Lessons Unlearned

Why do we continue to have poor infection control?

While I am thrilled that the pandemic phase of Covid 19 is over, the complete lack of infection control in medical settings is nothing for anyone vulnerable to Covid 19 to feel happy about.  I was born without a whole immune system.  What I have is a rare antibody deficiency disease.  I don’t make enough antibodies to fight infection normally.  It’s easier for me to get sick, I can become sicker from infections, and I do not always have a normal vaccine (or antibiotic) response.  Avoiding infections is a crucial part of my staying healthy.  

I had 4 doses of vaccine, I wore a properly fitted mask and I did not remove it for even a second.

I caught Covid last July from a routine doctor’s visit.  I had 4 doses of vaccine, I wore a properly fitted mask and I did not remove it for even a second.   There were no other patients in the office.  The waiting room was empty but I sprayed my pocket-sized Lysol anyway.  I was immediately taken into an exam room by an unmasked assistant.  I sprayed the exam room a total of 3 times with Lysol as I waited for my doctor.  Any more than that would have been overpowering.   My doctor wore a mask and everything went well so my visit was brief.  When I left used hand sanitizer until I got home and washed my hands.   48 hours later my symptoms began.

My point in telling how I caught covid is not to debate vaccines, or masks but to be clear that I went above what most patients do to avoid infection during a doctor’s visit.  My mini bottle of Lysol is seen as a bit brazen by most standards.   I am unable to avoid infection all by myself.  

I currently live with a handful of chronic conditions.  Each condition has its own specialist.  How am I supposed to get through all my appointments without getting sick?  Covid is still circulating all year round and the vaccines don’t do much to prevent infection.  I am up to date on my boosters and I still mask indoors, but I know it’s not enough.  And so I am delaying my appointments and routine tests and care as much or even more now than I was during the pandemic.  I have health insurance but I don’t have full access to my healthcare unless I want to be sick all the time,  risking the health I have fought so hard for my entire life.

I am sharing this today because of even worse stories I have been hearing lately.  One was by a distraught wife whose husband was in the ICU and had a lung transplant.  She and her family were wearing a mask to visit her husband but the hospital staff caring for him were not!   And this is why I am speaking up today.

It’s not just people with rare diseases like me who may be vulnerable to covid. 

The elderly, organ transplant patients, cancer patients and others with existing conditions are all more likely to have problems from Covid.  But let’s be honest here.  Covid is not healthy for anyone.  It’s inconvenient for everyone and so it is understandable that most people don’t want to take precautions.  However, an ICU is not a pizza parlor, mall or movie theater.    Hospitals exist to help people get well.  Anyone requiring ICU care is very sick and under no circumstances should anyone be careless with their health and safety.  Maskless medicine when working with with at-risk patients is wreckless & sloppy.   Why as patients, as human beings are we accepting sloppy medicine?

… an ICU is not a pizza parlor, mall or movie theater. 

Even aside from covid what about all the other respiratory infections- RSV, Flu, and Strep throat?  So many infections can be passed to patients by healthcare workers before they have symptoms.  Better infection control protocols have been desperately needed.  Hospital-born infections have always claimed lives.  When as patients are we going to demand better care? 

My condition is rare but it affects 250,000 Americans.  If you add HIV patients, cancer patients, our elderly, all our immune-compromised & Immune suppressed we are not a small group.  What we need is for our patient organizations that represent us to speak up.  We deserve patient-centered care that does all it can to avoid harming us while treating us.  All human beings can benefit from better infection control in medical settings.  The idea of preventing the spread of respiratory viruses in healthcare settings may seem radical, but if we look back to the early 1800’s expecting your doctor to wash his hands would have been controversial.  Medicine has come a long way since then, but Covid has taught me we still have so much further to go. 

Joanna Tierno is a rare disease patient and advocate.