SalivaDirect: Spitting Is Now Encouraged

SalivaDirect received emergency use authorization (EUA) FDA approval today.

What's the big deal about SalivaDirect:

👉uses saliva that can be collected in any sterile container; no more long, uncomfortable swabs. (PS- there are reported shortages of the preferred thinner swabs, which means larger, thicker swabs are being used. Not fun.)

👉it's an approved protocol, not a kit. Any approved lab will be able to run these tests with materials they already have. A huge positive considering all the challenges we face with supply chain shortages.

👉costs a few dollars to run, not $150+ per test. This is important bc we need inexpensive testing so people can opt to test as frequently as needed. Think schools, universities, essential workers, and those returning to their offices in the coming months.

👉most accurate of currently available saliva tests at about 90% accuracy. Take 2 tests in a row if you need to be sure and boost accuracy to 99%. Think about pregnancy tests: does anyone ever really take just one?

👉rapid turnaround time, with about 90 results processed in about 3 hours. Laboratory tests can be pooled for processing: think a whole class or office can be pooled into a single test & we'd only need to test individually if the pooled test comes up positive. Currently, swab tests are taking 5-7 days to get results. We haven't even started school yet, hit flu season, nor do we have high cases like other parts of the country.

👉 it's being studied with the NBA, one of the most frequently tested groups of individuals in the world.

More about SalivaDirect here: https://covidtrackerct.com/about-salivadirect/

What's all the Buzz about Convalescent Plasma?

Vaccine development is not the only effort science is racing to develop and evaluate as part of our toolkit against COVID19.

Four former FDA Commissioner's have collaborated on this piece highlighting the latest on the study of convalescent plasma: https://www.washingtonpost.com/opinions/2020/08/03/4-former-fda-commissioners-blood-plasma-might-be-covid-19-treatment-we-need/?utm_content=buffer634f9&utm_medium=social&utm_source=twitter

The basis behind convalescent plasma is to use the defense system of antibodies from a person who has recovered from COVID19 to boost the immune response of a newly infected person.

If you have recovered from COVID19, consider donating plasma: https://thefightisinus.org/en-us#home

Donated plasma may be used for 2 different powerful routes:

1) Direct transfusion to a patient critically ill with COVID19

2) Development of plasma derived therapy

Excellent graphic detailing these 2 routes here: https://thefightisinus.org/images/TwoPaths.pdf

The federal government’s ACTIV program, also part of Operation Warp Speed, is standing up trials of promising treatments, including convalescent plasma and synthetic antibodies that work through mechanisms similar to plasma to neutralize the virus. For more information on the details of COVID19 trials: https://www.nih.gov/research-training/medical-research-initiatives/activ

Like a Sitting Duck

A recent publication in JAMA, Optimizing the Trade-off Between Learning and Doing in a Pandemic left a great void from the patient and carepartner perspective.

I'm disappointed to see that, once again, patients & their carepartners are NOT included in the potential solutions to enrich BOTH learning & doing while in a pandemic.

This is one of the biggest failures of the clinical trial landscape, COVID-19 or not.

• What if we had a pandemic clinical trial consent process?

• What if people could be informed of trial options ahead of time and proactively provide consent to clinical trials in anticipation of being diagnosed with COVID19?

• Why can't I as a patient proactively consent to participate in a clinical trial for COVID19, as a just in case, especially while I'm literally sheltering at home in a COVID19 hotspot like a sitting duck?

We have advance directives for end-of-life care planning. Why not advance consent directives for potential clinical trial participation?

Just like the taboo about death and end-of-life care planning, talking about clinical trials is always too early, until it's too late.

Here's the article: https://ja.ma/3e72XJJ

HIMSS20 Update: Do No Harm

It is after much consideration and many hours of lost sleep that I have made the decision to not attend HIMSS20. There were significant circumstances that needed to be considered. The safety of the patients I work with, the disabled family members I care for, and the safety of my own family and local community take priority over the many landmark professional and networking opportunities offered to me at HIMSS. Here is my official statement of cancellation.

I'm reaching out to let you know that I have made the incredibly difficult decision to not attend HIMSS20.

As an individual patient advocate, I am truly humbled to have the opportunity to represent the patient and carepartner voice in discussions about digital health, internet of things, innovation, the patient experience, patient engagement, and consumerism. I take these opportunities very seriously, recognizing how rare they are, especially in the conference setting, and the responsibility that comes with them.

As you may know, my day to day is spent in cancer centers and hospitals, with often very sick, very immune-compromised patients in active treatment for cancer. I have been carefully following the reports from WHO and CDC as well as local media surrounding the coronavirus. I have to weigh the potential consequences of attending HIMSS and returning home with an unsuspected case of the virus and the impact it could have if I return to my daily patient advocacy work in working with people at their most vulnerable time of their life. Similarly, as the caregiver to 2 disabled adults and a mother with small children, a potential illness, self-quarantine, or mass quarantine of a plane would be an unmanageable burden for my family. 

I have never cancelled an invited speaking engagement or interview. This year's HIMSS20 had 6 invited speaking engagements and 3 recorded interviews on my calendar. It is with a great disappointment that I have decided to not attend. Please know that this has been one of the most difficult professional decisions I have ever had to make. I greatly apologize for any inconvenience this late cancellation may cause in the scheduled programming. I do hope that future events will continue to be supportive of the patient and carepartner voice and thank you for all the opportunity that was given to me at this year's event. I wish you the safest of travels and best of luck with the conference.