I write with good news! Our pleas have been heard and some of the discriminatory policies or proposed policies that explicitly list cystic fibrosis in triage guidance are being challenged or have been reviewed. I have updates from Wisconsin, Vermont and finally a national position from Cystic Fibrosis Foundation. It is CRITICAL we continue to be loud about this care rationing.

In Wisconsin, State Senator, André Jacque, wrote a letter to the Department of Health Services where he said, “I am deeply concerned about the guidance document previously posted by the Wisconsin Hospital Association at the request of DHS because I believe it could lead to potentially deadly discrimination against cystic fibrosis patients with well-managed treatment and lung function near normal parameters that just happen to contract COVID-19.” He concludes, “The lives of people with disabilities are equally worthy and valuable as those of people without disabilities.

You can read the full letter HERE.

I have also been in touch with a pulmonologist at the University of Vermont Medical Center where it was determined ethics leadership agrees with our plea that triage based on diagnosis alone is discriminatory. The overall scope of an individual’s health is the leading determinant of a person’s position in the queue for a ventilator in the presence of a scarcity. While I still think the language is open to interpretation on the Vermont Department of Health’s website, I am greatly reassured that single data points (ex. an underlying diagnosis) will not be used to disqualify a patient from receiving critical care if a shortage does manifest.

I was also thrilled to see the Cystic Fibrosis Foundation is joining patients and families to right the wrong (and outdated) policies that have been popping up in a number of states around the country.

Finally, The Center for Public Integrity has been active on r/CysticFibrosis (the CF Reddit page) asking for direct leads from people who may have come into contact with some of these discriminatory policies in the United States. You can see that post HERE to see how you can contact them if you have, in fact, come face to face with triaging issues.

I do, however, think that triage issues likely haven’t hit people with CF quite yet since our health care system seems to be holding strong against the COVID-19’s capacity demands, which is great news. I hope it never happens.

In fact, a dear friend of mine with CF in New York was able to go through with a (successful!) double lung transplant after quite a few weeks in Intensive Care and on a life support.

Hopefully we never get to a point where triaging is a reality in our lives, but if we do, we must continue to be loud to make sure updated policies reflect the breakthrough advances we have had in cystic fibrosis that lead patients to live with a very manageable symptoms.

I got a few questions about where these guidelines where found. The Center for Public Integrity did a report about discriminatory triage guidelines that quickly circulated through the online CF community. The letter that the Wisconsin State Senator above sent to the Wisconsin Department of Health Services cites that article, too.

The article contains an interactive map of the United States that brings readers to the policies around the country. The five states the report mentioned were: Vermont, Alaska, Oklahoma, Wisconsin and Florida. The article was linked in my blog post from last weekend, but you can again find it HERE.