binghamton NY

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I have no conflict of interests

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We have come a long way

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  • I recall when………

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  • June Peters
  • Carolyn Farrell
  • Jean Peterson
  • Bonnie Braddock

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NYS Birth Defects Institute

  • Established in 1967
  • NYS Department of Health (PHL Article 27-C in the

273-1) section

  • The commissioner shall establish within the department, a birth defects institute for the purposes of initiating and conducting investigations of the causes, mortality, methods of treatment, prevention and cure of birth defects and genetic and allied diseases.

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Ian Porter MD (1927-2016)

  • Dr. Porter had a critical role in establishing the NYS Birth Defects Institute

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  • Later joined Albany Medical Center where he spent the rest of his career in pediatrics and medical genetics, serving as Chief of Pediatrics

Times Union May 2, 2017

« Ian Porter a consummate Renaissance man »

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New York State Genetic Services Program (1978- 2018)

  • From the funding RFA: “Since its inception in 1978, the primary purpose of the New York State Genetic Services Program has been to support high quality comprehensive and noncategorical genetic counseling services in every health service area (HSA) of the state”.
  • This provided grant funding to NYS medical centers with medical geneticists to support at least one genetic counselor position
  • This was essential $$ for upstate genetic services and supported expansion of genetic counseling services
  • Funding was eliminated in 2018

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Ongoing dilemma

Need

GC

$$$

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Historical economics of genetic counselor positions

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  • NYS Genetic grants (25 centers - average $50K- ended 2018)
  • A history of “ambivalent” billing for genetic services
  • Laboratory income supporting GC positions
  • Special grant funds
  • Research grants

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  • CPT code for genetic counseling (face to face only)
  • NYS Medicaid billing for GCs (if service provided in an Article 28 facility)
  • Lack of credentialing GCs by health insurers

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We continue to see progress

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  • Increased Access
    • More GC centers
    • More GCs
    • Adoption of telegenetic consultation
    • New CPT code January 2025

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Licensure- almost 35 years!!

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  • Karen Greendale

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  • Elsa Reich

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  • Luba

Met with NYS Dept of ED (1989?)

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  • More formal efforts began in in 1990-1991 with the NYS Task Force
  • Elsa had key role
  • Dr. M. Nusbaum (Ferre Institute)
  • Goal to bring into focus, the role of genetic counseling and not to forget upstate GCs
  • “DNA Day” for NYS legislatures in their private seminar room

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Karen Greendale

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Elsa Reich

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The future offers us opportunity for

  • Professional development
  • Collaborations
  • Support licensure
  • Achieve broad In-network status with major health insurers
  • Promote GC positions in community hospitals
  • New models of practice

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