The Need for US Bronchiectasis Guidelines

People with bronchiectasis are better educated about diagnostic and treatment options earlier on compared to five years ago, when I was diagnosed. This is thanks to medical organizations, health care institutions and companies like:

Insmed
Bronchiectasis Info and Research
NTM Info and Research
COPD Foundation’s Bronchiectasis and NTM 360
The European Lung Foundation
NYU Langone
National Jewish Health
Mayo Clinic 

The result is a well-informed group of people who are being told in webinars they must advocate for the best care for themselves with their health care providers. And THEY DO!! They ask for airway clearance education, medical devices and consultations with specialists.

Often, the answer to these requests is “NO, NO, and NO!”

I have the opportunity of communicating with dozens of women every week. Our conversations often involve strategies to get providers to listen to their requests seriously.

Below are examples from this past week:

“I asked for an Aerobika prescription and when I would have my next CT scan. My doctor told me that my BE is mild and I don’t need airway clearance or follow-up scans.”

“My BE is progressing and I asked to see a GI doctor to see if I have GERD. My Nurse Practitioner said I don’t have symptoms so I don’t have reflux.”

“My doctor told me although I cough non-stop and cannot produce a sputum sample that a bronchoscopy would just irritate me.”

“I’m doing airway clearance three times a day, have tons of mucus and asked my doctor for a vibrating vest. She said they are difficult to get and could make my condition worse.”

Now, don’t get me wrong. There are superb bronchiectasis centers throughout the US and globally. These doctors are experts in the field of BE and NTM and understand the need for a holistic approach to our disease. But many people do not have the resources to travel to them and must seek care in their communities.

With more professional education and the future publication of US bronchiectasis guidelines, this situation will eventually improve. In the meantime, we need to continue to advocate for ourselves and practice daily self-care.


#bronchiectasis  #selfcare #advocacy