IBD Patients Like Eric Prompt More Questions About COVID-19

My Covid Story:

I began to feel ill the night of my eighth birthday. Less than a month later, I was diagnosed with Crohn’s disease. Having just barely finished second grade, I didn’t know what this disease meant or its severity — let alone what the condition had in store for me. Since my diagnosis nearly a decade ago, I have luckily required relatively minimal treatment and experienced no subsequent flare-ups. Now, living through the COVID-19 pandemic as a high-school senior, the potential implications of the virus have caused newfound worry for me and my loved ones.
Both curiosity and necessity have expanded my knowledge about Crohn’s disease. Crohn’s is a type of inflammatory bowel disease (IBD) where the immune system of the gastrointestinal tract becomes overactive, thereby attacking healthy tissue and giving rise to chronic inflammation. Patients with active IBD typically take immunosuppressant medication to help subdue inflammation; once their immune system is compromised, so too is its ability to fight against other illnesses like COVID-19. This same concept applies to hundreds of other inflammatory conditions that similarly require immunosuppressors.

Assessing the Risk for those with IBD

Scientists have been researching the impact of COVID-19 on those with immunodeficiencies, and as the United States sees a dramatic resurgence of COVID-19 cases, more information has become publicly available to address rising concerns including the risks of contracting the virus. According to the Centers for Disease Control and Prevention (CDC), those who are moderately to severely immunocompromised are particularly vulnerable to COVID-19. On a more positive note, however, a study published in the Journal of Clinical Medicine, concluded that IBD patients are not at higher risk of severe illness. To break it down, they appear to be more susceptible, yet the effects of the virus are no worse than those of the general public should they become infected. 

Nonetheless, I hope everyone would do their part to reduce the risks of contracting and spreading COVID-19, masks and vaccines being the most effective methods we have thus far. Paradoxically, as vaccines become more accessible, vaccine hesitancy seems to become more widespread as well, even, disconcertingly, amongst immunocompromised patients. A survey conducted at the start of vaccine distribution revealed that 70% of IBD patients were concerned about the side effects of COVID vaccines.

Vaccines and IBD

For some, the belief that the vaccine may transmit the virus causes apprehension. While significantly immunocompromised patients should not receive live vaccines, none of the COVID-19 vaccines currently distributed in the US contain the live SARS-CoV-2 virus, meaning that it is impossible to get COVID-19 from the vaccines. It is well-known, though, that the vaccine often causes side effects such as swelling, headache, muscle pain, and fever. Thankfully, the risk of side effects from either Pfizer or Moderna vaccines is no greater for IBD patients according to researchers from Cedars-Sinai Medical Center, who published these results in the American Journal of Gastroenterology. In fact, according to Gil Melmed, MD, corresponding author of the study and Director of Cedars-Sinai IBD Clinical Research, “If you’re being treated with advanced therapies such as biologics, these side effects might even be milder.” Of the 246 patients in the study, 80% being treated with methods such as biologics or Janus kinase inhibitor therapies (both of which suppress the immune system) reported fewer side effects.

Although vaccines have shown no additional negative effects in immunocompromised patients, some have struggled to recognize the positive effects. To work properly, COVID-19 vaccines require an immune response. For some taking immunosuppressant medications, reports have shown little to no detectable antibodies against the virus after completing the two-dose vaccine regimen. In such cases, the CDC has officially recommended additional mRNA doses after studies indicated enhanced immune response, albeit with certain qualifications:

“The clinical benefit of an additional mRNA vaccine dose after an initial 2-dose primary mRNA COVID-19 vaccine series for immunocompromised people is not precisely known. However, for people with moderate to severe immune compromise due to a medical condition or receipt of immunosuppressive medications or treatments, the potential to increase immune response coupled with an acceptable safety profile, support the recommendation for an additional mRNA vaccine dose after an initial 2-dose primary mRNA COVID-19 vaccine series.”

Importantly, antibody presence is not the only aspect that could indicate defense against the virus.

“There are other types of immunity which may provide protection,” according to a statement from the Leukemia & Lymphoma Society. “Immune cells known as T cells play a role in the ability of our immune system to protect us against COVID-19.”

My Outcome May Have Been Different

As noted, it has been almost a decade since my Crohn’s diagnosis. I am incredibly grateful that my life has essentially been normal and that I have not contracted COVID-19. However, if this pandemic had occurred over a different timeline, I may not have been so lucky. Both while hospitalized at the age of eight and for months afterwards, I was on high doses of anti-inflammatory steroids, which would have rendered me at higher risk to the virus and my immune system weak if I had to fight it. In addition, along the course of my condition, the doctors considered prescribing a biologic, either Remicade or Humira; that, too, would have put me at higher risk. If my IBD flares up again, especially in the midst of a resurgence, I will be at higher risk from both my underlying condition and its possible treatments. While these scenarios represent hypotheticals, I know many people who experience such circumstances in actuality. For those whose immune systems are resistant to the vaccine, they rely on the rest of us to get vaccinated.

Written by Eric Chen

Edited by Dr. Jacki Hart

Yasmina’s First Day Vaccinating Reminds us Healthcare Workers are Human

My Covid Story:

Throughout the pandemic, healthcare workers have been lauded as unsung heroes — rightly so. At the same time, they are human and have experienced many of the same range of emotions as “everyday” people during and following shutdown. Truth be told, healthcare workers have had much to manage including adapting to the scientific evidence as it unfolds. Yasmina, an Emergency Medical Technician (EMT) on the frontlines since the start, shares a personal reflection from her first day administering vaccines. While that was back in February 2021, Yasmina’s recollection of her feelings in that moment remains poignant.

Yasmina’s First Day Vaccinating Reminds us Healthcare Workers are Human

The cold, brisk air was biting at my fingertips and painting my ears faintly red. Luckily, my tactical pants and boots kept me warm as I trekked to Campus Center — the location of the University’s vaccine clinic. Passing through burgundy doors, I welcomed the blast of heat from the main concourse. Proceeding down to the basement level, I signaled a quick hello to a coworker and entered the post-vaccination waiting room. The creaking wooden floors, the brutalist architecture, and the concrete ceilings were all familiar; the array of strong feelings that swept over me were not.  

Prior to my first shift at the vaccine clinic, emotions had been brewing from 11 months of seclusion. At that specific moment, I felt mostly anxiety and worry about the effectiveness of the vaccine I had received two weeks prior. Thankfully, the overwhelm quickly dissipated as I settled at the observation table. Another Emergency Medical Technician (EMT) welcomed me, introducing one another by exchanging names and our respective year of study. Each subsequent shift brought new faces, new greetings, and shared conversations along the same lines, albeit with different details. The type of small talk and chatter that I had previously taken for granted brought an unexpected warmth and comfort.

Freshly vaccinated patients waddled into the waiting room, sporting sparkly silver band-aids and sitting in the next available seat. Some swung their arms in wide circles, hoping to alleviate the impending soreness from their shots. Others sat cross-legged, perusing a newspaper or well-loved paperback, or swiping to check their phone.

Months earlier, this spectacle may have seemed mundane. Now, it meant everything: hope for return to normalcy. Lines stretched from the basement floor, up past the escalators, finally teetering out to the parking garage. Wait times extended from 30 minutes to an hour and a half. The number of people taking it upon themselves to receive the vaccine, despite personal concerns and whispers about its novelty or how quickly it was produced, was uplifting. Patient conversations unfolded with excitement. Words were spoken with bright-wide eyes and goodbyes with crinkled crows feet  — a tell-tale sign of smiling behind their masks. As the academic year ended and I began working daily at the clinic, faces and stories started to resemble one another.  Exasperated expressions of impatience to see daughters, sons, and grandchildren, as well as gratitude and relief to be with friends, family, and colleagues once again.

The auditorium was filled with a contagious sense of hope and my favorite sight of  crinkled eyes revealed rising relaxation as we gained assurance of vaccine safety. 

                                                                                                    Written by Yasmina Berkat
                                                                                                       Edited by Dr. Jacki Hart

Isolated Elderly and Stir-Crazy Teens Form Real Bonds, Virtually

My Covid Story

Older adults are at high risk for severe consequences from COVID-19. While this necessitates self-isolation to help mitigate spread and reduce their chances of contraction, the ensuing seclusion is not without its own health risks. The National Academy of Sciences discovered that social isolation and loneliness increase the risk of anxiety, depression, and even premature death in the elderly. Not everyone who is socially isolated (defined as lack of social connections) is lonely and not everyone who feels lonely is socially isolated. Elderly individuals are at higher risk for loneliness and/or social isolation because of factors like living alone, losing friends and family, having a chronic illness, or experiencing hearing loss.

Whether experienced together or separately, loneliness and social isolation are referred to as “poor social relationships,” which increase the risk of heart disease by 29%, stroke by 32%, and dementia by 50%. Among people with heart failure specifically, loneliness was linked to a 4-fold increase in the risk of death, a 68% increased chance of hospitalization, and a 57% rise in emergency department visits.

Disrupted Routines Replaced with Distanced Connections

Many elderly individuals have limited social contact, often restricted to places of worship or community centers. Even routine public encounters in local businesses like grocery stores, pharmacies, or coffee shops are no longer available to the same extent, due to protections set in place against COVID-19. In addition, those who lack close friends or family, or who had relied on care from either paid caregivers or voluntary services, as well as those who were already isolated, are at an increased risk of loneliness and associated health concerns.

Seeking to alleviate the physical and emotional isolation of at-risk seniors, Rabbi Marcia Plumb of Congregation Mishkan Tefila in Brookline, Massachusetts developed the Silverlining Buddy program to replicate volunteer and visiting programs that existed prior to COVID-19. This virtual program is an intergenerational collaboration, managed by Wendy Handler, designed to foster relationships between seniors and college students or young professionals. Understanding the difficulty that technology can present for some seniors, Rabbi Plumb conceived the program as an old fashioned, basic pairing of individuals through telephone contact. With the support of Combined Jewish Philanthropies (CJP), a non-profit organization in Boston, they are expanding the program to use Zoom or other technologies.

The program has successfully matched more than 100 buddy pairs

The program has successfully matched more than 100 buddy pairs, based on community needs and availability. Young adult volunteers undergo basic training and then typically connect with their senior buddies at least once a week. They discuss a myriad of topics ranging from personal life stories to politics to the science behind COVID-19. While the program was initially designed to help reduce loneliness among older adults, Ms. Handler says the program has shifted into more of an equal relationship where the young volunteers get just as much out of the experience as the older adults.

Unexpected Life Parallels

Rosalie, a senior buddy, became involved in the program through her synagogue; she thought it would be fun to talk to someone from a younger generation. She and her buddy, Nikki, a college junior, have a lot in common. Both grew up in Brooklyn, New York. Both had family members who were Holocaust survivors, and they share similar political views. Conversations between Rosalie and Nikki run the gamut from their personal lives, including gardening (a hobby of Rosalie’s) and travel to politics and science. They even exchange recommendations for good books and show each other photos over facetime. Rosalie likes hearing about changes in Brooklyn and she also now appreciates how the pandemic has imposed limitations on the younger generation still in college too. Rosalie says that she and Nikki never run out of topics and that her young companion asks thoughtful questions that make her reflect. “It’s comforting to talk to [Nikki] and hear about her life,” Rosalie said. “I think [the Silverlining Buddy System] is a very interesting and fun concept and perhaps, even after COVID, it would be good to keep it up.” 

Nikki became involved in the program through Companions to Elders, a community service program she helps coordinate for her university. Nikki relays that “[the experience] has made me insert more perspective into my day to day life, because it’s so easy to get absorbed into the bubble of college, when I’m at college, or of my childhood bedroom which I’ve been trapped in for six months! Leaving that world to talk to someone who is pretty far out of that environment gives me more perspective. Takes me out of my head.”

Leaving that world to talk to someone who is pretty far out of that environment gives me more perspective. Takes me out of my head.”

Emma, another student buddy, is a college senior majoring in biology. She said that volunteering has given her the opportunity to empathize with someone older and wiser, and helped broaden her view of the world. “If Marylin (her buddy), who has lived through many ups and downs in history still has hope that we’ll go back to normal day to day life, and is still enjoying each day; I think that just shows that we all should be thankful for what we can do and what we do have during this time.”

The Silver Lining Buddy System offers a unique opportunity that provides a meaningful connection during a time when many of us are feeling disconnected. It should serve as a role model to spawn similar programs. 

Written & Reported by Giovi Hersch
Edited by Dr. Jacki Hart

Long-Haul COVID: We Need to Do Better

Symptoms from COVID-19 can last many weeks, even months, and manifest in strange and unexpected ways. In Britain, the National Health Services (NHS) has formed clinics for long-covid, as they call these persistent cases, as well as support groups. The United States (U.S.) should follow their lead. At the moment, in the U.S, where we refer to prolonged symptoms as Long-Haul Covid, people have been searching for and forming their own support groups through Facebook and Slack. By reaching out to other COVID-19 survivors with symptoms lasting two weeks or longer (the definition of “long-haulers”), people have even taking research into their own hands via surveys amongst the group. 

While people experiencing long-COVID report a list of 64 or more potential lingering symptoms, the top 10 include shortness of breath, chest tightness, fatigue, chills, sweats, body aches, dry cough, low grade fever, headache, and “brain fog” or difficulty concentrating.  

Of note, “long-haulers” who have persistent symptoms generally did not require hospitalization when they first caught COVID-19.

There is much to learn about this condition; with “citizen scientists” taking the lead, they are learning from one another. But, similar to England, the medical community in the U.S. should be finding ways to better support and care for COVID-19 sufferers with long-term complications.

Do you have a story to tell about your symptoms of long-haul COVID-19? Please share with us here.

 By Jacki Hart, MD

COVID Poses Unique Challenges for International Students, Minseo Reflects

My Covid Story:

Minseo shares her story as an international boarding student from South Korea at the start of the COVID-19 pandemic. Early on, when things looked worse in her home country, she and her parents grappled with what made more sense: staying in the United States (U.S.) or going home. Thankfully, Minseo made the decision to return to her own country because the statistics quickly began to turn.

COVID Poses Unique Challenges for International Students, Minseo Reflects

Mid-February 2020, I sat at a table in my school’s grand dining hall and received a call from my parents. They expressed concerns (that I shared)  about my going home to South Korea over the upcoming spring break. At that time, Korea was experiencing hundreds of Coronavirus cases each day, with numbers continuing to rise. Despite our initial trepidation, I soon found myself bundled up at the Incheon Airport waiting for my parents to pick me up to drive home, along with my luggage, hand sanitizers, ethanol spray, and three packs of KF94 masks — including the one I was wearing.  

Spring term of my freshman year was a mess, but I felt relieved about the early decision to return to my family before strict travel restrictions ensued a couple weeks after my arrival.

Since the outset of the pandemic, I’ve been grateful for South Korea’s well-designed healthcare systems. For example, anyone, including foreigners, were reassured that they could enter the hospital and receive treatment if they tested positive for the virus. They also  quickly established systems and processes that halted the spread of COVID-19 and reversed that initial spike, including successfully stopping a recent outbreak that could have led to a resurgence.

Pros and Cons of Remote Learning

Meanwhile, the pandemic was heating up in the U.S. causing nationwide school shutdowns from March through May 2020. Now faced with learning from home unexpectedly during my spring term, I took the time to explore areas that I don’t normally have the luxury to examine due to a packed daily school schedule. I researched architectural design like the Burj Khalifal; watched Netflix movies, COSMOS, and quantum mechanic documentaries; and reached out to teach coding to students. I tried to make the best of what could be done during self-quarantine.

I took the time to explore areas that I don’t normally have the luxury to examine

However, as an international student in South Korea, I faced many difficulties during that semester. Due to the 13-hour time difference between the Eastern Standard Time (EST) operations for my school courses and Korean Standard Time (KST), I grappled with the arrangement of my schedule: Should I wake up early before dawn or should I just stay up through the night for my 4 AM class and then sleep until noon?

Should I wake up early before dawn or should I just stay up through the night for my 4 AM class and then sleep until noon?

With continual disruption to my sleep-wake cycle, and countless sleepless nights, during spring term and into summer break, I never settled into a routine, healthy sleeping pattern. Instead, I struggled through sporadic intervals of disjointed sleep and rest. When I got the chance to connect with friends from either South Korea or the U.S. over video calls, we lamented about our collective fatigue, mental stress, and interrupted sleep schedules. It was clear that many international, as well as regional U.S. students, were having similar troubles.

COVID-19 Sparks Innovation

While the COVID-19 pandemic has brought much suffering, it has also brought some pockets of hope and opportunities

While the COVID-19 pandemic has brought much suffering, it has also brought some pockets of hope and opportunities, especially in terms of  development in technology and bioengineering. Coronavirus has become a catalyst for scientific initiatives like telemedicine. Along these lines, many inspirations have stemmed from college students and fellow high schoolers who have been discovering solutions to combat the Coronavirus, such as COVID-Map and informative apps. As a problem-solver myself, I wanted to contribute too with my own knowledge about software programming and product-creation.

Together with a close friend from Korea, we designed the DreamCatcher Lab team, entered an artificial intelligence (AI) competition called POSCO 2020 AI Challenge; as participants, we began to develop a smart app and product in order to help patients with partial and chronic insomnia, and anyone having trouble getting a good night’s sleep in general. My own disrupted pattern, as well as many of my friends and schoolmates, was the impetus to search for a solution to maintaining good sleep cycles. In the span of three months, we successfully created the DreamCatcher app with pink noise music therapy, a wireless device, and a novel AI technique, called ElectroCardioGram (ECG) estimation from a PhotoPlethysmoGram (PPG) wave, to help monitor user’s sleep. Ironically it felt like I had insomnia from staying up nights debugging the program; but it was amazing to see the idea become a reality.

Trying to Make Sense of the Inconceivable

As a quantum mechanics enthusiast, I’ve learned to appreciate the unruly subatomic universe as “orderly chaos” — sensible things made up of objects that follow senseless rules. Trying to decrypt the phenomena and reach mathematical proofs, leads to one of two opposite places: either scientific properties with definitive answers or somewhere even more surreal.

The past several months have been the latter: bizarre,  unimaginable, even incomprehensible. As the pandemic and public health crisis impacts all of us globally, cyclic relapses of racial discrimination — George Floyd, Breonna Taylor, David McAtee — persist in a fundamentally-corrupt system. Asian gaslighting and violence serve as another inconceivable reminder. Add to that, burning infernos, first in Australia then across the West Coast of the U.S. like some blistering plague. The events collectively unfolding like a morbid tale or tragic playbook. Is there order to this chaos and destruction?  Worse yet, these outcomes probably won’t remain confined to the year 2020.

How Does this Relate to My School?

Following a couple weeks of online learning from Korea, my school is (at least tentatively) reopening for the start of fall term. I’ll be flying back to campus in October. Despite the degree of disaster and upheaval, I’m relieved to see changes in the school’s approach. We now have an Anti-Racist Workshop period in the weekly schedule and have regular talks and interviews about race during assembly. 

Overall, the concept of online zooming for math or even orchestra class isn’t as awkward anymore. With back-to-campus protocols, I’m curious (and a bit nervous) to learn whether the school’s meticulous planning to prevent Coronavirus outbreaks will prevail. Routine dormitory sanitizations, check-ups, food pick-ups and social distancing, meeting restrictions, 24/7 health center operations, and more comprise the plan. Upperclassmen already moved into the school dorms several weeks ago.

Honestly the precautions aren’t nearly enough to put my mind, nor my parents’ and friends’ minds, at ease.

Honestly the precautions aren’t nearly enough to put my mind, nor my parents’ and friends’ minds, at ease. The thought of an influx of hundreds more students to the campus and positive cases continuing to pop up in nearby towns worry me. 

Despite these legitimate concerns, I’m committed to trying, along with my peers, to focus my thoughts and energy on continuing to create, innovate, and solve problems. Taking my cues from visionaries, scientists, activists and classmates, I’ll thrive to make sense of the situation, and to discover solutions. Creating and inventing, like I did with the DreamCatcher, offers the possibility of practical solutions and provides a sense of hope. 

“The past is our present,” as the saying goes. Unravelling the twisted strings and determining viable solutions, from global warming to the battle against new, more-resilient viruses to centuries old and ensconced problems like racism, may sound insurmountable. But, if we’ve learned anything from this pandemic, we definitely ought to try. 

Reported by Anoushka Mahendra-Rajah
Written by Minseo Kim
Edited by Dr. Jacki Hart

Teen Initiatives During COVID-19: Young Adults Support Their Communities

My Covid Story

As the pandemic spread, forcing schools and businesses to close in April, two teenagers in Massachusetts found themselves with time on their hands and a pressing urge to use their skills to help others. With 80% of COVID-19 infections presenting as mild or asymptomatic, masks to prevent the emission of potentially infected particles is crucial to slowing the spread of this disease. Noah Lang (high school class of 2021) and Izzy Klein (high school class of 2020 /college 2025) founded businesses and nonprofits with the aim of making masks as accessible as possible to people in their community. Lang founded the nonprofit Masks4Mass to procure and donate masks to organizations like the Boston Rescue Mission, Margaret Fuller Neighborhood House, and high schools in his area as they have been preparing to reopen. Klein started Masks By Izzy to offer deliveries and pickups of her affordable hand-sewn masks and donate proceeds to the Greater Boston Food Bank.

Recently, Covid-recovery.org talked to Noah and Izzy to better understand what inspired each of them, how they remain motivated, and ways that their ventures have helped others.

Getting Started

Noah: I came up with the idea of founding this nonprofit, Masks4Mass, after I realized how difficult it was to obtain masks, especially early on in the pandemic. I was brainstorming ways that I might be able to help my community and facilitate the reopening of schools. I wanted to do something that was different and meaningful. As a result, I founded this nonprofit with the hope of ultimately contributing to halting the spread of COVID-19

Izzy: I’ve been sewing since 4th grade through after school classes with a friend. And I’ve always loved creating things, helping people, and trying to make things accessible. My background is in political and community organizing, and communications. With those things in mind, I wanted to find a way to help people right now — with the immediate crisis. Being able to produce something that gives back, that’s functional, and that’s keeping people safe at the same time that it also benefits my community was my goal.

Initial Steps

Izzy: I started sewing and the first few masks weren’t great, but I definitely had a foundation. I started giving them to family and friends, and they really liked them. I originally did an order form and I would get crazy high demand every week – like 40 orders. It was getting a little hard to keep up because I would take the orders on Monday, work on them throughout the whole week, and arrange for pickup or delivery on Saturdays. I realized that with the growth, it would be good to have a website. Now, we are in the process of making my site not only a place to buy masks but also other things made by different members of my community. In the meantime, given that college for me is now online, I decided to take a gap semester to work on this. I’m hoping to expand; right now we’re doing a lot of bigger orders for smaller businesses and for family events and stuff like that. It’s been really good and I’ve definitely enjoyed being able to meet different members of my community. 

Noah: I’m definitely planning on continuing this initiative past the summer. As long as the  pandemic continues, I want to help and try to find ways to make an impact on our community. I haven’t really set an ultimate goal because I see this as an ongoing process. My biggest goal is to get masks to schools because this is a vital aspect to reopening. If all students were able to have access to masks and personal protective equipment I think opening schools would be a lot easier. However, it’s been challenging because public schools haven’t been very responsive. I’ve been reaching out to people that I already know first: parents of some of my friends, coworkers of my mother and my father, people from my own school, etc. I’ve set up a donation page on my website. That way, even people who don’t know me personally are able to contribute to Masks4Mass. 

Growing Process & Pains

Izzy: Seeing people wearing their masks definitely makes me super happy. It’s a lot of young families who have been telling me that the masks that we make are really affordable. A lot of people who placed orders when the idea was just being formed said things like, “You know, your mask is the only mask my kids will wear because your kid size fits so well.” That is super awesome and gratifying to hear because I know it’s really hard to work with younger children on this. A lot of wonderful friends from school have been delivering masks for me as well, so I can spend more time sewing. I have received help with cutting fabric and taking orders from different YMCA’s. It’s gratifying to have  a lot of friends and family helping out.  

Noah: One of the greatest challenges with this learning process is that it’s the first time that I’ve ever formed a nonprofit. I had  to learn how to incorporate my nonprofit with the Commonwealth of Mass. Also, in order to receive tax exempt status from the Internal Revenue Service (IRS) I needed to research and learn how that  works. A smaller-scale challenge has been, again, that public schools have been significantly less responsive than private schools, which is somewhat frustrating. But I’m continuing to try to work my way around that. I’m guessing it’s because they have additional regulations. Another obstacle I’ve had is that some of the masks [we’ve secured have been] pretty low quality. They don’t really seal or fit your face well which allows for openings around the sides of the masks. That kind-of defeats the purpose of the mask, of course. Others are just bad quality in general and that’s something I have to work my way around, too. I have been buying a sample batch of masks before making a bulk purchase. That seems to help  solve the quality control problem.

I have been buying a sample batch of masks before making a bulk purchase. That seems to help solve the quality control problem.

Lessons Learned

Noah: I think one of the things that is extremely important to me and a main takeaway is the importance of community and the willingness to help others. Prior to this, a lot of the work I had done for my community was with my school; this has felt different because it was organic and not a requirement. I think that’s something that I’m trying to tap into — sympathizing with others and willingly helping them out. This organization has helped me solidify that mindset. As a personal thing, the formation of this nonprofit has taught me a lot about the process of how you incorporate a non-profit into the Commonwealth, and the different steps that you need to take in order to have a legal nonprofit and get tax-exempt status. Another aspect that has also been interesting is accounting. Over the past couple months, I’ve done a lot of accounting because of the fundraising. It seems likely that I’ll use many of these skills later on in my life and it’s [an interesting opportunity] to start learning them now. Overall, I think that running this nonprofit is not only a great way to support my community. It has also taught me a lot about nonprofits in general and the importance of taking an initiative to help others.

Izzy: We’ve never really lived through a time like this in recent modern history. So, I think it’s super important to make sure that we are being intentional about helping others. I feel very privileged – which is not necessarily a great feeling – but I think it also gives me this kind of responsibility to give back, because I have the resources to be able to do that. It’s time to just make sure that we are all being mindful with our choices and with our actions. If you are in a position where you’re comfortable right now, and you don’t really have that much worry in your life, start thinking about ways that you can give back. Whether it’s helping at a shelter or food pantry, or donating somewhere, we need to make sure that we are constantly asking ourselves: What are small things that we can do that, in turn, will have a positive effect on society?

Reported by Anoushka Mahendra-Rajah
Edited by Dr. Jacki Hart

Lifelong Dream and Art Store Nearly Destroyed by Pandemic

My Covid Story:

In the writing of Margaret’s story, Congress continues to debate another much needed round of government support. The House passed a second Coronavirus, Aid, Relief, and Economic Security (CARES) Act in mid-May. The Senate response as of September 9, 2020 is for a much lower amount. Negotiations persist.

Lifelong Dream and Art Store Nearly Destroyed by Pandemic

Even for those who have not contracted the virus, the COVID-19 pandemic has impacted all of us profoundly. Seeing friends and family is a challenge; attending school via zoom or a hybrid model is awkward and draining; travel is non-existent; and so much more. For many, the sacrifices have been life altering. Take Margaret, for example, the sole owner of an art store one hour outside of Philadelphia. Phoenix Art Supplies and Framing has been Margaret’s pride and only source of income for 12 years. 

Like many other small business owners, Margaret’s routine and livelihood were abruptly turned upside down as Pennsylvania and much of the United States (U.S.) shut down all non-essential businesses. To label the dream business that Margaret built “non-essential” seemed understandable but felt heartbreaking. Aren’t our politicians always talking about small business as “the backbone of America?”

But, worst of all, closing her store meant that Margaret had no income for the foreseeable future. The fear and uncertainty felt unbearable.

"The first thing I did was apply for every loan I could find"

“The first thing I did was apply for every loan I could find,” Margaret explained since she needed to pay her employees and find money to support herself and her storefront, including rent and utilities (at least she assumed at that time). The two main sources available were the Paycheck Protection Program (PPP) loan and the Economic Injury Disaster Loan, both of which were passed as part of the large stimulus package, known as the Coronavirus Aid, Relief, and Economic Security (CARES) Act provided by U.S. Congress in response to the unprecedented pandemic, and administered by the Small Business Association (SBA).

“Poster Child” for PPP, But Process Failed Margaret

PPP is a forgivable loan if business owners follow a certain set of regulations, the main one being that they continue to pay their employees. The bipartisan Bill approved an initial $350 billion for the loans, which was quickly expended. Then, an additional $310 billion was approved for a second wave of applications. Businesses with fewer than 500 employees qualified for the loan and each business could receive up to $10 million; applications were submitted to the business’s local bank and then processed by the SBA. 

Margaret completed her PPP application within hours of its online availability to the public. Her business checked all of the necessary boxes; her store is even woman-owned, which was supposed to take priority. Yet, for nearly four months, her application read as “processing” by the SBA. “It was unbelievable watching people get [the PPP loan] and me waiting for three and a half to four months with no news. My business was the poster child for that loan!” Margaret exclaimed. She felt bewildered by the delay and the lack of communication. 

And Margaret was not alone. Reports in May revealed that 38.1% of small businesses never received any assistance from the PPP, despite meeting all federal requirements. While Margaret understands that setbacks and delays are likely with the sudden rollout of such a large stimulus program, it was infuriating that the process wasn’t smoother and easier. Margaret, her few employees, and hundreds of thousands of small businesses like hers were relying on this package to survive. Margaret felt let down by the government.

Margaret, her few employees, and hundreds of thousands of small businesses like hers were relying on this package to survive

Creating Ways to Survive

Scared and still waiting for the PPP loan, Margaret harnessed her small business acumen and ingenuity to scramble together an online presence. This has allowed her customers to purchase items from the website and pick up curbside from the storefront. Unfortunately, without the PPP loan Margaret had to let go of two employees. She was super sad about this loss and disappointment. She hated letting them down, especially at a time when work is very hard to secure. Not receiving that PPP in a timely fashion led to a domino effect for Margaret, her employees, and their respective families. 

The online presence helped pull in some revenue. But Margaret could not fully support the business or herself with curbside pickup alone. About one month into lockdown, with still no responses from the SBA about the PPP or Economic Disaster loans, she created a GoFundMe page. Margaret had initially asked for $3,000 on GoFundMe, a fundraising platform for anybody who wants to start a page with a 2.9% fee. She was astonished to receive nearly $9,000 in donations – three times her initial ask! “It was really moving because it was all local people and my community pulling through for me,” Margaret remarked. Margaret feels immense gratitude to her community; they supported her and helped carry her small business through this dire time. Without them, Margaret believes that she would have been lost.

It was really moving because it was all local people and my community pulling through for me,

Loans Finally Come Through, But Complications Persist

Almost all of Margaret’s funding came from her GoFundMe page until nearly four months into the pandemic. Then, she finally received a notice from the SBA saying she was approved via the Economic Injury Disaster Loan that would provide $10,000. Margaret accepted the loan because her store was still not able to open. Five days later, she received another notification of an additional county grant for $10,000. Unfortunately, Margaret’s sense of relief was short-lived as the SBA informed her that she could only accept one of the two offers. Since the Economic Injury Disaster loan would mean she would eventually have to pay back the $10,000, Margaret tried to return that loan and take the $10,000 grant. That attempt has been a futile fiasco. “I’ve tried to call and email and I cannot reach anybody at SBA. It’s awful because I am basically losing $10,000,” Margaret said in exasperation. 

Several more months have passed by and Margaret has still not heard back from the SBA; therefore, she’s been unable to accept the grant and return the loan. As of early July, her store was allowed to reopen with many precautions taken to protect herself, her remaining employees, and her customers. She is very thankful that her community continues to support her shop through this intensely difficult time. But Margaret (like millions of others) is well aware of the chance for another shutdown. She continues to try to foster ways to transition her business to a greater online presence. When asked about the future, Margaret said she remains extremely worried, but will continue to maintain her curbside pickup and has set up a process for remote framing options. 

We are grateful to Margaret for sharing her story. The difficulty she’s experienced and her struggle to adapt her small, independent business is relatable by millions of Americans. Supporting local businesses like Phoenix Art Supplies and Framing is critical at this time. Do you have a story to tell about how the COVID-19 pandemic has impacted you? Share with our team and we may contact you for further details.

Written & Reported by Katarina Ho
Edited by Dr. Jacki Hart

Controlling Coronavirus in Tight Living Quarters

My Covid Story

Facilities with people living in close quarters are at high risk of spreading infection rapidly to one another, including COVID-19. Nursing homes, prisons, shelters, and dormitories share the feature of close proximity and, therefore, rapid risk of spread. Nursing homes and prisons have the added risks of older residents and a disproportionate percentage of minorities, respectively. One family shelter in Iowa shares their protocols that allowed them to keep the current coronavirus at bay in their facility until very recently. While factors differ between the types of institutions mentioned, sharing ideas of how to protect residents can translate to helpful lessons for each setting.

Controlling Coronavirus in Tight Living Quarters

Since early March, COVID-19 has relentlessly infiltrated thousands of nursing homes, homeless shelters, prisons, and other tight-knit facilities across the United States (U.S.). The impact of the virus on these and other vulnerable populations has been overwhelming. In the state of Massachusetts, for example, the Department of Health noted that 384 out of roughly 400 long-term-care facilities in the state had been affected, resulting in more than 4,100 deaths.  A similar story of infection and death has played out in other parts of the country as well. Although organizations such as the Centers for Medicare & Medicaid Services (CMS), have released a series of guidelines aimed to reduce the impact of COVID-19 on long-term care facilities, many institutions continue to struggle. The media has focused heavily on the large number of facilities with rampant spread and poor outcomes from the virus. But an equally important question is: how have a small number of facilities managed to keep the deadly virus out?

But an equally important question is: how have a small number of facilities managed to keep the deadly virus out?

Jaymes Sime serves as Executive Director (ED) of MICAH House, “a homeless shelter with two priority populations: families… and single women,” based in Council Bluffs, Iowa that had managed to remain COVID-free until late July. At the time of our conversation, Sime reported that they had not had a single case of COVID-19. When discussing their strategy for keeping MICAH House safe, Sime details three main areas of focus that contribute to that success: Design, Timing, and Communication.

Design: As Sime described, many shelters for people experiencing homelessness share a large open bunkhouse and/or common spaces for mealtimes, restroom facilities, and, at times, waiting lines for programs or services offered by the facility. Sime explains how that set up is “not conducive for [controlling] any type of virus,” not to mention the lack of privacy and dignity. 

MICAH House offers a different structure. Although some rooms in the shelter are shared, five-foot dividers between each bed help maintain discretion while also limiting the transmission of illness among residents. Additionally, the number of women allowed in the facility was reduced by 20% at the start of the pandemic, providing spare, private rooms for residents awaiting test results.

Timing: The second part of Sime’s formula for the success at MICAH House revolves around timing. As soon as Jaymes and his team learned of COVID-19, they rallied into action. In early March, a plan to control the virus was set in motion. An eight-page document was written and circulated to outline “internal protocols, [discussion of] social distancing, isolation, and quarantine.” Sime also created a short video for those who process information differently. 

Shortly thereafter, masks were issued to clients and staff, with staff setting the example by wearing masks throughout the day. In addition, stations were set up with hand sanitizers and thermometers. According to Jaymes, the practices and procedures are continuously reviewed and reinforced in a variety of ways, ensuring that both staff and clients appreciate the significance of the situation, including the virulence of the contagion, the ease and rapidity of its spread, and the importance of caring for and respecting one another. Sime believes that the swift call to action played a critical role in keeping COVID-19 at bay. Both the seriousness and the clarity of measures taken left no doubt for those living or working at MICAH House.

Sime believes that the swift call to action played a critical role in keeping COVID-19 at bay.

Communication: The MICAH house approach has prioritized both internal and external communication. Within the shelter, Sime consistently reiterates key messages to staff members and emphasizes the importance of open communication up and down the chain of command; this way, matters that arise can be quickly and easily addressed.

The culture of extra discussions and check-ins took some adjustment, patience, and understanding on the part of the staff.

The culture of extra discussions and check-ins took some adjustment, patience, and understanding on the part of the staff. For example, back in March, a woman in the shelter showed potential symptoms but felt reluctant, and nervous, to take a test. The staff member informed an on-call supervisor who addressed the situation but failed to immediately communicate the client’s concerns to ED Sime and others on the team. Luckily, the woman ultimately agreed and tested negative; but from that point on, Sime underscored that erring on the side of too much communication (rather than too little) was vital. He informed the staff that when issues arise, “…whatever the time. I need to be in the know.” That way he can make sure that the situation is managed as safely and effectively as possible, protecting all of the residents and staff, and minimizing viral exposure and spread.

Communication with shelters near MICAH House has also been extremely important in helping to curb the impact of COVID-19. The EDs of the five shelters within that same area hold weekly video meetings. This allows local leaders to gauge the risk by knowing the regional data and facilitates learning by each shelter from the actions of others. To date, three of the five organizations have needed to manage cases of COVID-19. Sharing and following best practices has helped ensure prompt action and less severe outcomes than have happened at many other facilities across America. According to Jaymes, “without that collaboration and without the ability to learn from a shelter that actively managed having their whole shelter tested multiple times… we would still be somewhat blinded.” Essentially, these weekly sessions provide Sime and his colleagues with ideas that he weaves into his work with the MICAH House team. 

Internal and external communication complement one another.

Lessons Learned: 

While many long-term-care facilities and shelters around the U.S. have struggled to contain COVID-19 cases and complications, some places like MICAH House have managed to keep the virus out or at least the numbers down to a minimum. Diligence, attention to details, timely response, clear and frequent communication, and sharing of best practices form the components to improve pandemic management, now and in the future.

Written & Reported by Ella Gavin
Edited by Dr. Jacki Hart

Will 21-Year-Olds Learn to Take the Pandemic Seriously?

Doug, a 21-year old college student in Boulder, Colorado (CO), tested positive for COVID-19. Unlike others who have had much more serious cases, Doug was lucky. He only showed symptoms for a single day and, thankfully, never entered a hospital or emergency room. In fact, Doug assumed, at first, that he had the flu. 

Reflecting on his experience, Doug describes his main lessons from his quick brush with coronavirus. Doug learned, in large part, that his peers tend to take COVID-19 for granted. In fact, many in his friend group wound up testing positive, including the person from whom Doug contracted the virus. But few have taken it seriously enough to alter their habits and behaviors. 

Despite having had a smooth, easy course without complications, Doug now recognizes how contagious the virus is and tries to communicate with his friends the importance of wearing masks and taking other precautionary measures. Doug bases his newfound caution on the fact that he was exposed to the virus when in the same room with one or more who later tested positive. In fact, as Doug recounts, he was never in direct contact with an infectious person, just in the general vicinity

Even before having any symptoms, Doug sought testing because of this exposure. He found it difficult to locate a site; then, serendipitously, he developed symptoms one day later, which lasted less than 24 hours. Doug was quarantining from the time that he learned of the exposure. Three days after his symptoms began, his test results came back positive. His housemates and several friends, who had also been at that party, all tested positive; but no one had more than short-lived, mild symptoms.

While quarantining with housemates, their community came through with support. Other friends without COVID-19 delivered groceries and other supplies. The day that Doug shared his story with Covid-Recovery.org, he was scheduled to get his follow up test back the next day. He was anxious to know the results because he had stayed out of work for nearly a month. 

few his age seem to be taking the virus seriously enough.

When probed about the opinions of COVID-19 held by his peers, Doug described stories similar to what is shown in popular media: few his age seem to be taking the virus seriously enough. Those in Boulder, CO are still holding house parties, and while they wear masks when entering shops and bars, which are mandated, they’re not participating in strict social distancing. Doug believes that people his age might be convinced to change their behavior if their return to college was in jeopardy. Universities, like all schools throughout the country, are making a range of decisions based on the risks within their regions and many other factors. Part of the problem is that the delay between the risky behaviors that might spread the infection and any rise in rates could preclude students from connecting their actions and the schools’ decisions or altered policies. 

As far as Doug’s own behaviors — even though his case was mild, he carries an important message for people of all ages: listen to your doctors and wear your masks! 

Written & Reported by Robert Shepard
Edited by Dr. Jacki Hart

Katarina’s Choice is Hard but Clear: Protect Her Dad

My Covid Story

Being a 21-year-old college student during a pandemic means, for many, worrying about classes, jobs, and friends. I’m lucky to have access to fast, reliable internet and a quiet, safe place where I took the remainder of my UCLA courses online. For me, the hardest change has been the ongoing worry about ways that I might infect my 74-year-old father since moving back home.

There was little known about the novel COVID-19 virus in the early days, other than the increased risk for serious infection and even death for those older than age 70 or with underlying medical conditions. As I carried those facts in my brain, making my way to LAX on route to live with my parents in Rhode Island, I had a panic attack. Although I was fully covered with latex gloves, an N95 mask, sweatshirt, and sweatpants, and even braided my hair up to be out of the way, the following mantra repeated in mind: “I will never forgive myself if I am the reason my family gets sick.” My plane was crowded, LAX was crowded, and I did not take off my mask for a single second of the 6½ hour flight home. As soon as I got out of the airport I removed all of that disposable PPE (personal protective equipment), threw it into a trash bag, and jumped in the car with my mom.
After two weeks of being home, I was relieved to find that I never showed symptoms nor did anyone in my family. Once those two weeks passed, I still avoided seeing any friends or relatives other than my mom and dad for roughly a month. We all agreed that I would do the food shopping to minimize their potential exposure. Once a week, I put on my mask and gloves armed with hand sanitizer in my pocket and head to the grocery store. I continue to wash everything from the grocery store or leave non-perishable foods outside for a week. My philosophy has been that I can’t be too cautious to protect my parents.
During the lockdown period, the experience was almost easier. There weren’t pressures of choices to make, or friends asking me to go out. The protocol, so-to-speak, was clear cut and unwavering. I recognize, and hope that I don’t take for granted, my privilege of having access to shelter, food, WiFi, privacy, and space. While the stay-at-home order was in place, I didn’t have to worry about going anywhere because there was nowhere to go. The risk of my dad getting infected was minimal as long as I stayed inside. That helped me feel calm and in control.
But now, even with reported cases decreasing in Rhode Island, when I go for a run outside and pass by a biker without a mask, I feel a pang of dread wondering whether there is a chance that I just exposed myself to coronavirus. Sometimes, my anxiety eats at me for hours, admonishing myself for making the choice to go running. I know that the chance of contracting coronavirus outside while exercising with a mask on is very low; but when living with someone who could die if they get infected, worrisome thoughts fly through my head daily. Honestly, I feel exhausted.

I’m a 21-year-old college student; it’s summer, and while all of my friends go to bars and beaches, I stay home.

Now that Rhode Island has opened up its restaurants, bars and beaches, it has been more stressful. I’m a 21-year-old college student; it’s summer, and while all of my friends go to bars and beaches, I stay home. For me, the choice isn’t easy, but it is clear: my dad’s life takes precedence over my ability to socialize and hang out with friends. I think the hardest thing for me has been trying to keep everybody happy. Running or walking outside is essential for my own mental health; but I worry and feel strongly about not doing anything to put my parents at risk. It is challenging to explain to my friends why I don’t feel comfortable going out or spending time with them. People don’t always understand or fully appreciate my concern for my parents’ health.
It hasn’t been the summer I expected; that is true for most people. Removing myself from my usual social life and watching it happen without me can take a toll. It’s difficult to watch my friends having fun as I tune in from a screen. But I feel clear that I would rather miss out on a beach day than cause any harm to my Dad.