Angela Godby, Assistant Vice Chancellor for Federal Relations for the University of Texas System.
Health Reform-What Does It Mean To You?
After years of political posturing and intense debate, new healthcare reform legislation was signed into law earlier this spring. So, what does that mean for FIRST patients and families?

This fall, a number of provisions of importance to FIRST members went into effect:
  • Children with pre-existing medical conditions can no longer be denied health insurance coverage.
This means that a FIRST family whose son Jimmy was born with EHK, and who has been unable to find an individual policy because of the baby's pre-existing condition, will now be able to get their son covered.  This "pre-existing condition" has meant the family has had to pay out of pocket anytime Jimmy needed to go to the doctor.

  • Children will be able to stay on their families' policies until they reach age 26.
While some policies do currently allow coverage of full-time students, now, sons and daughters can be covered even if they are not students. So, Susie Q with Lamellar Ichthyosis will have her derm visits and creams covered under her parents’ insurance plan until she is 26.

  • Annual and lifetime limits on health insurance coverage will no longer be allowed.
Insurance companies will no longer be able to place lifetime limits on coverage, which will ease consumers' worries about running out of coverage or facing catastrophic out-of-pocket costs.

In addition to these key provisions, an easier appeals process will be required for denial of medical coverage.
Additional insurance reform provisions and coverage benefits will be rolled out gradually over the next four years.

Additional Resources to Learn How Health Reform Affects You
The Genetic Alliance has published information in its weekly bulletin to help you stay informed and updated on the milestones of the Patient Protection and Affordable Care Act. The Kaiser Family Foundation launched a new online tool, the Health Reform Source, to help the public better understand the various provisions contained in the Affordable Care Act. The new website provides explanations of the provisions included in the new law, an analysis of issues surrounding implementation of the law, public opinion polling, and information from the states as provisions in the new law begin to take effect.

FamiliesUSA ( created a blog series to collect materials and tools of their own and those of many of their partners. They have gathered fact sheets, flyers, videos, brochures, and much more. Be sure to check out their Six-Month Anniversary Blog Series.

News on the Hill keeps members current with the legislation in Washington, DC. This column is written by Angela Godby, affected with lamellar/CIE.
Share This Page: