RareiTi and CysticFibrosis.com have come together during the COVID-19 pandemic, to find out directly from CF patients and their caregivers what impact the pandemic is having on them. We wondered what differences they are feeling and what we all can learn from this vulnerable rare disease community, who are already use to self-isolation and physical distancing.
Our survey, “CF and COVID-19”, was conducted March 24th to the 27th with over 100 patients and caregivers participating from 35 states in the United States. Over 60% of responders have previous experience self-isolating and or physical distancing due to such occasions as a flu outbreak. Thus far, due to COVID-19, only 1 in 10 survey responders have not had to alter their daily routine while 96% of patients are still able to get most of their basic needs met and 65% have seen little or no effect on the healthcare they receive.
Patients with the genetic rare condition Cystic fibrosis (CF) and their community are used to avoiding triggers that can bring on respiratory infections. In 1996, when it was discovered that CF patients can cross infect each other, Jeanne Barnett set up an on-line patient and caregiver community at CysticFibrosis.com, recognising that since the CF community cannot be together physically, they would need to congregate and engage virtually.
Lest the rest of us forget how lucky we are, even in this current state of lock down, we should all be brightened by those with CF who see the world through a very different lens. From a survey responder (a patient from Wisconsin) we learn that “the rest of the world is now being asked to live how we live every day so I’m able to have different and more valuable conversations with people”
Like all of us experiencing unfamiliar territory the CF community is affected by lifestyle changes including having to work from home, cancellation of routine non-urgent appointments, and the need to stay indoors, all raising stress and anxiety levels. Most of us have never had to prepare for intense periods of isolation and the impact this has on our daily lives.
However, from our survey we found that 54% of CF centers already utilize remote telemedicine and video conferencing options. It is clear from the survey, some CF centers are not as well prepared for telemedicine as others, yet the CF community appears to be better served than many other rare disease communities due to their long-standing experiences with physical distancing and virtual preparedness.
Despite all of us having to take extra precautions to safeguard ourselves and our families, it is clear there is a lot we can learn from the CF community and the way that healthcare service providers and systems are interacting with them.
Says Jeanne Barnett: “the CysticFibrosis.com community is pre-dominantly tech savvy, familiar with telemedicine and are also used to pulling together, supporting one another, sharing advice and medical information; it is second nature to them”.
Everything medical cannot be delivered on line or in an automated fashion. It is clear that we can learn so much more about how healthcare can be delivered from people affected by this rare condition and through their experience and mandated protocol of physical distancing and self-isolation.
Members have also realized some positive outcomes from this isolation:
“Lots of silver linings! We now foster pets because we’re home all the time, we actually communicate more with our neighbors and family (from afar!) by checking in to make sure they’re okay because there is more of a “group spirit.”
“Gratitude for the mundane! Focus on nutrition and exercising. Thinking of new ways to entertain myself and my family.”
And from another participant to anyone who may be diagnosed with COVID-19 “My advice is to take your time, breathe, take as much time as you can to really deal with it and don’t think the worst. I know it is definitely in my nature to think the very worst outcome for a diagnosis, but it has never worked that way. We, as a CF community, are doing everything we can to stay healthy. “
All bolded percentages above are from the survey data. The analysis is based on feedback from 102 patients in the US. 60% of responders are patients and 40% are carers during the week 23rd March 2020.
RareiTi would like to thank Jeanne Barnett and Lauren Brenneman from CysticFibrosis.com and all CF patients and carers who took part in the survey.