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Our Cause

So why are we doing this – simple – to raise national awareness to some of the challenges faced by individuals with CF, and to engage those that can bring about change.

Let me share just two examples:

  • First, the recent FDA drug/device approval, Cayston® – a new drug class for inhalation, and a novel delivery platform, both developed to address specific needs. But, are you aware that when an Altera® electronic nebulizer is lost, broken, or is otherwise not covered by warranty for a patient insured through Medicaid or Medicare that laws around “inducement” prohibit the manufacturer or pharmacy from replacing this $800 technology advancement? And in many cases, this takes an important treatment option “off the table” for prescribers and patients alike, letting “type of payer” versus “clinical need” drive treatment.
  • Second, how about CF-specific vitamins? In 1986, adults comprised 29.2% of the CF population, compared with 49.7% in 2013. How many state Medicaid Programs cover CF-specific vitamins for adults? Few, and Medicare provides no coverage. Unfortunately, many adults simply can’t cover the out-of-pocket cost of CF-specific vitamins, and due to their insurance (i.e. Medicaid or Medicare) cannot participate in manufacturer programs. Importantly, with the growing suggestion that vitamins may be linked to lung health, CF-specific vitamins may be a more important part of daily therapy than once believed. Again, “payer type” and not “clinical care guidelines” may dictate treatment.

This is why Christian is riding, and I’ll be following – to raise awareness at a national level to issues like these, and others, and to try and affect change. This is OUR CAUSE.

– Mike