54 Years Old and Living-Breathing Succeeding With Cystic Fibrosis
Episode 0046: New Challenges in Obtaining & Maintaining Health Insurance

Beth Sufian Podcast Show notes

Title: New Challenges in Obtaining & Maintaining Health Insurance

Beth Sufian is an attorney and a 41 year-old with cystic fibrosis. She is the Director of the CF Legal Information Hotline, sponsored by CF Services Pharmacy, which has assisted over 7,000 people with CF. Beth serves on the CF Foundation Advisory Task Force on Adult Issues.

  • Beth talks about knowing your legal rights and advocating for yourself and children.

  • Beth discusses who qualifies for Social Security benefits, Medicare and Medicaid.

  • Learn pointers on how to obtain health insurance for children and adults with CF and how to deal with increasing drug co-pays.

  • CF Legal Information Hotline offers free and confidential information on legal rights of people with CF. Call: 1-800-622-0385 or Email: CFLegal@cfserv.com

  • Learn about the “golden nuggets? of HIPAA

  • “Keep good records? suggests Beth

  • COBRA Insurance - Consolidated Omnibus Budget Reconciliation Act.

  • Beth gives pointers on Transitioning to Adulthood.

  • Beth also talks about Government Programs:

      • SSI – Supplemental Security Income

      • SSDI – Social Security Disability Income

      • Medicaid

      • Medicare

  • Beth Sufian’s clients include many people with CF. She is based out of Houston, Texas and travels nationally.

Direct download: CF-01-19-07-BethSufianSeminar.mp3
Category:podcasts -- posted at: 9:17pm EDT

With Every Breath

Title: With Every Breath – stories about people living with cystic fibrosis.

Katherine Russell is 16 years old with cystic fibrosis, from Buffalo, NY. Katherine’s book has a wide variety of writers from young, old, parents, patients, doctors, and friends. It demonstrates how the individual with CF as well as family and friends deal with CF.

This book is very inspirational and educational for all involved in the world of cystic fibrosis.

  • Katherine is an outgoing young lady that swims on 2 teams, snowboarding, and loves socializing with her friends, music (cello) and writing.

  • Katherine attends high school and is a volunteer on the CF advisory panel at Children’s Hospital of Buffalo to help work towards better CF care.

  • “I want to travel to South Africa and Europe someday? states Katherine.

  • In Katherine’s book With Every Breath, the stories range from recounts of having a child diagnosed with CF to being a patient receiving a transplant.

  • Some stories simply share advice and perspective, while others share stories of travel, success, understanding, and change.

  • For more information on the book contact Katherine Russell:

Category:general -- posted at: 1:22pm EDT

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