A Bad Experience

 Two days ago, Margan and I had a disturbing experience. She saw an ad on Facebook for an RSV vaccine study. RSV is respiratory syncytial virus, and cases in the U.S. are exploding. Along with covid and flu, some are predicting a very bad respiratory season dubbed a “tripledemic”. As a pediatric infectious disease physician, Margan has lots of experience in dealing with severe RSV infection in infants and I am well aware it is also a threat at the other extreme of life. In the mid-1960s a formalin-inactivated RSV was developed but quickly dropped when it became apparent that it enhanced RSV disease rather than protecting from it. 

Researchers have been trying to understand this problem and construct vaccines that truly are protective against RSV disease. Now multiple vaccines are in trials that seem to have overcome the problem of that 1960s-era vaccine. Bavarian Nordic has developed an RSV vaccine that uses its Modified Vaccinia Ankara to deliver 5 RSV antigens and create neutralizing antibodies. In the years I worked for Emmes in Rockville, Maryland, I became thoroughly acquainted with its MVA vaccines for smallpox and the very good safety profile those vaccines have. Margan called the people doing the trial here in Los Angeles; we were both impressed enough to make an appointment to enroll in the study.

Now for the disappointing story. The company running recruitment for this study in Los Angeles is Matrix Clinical Research. I won’t provide a link but Google Search will. We should have been forewarned by the address and Google Maps Street photo of the building itself. It turns out that this entity resides within the 3rd floor of a federally funded community health center for the underserved. As we exited the elevator we stepped into a crowded waiting room (poorly ventilated) with adults and children, many unmasked and coughing. The receptionist didn’t understand us when we said we were there to enroll in a research study but her colleague behind the desk produced a clipboard labeled “RESEARCH” and instructed us to sign in. This we did with some trepidation.

I will add that Margan and I were wearing N95 masks. We found seats (as far away from the coughers as possible) and waited about 15 minutes when a young medical assistant instructed us to enter an exam room (also poorly ventilated). She gave us clipboards and pens and instructed us to fill in the paperwork and sign it. Margan asked if someone was going to explain the study to us. The medical assistant acted annoyed and exited. After 5 minutes a 30ish man entered, announced he was Dr. ***, and that we were his patients. 

Margan suffers fools poorly. She stood and announced that she was Dr. Zajdowicz and the man accompanying her was also Dr. Zajdowicz, that we were both retired infectious disease physicians with long experience in clinical research, and that we were not patients but potential research subjects for the RSV study. Dr. *** then proceeded to deliver a poor summary of the study and made it apparent that his understanding of the study was that he needed to get us enrolled, blood drawn, and test material delivered and that he was not used to being addressed this way. Margan called him out on not wearing a mask and for obviously not having the first clue about enrolling trial subjects, let alone his responsibility to deliver informed consent. We announced that we were done with this sham, took along the top papers on which we had begun to enter demographic and medical information, and left.

Needless to say, we had a lot to discuss on the way home and after we arrived back in Altadena. We suspect the nice woman Margan spoke to on the phone is at some site far distant from where we were directed. She reassured us that we would experience professional treatment but obviously we were not. Whoever Matrix Clinical Research really is, they are only there to get people signed up as quickly as possible so they are paid the fee that Bavarian Nordic offers for a warm body. Informed consent is as understood by them as quantum physics. We also found it suspicious that the site is a federally funded one and I doubt that HRSA is aware they also see and enroll research subjects for money. I honestly don’t know the financial arrangements. I will say that we had a window into the sort of health care the uninsured in poorer sections of Los Angeles experience.

I write this only to describe our experience. I know that there are many legitimate sites conducting clinical research trials and I do encourage people to explore them because clinical research is vitally important to ensure advances are made in healthcare. In hindsight, seeing the building on Google Street Maps, I think I would have passed on this “opportunity.” I taught research ethics at Emmes for over a decade and this was the antithesis of what anyone engaged in clinical trials should do. There are some studies at Cedars-Sinai that are of interest. I know that it is a quality institution.