Jersey City,
NJ
I’m Phyliss DiLorenzo, Jersey City, NJ State Captain and COPDF Board member. I was diagnosed with COPD ten years ago. I have been an advocate for 6 years. I advocate for better lung health because I have experienced for myself care that was sub-par.
The why of advocacy is simple. Although COPD is 4th in the highest death rates in the US, it is not funded in any way that reflects the urgency and $$$$$$ needed for research. We also would like to see those who need to use supplemental oxygen receive it in the form that is most appropriate for them, and allows them to visit with family, attend events, without having to lug, large heavy equipment, and worry about running out of oxygen. If the delivery and reimbursement fees were reconsidered and made delivery of liquid oxygen feasible for all who need it, more patients could enjoy a better quality of life. We also ask that a respiratory therapist be provided to offer education on the proper use of supplemental oxygen and specific devices.
There is also education that needs to be delivered to patients, as this is often seen to be woefully inadequate. Pulmonary rehabilitation, which is an excellent treatment for COPD, as it increases tolerance for exertion, is also a repository for educating patients about their disease, using medications, oxygen, the disease process and how to best manage at home. We need to keep funding virtual pulmonary rehabilitation, as many in-person rehab programs have closed their doors.