CF Community Blog

The CF Community Blog is written by the community, for the community. It's about sharing our experiences, reflections, and perspectives — the good days, the bad days, and all the tough and wonderful things in between. With topics ranging from emotional health to treatments, the blog is a platform to share your unique story.

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Vertex Copay Assistance: Tips from a CF Pharmacist

If you receive financial assistance from Vertex GPS™ for a modulator therapy (e.g., Trikafta®, Symdeko®, Orkambi®, or Kalydeco®), you may be impacted by changes Vertex has made to its copay assistance program. The following tips can help you understand how you may be impacted and what next steps may be available to you.

Head shot of pharmacist.
| 6 min read


My Life Before and After the Affordable Care Act

Having two sons living with cystic fibrosis, I struggled for years with the financial burdens and restrictions of the insurance market. Since the Affordable Care Act was passed in 2010, I no longer have to worry about lifetime caps and astronomical premiums -- two issues that caused enormous grief for my family.

| 7 min read


Ask a Case Manager: What Are Co-Pay Accumulators and Should I Be Worried?

As the health insurance industry continues evolving, many in the CF community have noticed the addition of copay accumulator programs as part of their coverage. What are copay accumulators and what is the best way to approach and understand this new coverage caveat?

| 4 min read


How I Transitioned Off of My Parents’ Health Insurance Without the World Ending

Ever since I graduated high school, I've dreaded the day I would have to transition off of my parents' health insurance plan. But, by using some important resources, I discovered that getting my own health insurance wasn't as scary as I thought.

| 5 min read


Ask a Case Manager: Picking an Insurance Plan and Understanding Social Security Disability
| 4 min read


The Senate Heard Our Voice: The Role of Advocacy in CF

With several successes for the cystic fibrosis community over the past several months, advocacy is as important as ever to preserving our progress and working toward a cure.

| 5 min read