As Health Care Reform Takes Center Stage, Foundation Asks Washington to Consider CF Patients

April 13, 2009

Last week, the CF Foundation sent a letter to President Obama, the Administration’s health officials, congressional committees with jurisdiction over health care, and congressional leadership, urging them to recognize the unique health care needs of people with CF as health care reform becomes a priority in Washington.

This letter, which articulates the need for CF patients to have access to high quality, comprehensive and coordinated health care and to benefit from advancements in CF therapies, reflects the Foundation’s efforts to ensure that people with CF have a voice in this critical discussion.

Read the letter here, or see an excerpt from the letter below:

To ensure that people with cystic fibrosis receive the care they need to help them live longer and healthier lives, a reformed health care system must do the following:

  • Promote and maintain a system for coordination of chronic care to enhance the quality of care and prevent gaps in care for those with chronic and life-threatening illnesses.

  • Eliminate pre-existing condition exclusions that can block access to health insurance and assurance of portability of coverage, to ensure coverage and prevent economically unproductive job lock.

  • Protect against out-of-pocket costs, including deductibles, co-payments, and co-insurance, that prevent access to care for chronic diseases.

  • Protect against catastrophic expenses, which may require assistance to employers whose insurance plans may cover individuals with such expenses.  A program to cover catastrophic expenses should also address the issue of annual and lifetime spending caps.

  • Eliminate the Medicare waiting period for disabled Americans to protect against disruptions in care for those individuals.

Read the full letter.