How is COVID-19 Impacting Patients and the Life Science Industry?
By Jeff Terkowitz
As a virtual business, Inspire has a head start in dealing with social distancing and COVID-19. Many of our employees work virtually. Our patient and caregiver members have always communicated virtually and during this time are actively engaged in discussing the impact the Coronavirus and COVID-19 are having on their behaviors, concerns and needs. Proactive as ever, Inspire created a new resource for Coronavirus including a map of where people are discussing their experiences, videos of Inspire members participating in our #keepusallsafe public awareness campaign, and a live feed of coronavirus discussions. We have also launched a new Coronavirus (COVID-19) Support and Discussion Community on Inpsire.
Research on the pandemic’s impact on the lives of patients and caregivers is available now with Inspire’s Research Department. For many years, Inspire has been conducting virtual research with engaged patients and caregivers who eagerly take part in virtual interviews, online surveys and virtual advisory boards. The real world patient voice can be obtained using expert sociolinguistic analysis of online communication.
So how is COVID-19 affecting members on Inspire? A quick review gives a glimpse of their behaviors, concerns and needs.
Disappointment and concern over rescheduled treatments and exams
Discussion is occurring about physician visits and examinations . One caregiver wrote about having her young teenage daughter’s radioactive iodine procedure cancelled.
We’ve been preparing for RAI (no meds, LID [low iodine] foods, limited movement, mental health considerations, etc) and now it’s been cancelled amidst the covid19 pandemic. I say “we” since it’s my ___ yr old daughter who was scheduled for RAI next week. It’s disappointing. Very disappointing. I understand the why. I get it. I just don’t want to go through this again. I’m bummed. -Inspire caregiver
Concern about immunosuppressive medications
Many patients and caregivers ask each other and the physician experts on the site (via Inspire’s “Ask the Expert” posts) about immunosuppressive medications for autoimmune diseases and cancer. They worry that they are more at-risk for contracting COVID-19.
Does anyone have any updates on being on a biologic and getting covid-19? What are your doctors saying? Continue or stop taking them? -Inspire patient
I take both _[medication]_ and _medication_. My rheumatologist at the Cleveland clinic told me to stop both. I’ve been self quarantining for 2 weeks but my son and husband both are still working because they are essential workers. My doctor said I’m considered very high risk because of those medications. -Inspire patient
I was due for my _[medication] injections today and decided to skip a month or so in hopes I can better handle the covid 19 virus should I contract it. The doctor said I could do it, but that I was risking a flare. Who else decided to do this and how are you feeling? -Inspire patient
Physicians, nurses as well as pharmacy attendants, grocers and other essential workers are Inspire members, all of whom are facing the difficult decision of keeping their jobs as essential workers while being at high risk — due to immunosuppressant medications — for catching coronavirus.
I am _[a healthcare provider]_. If things continue as predicted, I will be taking care of patients with this virus (on ventilators, etc) I have read of many cases of nurses catching this from their patients despite all the protective equipment they are using. I can honestly say I am terrified that this coronavirus is going to kill me. -Inspire patient
Obtaining essential medications and treatments
Patients with cancer communicate their fear of medication shortages. Others worry about delays in getting cancer treatment for “low risk” cancers.
I wonder if treatments that are not super life saving or “urgent” for let’s say low grade cancer or adjuvant treatment post surgery will or SHOULD be delayed for a few months until the worst passes? It seems so dangerous to go to a hospital to willfully destroy your immune system during a pandemic. I know many women here will face very difficult decisions in light of this and I send you all my hugs and support. -Inspire patient
Cancer patients also fear that they would not receive treatment if they did get COVID-19 because of scarcity of resources.
Unfortunately, I think the reality is that if, hypothetically, I’m sick with Covid and go to the hospital, and another younger and overall healthier person is sick with Covid and goes to the hospital, but there’s only one ventilator, they will give the person with more survival potential the vent. Would like to avoid that scenario. F____ cancer. I hate being second rate. -Inspire patient
Scanxiety related to clean equipment
Cancer patients regularly experience anxiety over scans, a phenomenon they call “scanxiety.” Now an added fear is whether the machines for scans are adequately cleaned against the coronavirus.
Questions about lung disorders
Patients with lung disorders — asthma, hypersensitivity pneumonitis, pulmonary fibrosis, pulmonary sarcoidosis, among others — and lung cancer, ask about their susceptibility to the virus.
I am _[age]_ and have been on _[medication]_ for _#_ years and that is [the] first and only treatment I have been given for Stage IV ___ cancer and am considered NED, my overall health is excellent, am I considered Immune compromised and high risk? -Inspire patient
Is there anything patients w/ a history of _lung disorder___ can do to lessen the chances of severe disease? I also assume that patients w/ a history of _lung disorder__ are more likely to get sick w/ the corona virus? -Inspire patient
Members are also asking others with their condition about survival. One member asked, “Has anyone with [my condition] caught Covid 19 and lived?”
A fellow member replied,
This is just my story with covid 19…..I am a corrections officer from [name of state] that was diagnosed with [condition] in [year]. My lungs liver kidneys and spleen were effected by the disease but it has not really effected my every day life. I’ve been diagnosed with many autoimmune diseases over the years…I tested positive for covid19 on March 23rd. I started with a low grade fever on March 20th. I contacted my dr by the evening because I was exhibiting other symptoms. He told me to get tested in the morning but prescribed a z pack just in case. I wasn’t able to get tested on the 21st so I started the z-pack. By that evening my breathing was effected and I called the doctor again. He prescribed an inhaler along with continuing the z pack. I used the inhaler when I got winded. The next day a friend from work tested positive and I had contact with that person so the hospital tested me on the 22nd and I got the positive result on the 23rd. I’ve been very lucky I’ve had slight breathing issues (more winded) chest back and lung pain managed with tylenol. I’ve been able to take care of myself at home thanks to my husband and family. No one else in my house is showing any symptoms. I feel like I’m on the mend. I had 2 day where I felt really lousy but never felt like I had to go to the hospital. I think I had a mild case…and I think by my dr prescribing a z pack shortened the illness. I’m not sure but I’m feeling better then some of my coworkers that have no underlying health issues. Every person is effected differently by this virus but I hope my story puts a positive spin it.
Using Virtual Research during Social Distancing
The social distancing we are all experiencing during the coronavirus pandemic is a burden that people with cancer, autoimmune, chronic and rare conditions experience all the time. Connecting to others via Inspire has been a lifeline for many members. With coronavirus pandemic, virtual connectivity is even more critical. Inspire is designed for virtual communication.
Along with connecting patients and caregivers, Inspire’s mission is to advance medicine by providing virtual research with hard-to-find patients and caregivers. In other words, Inspire was built for virtual research. It’s what we do.
Inspire offers a trusted community to patients and caregivers. Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice. In so doing, we support faithful operationalization of patient-centricity. Take a look at our case studies, eBooks and news outlet coverage.