Though African Americans are being hospitalized for COVID-19 at more than triple the rate of white Americans, wariness of the new vaccine is higher in the Black population than in most communities. The U.S. Centers for Disease Control and Prevention highlighted communities of color as a “critical population” to vaccinate. But ProPublica found little in the way of concrete action to make sure that happens.
And it could be hard to track which populations are getting the vaccine. While the CDC has asked states to report the race and ethnicity of every recipient, along with other demographic information like age and sex, the agency doesn’t appear ready to apply any downward pressure to ensure that such information will be collected.
In state vaccination registries, race and ethnicity fields are simply considered “nice to have,” explained Mitchel Rothholz, chief of governance and state affiliates for the American Pharmacists Association. While other fields are mandatory, such as the patient’s contact information and date of birth, leaving race and ethnicity blank “won’t keep a provider from submitting the data if they don’t have it.”
In the initial stages, vaccines will go to people who are easy to find, like health care workers and nursing home residents. But barriers will increase when distribution moves to the next tier — which includes essential workers, a far larger and more amorphous group. Instead of bringing the vaccine to them, it’s more likely that workers will have to seek out the vaccine, so hesitancy and lack of access will become important factors in who gets the shots and who misses out.
“There are individuals who are required to be on the front line to serve in their jobs but perhaps don’t have equitable access to health care services or have insurance but it’s a challenge to access care,” said Dr. Grace Lee, a professor of pediatrics at Stanford University School of Medicine and member of the CDC’s Advisory Committee on Immunization Practices, which is tasked with issuing guidance on the prioritization of COVID-19 vaccine distribution. “We can build equity into our recommendations, but implementation is where the rubber meets the road.”
Hesitancy is Rooted in Medical Exploitation and Mistreatment
About a quarter of the public feels hesitant about a COVID-19 vaccine, meaning they probably or definitely would not get it, according to a December poll by the Kaiser Family Foundation. Hesitancy was higher than average among Black adults in the survey, with 35% saying that they definitely or probably would not get vaccinated.
Mistrust of the medical community among people of color is well-founded, stemming from a history of unscrupulous medical experimentation. The infamous Tuskegee study, conducted from 1932 to 1972 by the U.S. Public Health Service, still looms large in the memories of many Black Americans, who remember how researchers knowingly withheld treatment from African American sharecroppers with syphilis in order to study the disease’s progression.
But the injustices aren’t confined to the past. The National Academies’ Institute of Medicine has found that minorities tend to receive lower-quality health care than white counterparts, even when adjusting for age, income, insurance and severity of condition. Black Americans are also more likely to be uninsured and utilize primary care services less often than white Americans.
“It’s not just about history. It’s about the here and now,” said Dr. Bisola Ojikutu, an infectious disease physician at Massachusetts General Hospital. “People point to racial injustice across the system. It’s not just hospitals; people don’t trust the government, or they ask about the pharmaceutical industry’s profit motive. From the very beginning, Black and brown people are marginalized from the enterprise of research. They think: ‘So few people look like us in research, industry and academia, why should we trust that someone at that table is thinking of our interest?’”
When it comes to vaccinations, the consequences can be grave. Black and Hispanic people are less likely to get the flu shot than white people, according to the CDC. At the same time, Black Americans have the highest rate of flu-associated hospitalizations, at 68 people per 100,000 population, compared to 38 people per 100,000 in the non-Hispanic white population.
Health officials have tried to assuage vaccine concerns in the traditional way, by publicizing specific individuals receiving the shot. The U.S. began its mass immunization effort by injecting a dose of the Pfizer-BioNTech vaccine into the left upper-arm of Sandra Lindsay, a Black woman and critical care nurse in New York.
Meanwhile, an onslaught of memes and conspiracy theories characterizing the vaccine as harmful are making the rounds on social media. One reads, “Just had the covid-19 vaccine. Feeling great,” along with the picture of the character from the 1980 movie “The Elephant Man.” Another image circulating on Twitter features the photos of three Black people and claims they are suffering from Bell’s palsy due to the vaccine. The Twitter user who shared the image asked followers, “still want those Tuskegee 2.0 genocide vaccines?”
It may only take one or two negative headlines to further sow fear, said Komal Patel, who has 16 years of experience as a pharmacist in California. After two health care workers in the United Kingdom experienced allergic reactions to Pfizer’s vaccine, Patel said she saw anxiety spike on social media, even though regulators have said that only people with a history of anaphylaxis — a severe or life threatening immune reaction — to ingredients in the vaccine need to avoid taking the shot. “Just two patients, and here we go, there’s all this chatter.”
Key States Lack Concrete Plans to Promote Vaccines in Black Communities
It falls to states to make sure their residents of color are vaccinated. But the speed at which the vaccine needs to be disseminated means that states haven’t had much time to plan communications efforts, said Lee, from CDC’s advisory group. “How do we make sure messaging is appropriate? You may want to emphasize different messages for different communities. We don’t have the time for that.”
ProPublica found that few states can articulate specifically what they are doing to address vaccine skepticism in the Black community.
Texas, Georgia and Illinois’ state plans make no mention of how they plan to reach and reassure their Black residents. Black communities make up between 13% and 33% of the population in the three states, according to data from the U.S. Census Bureau. None of the three states’ health departments responded to requests for comment.
California’s state plan includes “a public information campaign … to support vaccine confidence,” but does not provide details apart from the state’s intention to use social media, broadcast outlets and word of mouth. In an email, the California Department of Public Health did not provide additional information about outreach to Black residents, only saying, “this is an important issue we continue to work on.”
A spokesman for New York’s Department of Public Health said the state has been working since September to overcome hesitancy with expert panels and events like Gov. Andrew Cuomo’s November meeting with community leaders in Harlem to discuss concerns with the Trump administration’s vaccine plan, specifically for communities of color.
“Governor Cuomo has been leading the national effort to ensure…black, brown and underserved communities have equal access to, and confidence in, the vaccine,” a Saturday statement said.
Dr. Georges Benjamin, executive director of the American Public Health Association, said: “Media outreach is not enough. TV ads are one thing, but usually public service announcements are at midnight when nobody is listening, because that’s when they’re free.” Normally, public health officials go to barber shops, beauty salons, bowling alleys and other popular locales to hand out flyers and answer questions, but due to the pandemic and limits on congregating, that’s not an option, Benjamin said, so officials need to plan a serious social media strategy. That could involve partnering with “influencers” like sports figures and music stars by having them interview public health figures, Benjamin suggested.
Dr. Mark Kittleson, chair of the Department of Public Health at New York Medical College, said he’s not surprised to hear how vague some of the state health plans are, because states often focus on providing high-level guidance while county or regional level health departments are left to execute the plan. But he said specific efforts need to be undertaken to reach residents of color. “Spokespeople for the vaccination need to be a diverse group,” Kittleson said. “Dr. Tony Fauci is fantastic, but every state needs to find the leading health care experts that represent the diversity in their own state, whether it’s Native American, African American or Latino.” Kittleson also suggested partnering with churches.“Especially in the African American community, when the minister stands up and says, ‘Folks, you need to take your blood pressure medication and take care of yourself,’ people listen to that,” he said. “The church needs to be brought into the fold.”
Maryland’s state plan acknowledges the distrust among Black and Latino communities as well as rural residents, and says it will aim to tailor communication to each group by working with trusted community partners and representatives of vulnerable groups. A Department of Health spokesperson said in an email that “as vaccination distribution continues to ramp up, we urge all individuals to get the vaccine.”
Florida’s written plan includes a messaging strategy for everyone in the state, but does not specifically address the Black community. A “thorough vaccination communication plan continues to be developed in order to combat vaccine hesitancy,” a spokesperson for the Florida Department of Health said in response to ProPublica’s queries.
In North Carolina and Virginia, however, health officials started preparing months ago to reassure residents about potential vaccines. North Carolina formed a committee in May with leaders from marginalized communities to guide the state’s overall response to the pandemic. Vaccine concerns were a priority, said Benjamin Money, deputy secretary of health services for North Carolina’s Department of Health and Human Services.
The politicization of the pandemic has mobilized the Black and brown medical scientific community to dig into the research and how the vaccines work, Money said, “so that they can feel assured that the vaccine’s safe and it’s effective and they can convey the message to their patients and to their community constituents.”
The committee is advising North Carolina officials on their vaccine messaging and hosting a webinar for Black religious leaders. Similarly, the Virginia Department of Health has staff devoted to health equity across racial and ethnic groups and is putting on a series of town hall-style meetings speaking to specific communities of color.
Black residents in Virginia have expressed concerns about how rapidly the early vaccines were developed, said Dr. Norman Oliver, Virginia’s state health commissioner.
“It all boils down to telling people the truth,” Oliver said. “The first thing to let folks know is that one of the reasons why these vaccines were developed so quickly is because of the advances in technology since the last time we did vaccines; we’re not trying to grow live virus and keep it under control or do attenuated virus and develop a vaccine this way.”
In addition to promoting reliable information, Virginia health officials hired a company to monitor the spread of vaccine misinformation in the state and to locate where falsehoods appear to be taking hold, Oliver said. The state hopes to target its communications in places where distrust is most intense.
The CDC has set aside $6.5 million to support 10 national organizations, according to spokesperson Kristen Nordlund. The funds are “to be disbursed by each organization to their affiliates and chapters across the country so they may do immunization-focused community engagement in the local communities they serve,” Nordlund said in an email. She didn’t respond to questions on whether the funds had already been disbursed and to which organizations.
Data Collection on the Race of Vaccine Recipients is Likely to be Incomplete
Every state has a vaccination registry, where data on administered shots is routinely reported, from childhood vaccinations to the flu shot. What’s new in this pandemic is that the CDC has requested all the data be funneled up to the federal level, so it can track vaccination progress across the nation.
“Race and ethnicity data should be recorded in states’ immunization data, but we do not know how reliably it is collected,” said Mary Beth Kurilo, senior director of health informatics at the American Immunization Registry Association. “We really don’t have good data on how well it’s captured out there across the country.”
Many immunization records are fed into the state’s registry directly from a doctor’s electronic health record system, Kurilo said, which can present technological stumbling blocks: “Is [the data] routinely captured as part of the registration process? Can they capture multiple races, which I think is something that’s become increasingly important going forward?”
When asked about historic rates of compliance and how they planned to gather information on race and ethnicity of vaccine recipients this time, health departments from Georgia, Texas, Illinois, Florida and California didn’t respond.
Maryland’s state plans indicate it intends to use information gathered through its vaccine appointment scheduling system, including demographic data gathered from recipients, to direct its communication outreach efforts. The Maryland Department of Health, which didn’t provide more detailed information, said it is “currently exploring all options as far as vaccine data reporting.”
North Carolina’s immunization records system routinely collects race and ethnicity information, and a spokesperson told ProPublica it has that type of demographic data for 71% of people in the system. Stephanie Wheawill, director of pharmacy services at the Virginia Department of Health, said that providers will be “asked to record that information” but didn’t elaborate on how the department planned to encourage or enforce compliance.
Data fields for vaccine recipients’ race and ethnicity are standard in New York, a spokesman said. But the state didn’t provide any details about rates of compliance in supplying that data.
“You’ve got to have the data to compare,” said Martha Dawson, president of the National Black Nurses Association and an associate professor at the University of Alabama at Birmingham’s nursing school. “Because if you don’t have the data, then we’re just guessing. There’s no way to know who received it if you don’t take the data.”
There is tension between gathering enough data to understand the extent of the rollout and the possibility that asking for too much information will scare away people who are already leery of the vaccine.
“The biggest concern people have is how will this information be used?” said Lee, from the CDC’s advisory group. “People need to trust that the data will be used with a good intent. “
Rothholz, with the American Pharmacists Association, said there could be ways apart from state registries to estimate vaccine uptake among minorities. “If I’m a community pharmacy in a predominantly African American community, if I’m giving away 900 or 1000 vaccines, you can track penetration that way,” he said. Geographic-based analysis, however, would depend on the shots being distributed via community pharmacies rather than by mass vaccination sites — a less likely scenario for the Pfizer vaccine, the first to be administered, which requires ultracold storage that will be difficult for many small pharmacies to manage.
It Will Be Up to Doctors and Community Leaders to Encourage Trust
The best way to help a worried individual, whether scared about data collection or the vaccine itself, is a conversation with a trusted caregiver, according to Dr. Susan Bailey, president of the American Medical Association.
“Time and again it’s been shown that one of the most valuable things to encourage a patient to undertake a change, whether it’s stopping smoking or losing weight, is a one-on-one conversation with a trusted caregiver — having your physician saying, ‘I took it and I really want you to take it too,” she said. “But patients have to have the opportunity to ask questions, and not to be blown off or belittled or feel troublesome for asking all their questions.”
“If someone says that they’re afraid of being a guinea pig, maybe drill a bit deeper,” Bailey suggested. “Ask, ‘What are you concerned about? Are you concerned about side effects? Are you concerned that not enough people have taken it?’”
The American Academy of Family Physicians uses the mnemonic “ACT” to guide their members in conversations with patients of color, president Dr. Ada Stewart said in an email: “Be Accountable and Acknowledge both historical and contemporary transgressions against Black, brown and Indigenous communities. … Communicate safety, efficacy and harms such that individuals can weigh their own personal risk to potential benefits, and exercise Transparency with regard to the development of vaccines and the distribution process.”
David Hodge, associate director of education at Tuskegee University’s National Center for Bioethics in Research and Health Care, urges Black and brown leaders such as pastors and community organizers to take control of the messaging right now and not wait for their local governments to tackle the issue.
“We’re not in a position right now to be patient. We’re not in a position to sit on the sidelines, we have to make it happen.”
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In a year in which so many nurses displayed bravery, suffered hardships, and shone in countless ways, DailyNurse might easily have featured a “Nurse of the Day” instead of a Nurse of the Week.
Nurses have always gone the extra mile to communicate with patients and make them feel more comfortable and cared for, and we all know former patients who were so inspired by their nurses that they decided to enter the profession themselves. As 2020 raised the curtain on the Year of the Nurse, though, no one could have anticipated it would be a watershed year in which nurses became global icons of hope and courage.
Whether You’re a Hero, or Merely Awesome, Take a Bow…
The public has long admired nurses, but this year, the world has watched nurses brave the pandemic to work in seemingly impossible conditions, act as stand-ins for patients’ absent families, and leave home to speed to the relief of overwhelmed hospitals all over the US.
Nonetheless, many of our 2020 Nurses of the Week (NotW) eschewed the word “hero.” If you glance at remarks from our 2020 Nurses of the Week, you might note that while they take pride in their work, few sound like they are ready to accessorize their mask with a Superman cape. Naturally, they are happy to see their work recognized, but nurses constantly go out of their way to make patients feel less frightened and alone. As frontliner Tabatha Kentner said, “This is what we do. This is why we’re here.” Nurses save lives—and when they cannot, they comfort patients in their final hours and console distraught families. It’s not an occasional phenomenon; it is an everyday occurrence. The name and photo in Wednesday’s NotW feature could easily be your own because your expertise and empathy make you a Nurse of the Week every day of the year.
On the last Wednesday of 2020, DailyNurse salutes the Nurses of the Week who made their mark during the Year of the Nurse!
Great (and Caring) Communicators
A recurring theme is nurses who use their unique talents to raise patients’ and staff members’ spirits. Some, like Marc Perreault and Lori Marie Kay, shared their musical gifts. At Lenox Hill Hospital during the height of the New York City outbreak, Emily Fawcett helped boost morale in her ICU by meeting with staff for positive-thinking “hope huddles” before starting their shifts.
Danielle Fenn applied her language skills to comfort non-English speaking Covid patients. Others, like Tabatha Kentner, have been acting as “angels” (the word angel comes from the Greek angelos, which means “messenger”) and facilitating virtual visits so patients and their loved ones can commune even in isolation (and when necessary, say their final goodbyes).
Advocates and Public Servants
2020 was a year in which nurses stepped forward, spoke up, and got involved in public and civic health. Expect to see more of this in 2021 and years to come (we hope!). Metastatic breast cancer survivor Stephanie Walker is tirelessly advocating for cancer patients and patient education in North Carolina. Another indefatigable advocate, Andrea Dalzell, is on a mission to invite wheelchair-bound people to enter the nursing profession.
NYPD’s new Special Victims Unit head Michael King is a veteran SANE—and he is determined to improve the treatment of rape victims by police and other first responders. American Academy of Nursing (AAN) “Living Legend” Mary Wakefield is sharing her public health expertise and experience in the Obama administration with the Biden-Harris transition team.
Another AAN “Living Legend,” 85-year-old Marie Manthey, is promoting frank, open dialogues between Black and White nurses, and calling upon all White allies to combat structural racism and unconscious bias.
Tens of thousands of nurses this year packed their bags and took off to lend a hand in the nation’s hotspots. Reports on horrific conditions in hard-hit city hospitals were a virtual Bat-Signal for many nurses. They stashed extra masks in their suitcases, said goodbye to their loved ones, and flew to the most dangerous hotspots in the country (even nurses who had never been on a plane before!).
Texas nurse Anna Slayton, who parted from her family to spend 77 days on the New York frontlines, felt compelled to help, telling DailyNurse, “I ultimately knew it was my duty.” And in April, after flying from Tennessee to a desolate—but noisily grateful—NYC, ED nurse Kirsten Flanery declared, “I made the right decision on coming up here. I’m ready to make a difference!”
Difficult Takes a Day, Impossible Takes a Week
Many nurses combine massive multitasking efforts with hard work to pursue their studies, and some fight to overcome dire health and financial obstacles in their quest to start a nursing career. Felicia Shaner was so drawn to the profession that she embarked on her nursing studies while living in a homeless shelter… with a toddler and a baby on board! degrees while working as hospital custodians. Rebel NurseJalil Johnson (of Show me Your Stethoscope fame) had spent his last $5 when he enrolled in an LPN program. And Brianna Fogelman had a lung transplant in her junior year of nursing school and took her nursing finals with a tube in her chest.
Is There a Nurse in the House?
2020 was also a year in which nurses acted as first responders in unexpected times and places. Pamela Zeinoun saved the lives of three premature infants after the devastating August 4 explosions in Beirut. Indiana trauma nurse Colby Snyder rushed to the assistance of two people who collapsed in public within a 3-week period: the first had a seizure at her grocery store, and the second fell while Snyder was volunteering at the polls on Election Day.
Former CCN/cardiac care nurse Hollyanne Miley (whose husband is Joint Chiefs of Staff Chairman Mark Milley) is also a good person to have at hand when out-of-the-blue seizures occur. And VA nurse Maria VanHart impressed “official” first responders by her swift, efficient, and empathic treatment of survivors at the scene of a fatal highway accident.
DailyNurse salutes all of its readers, and all nurses. If you know of someone who warrants a Nurse of the Week nod, send your suggestion to email@example.com. Best wishes for a happier, healthier, evidence-based New Year!
Nurse of the Week Stephanie Walker had been a registered nurse for almost 40 years when she was diagnosed with metastatic breast cancer (MBC) in 2015. After working in pediatric intensive care, she had spent the last 15 years as a hospice nurse. Her MBC was asymptomatic, and Stephanie continued to work at the hospice. At the time, she had an average person’s knowledge about MBC: “They said, ‘well, you’re a nurse!’ They assumed I knew, but I knew nothing.”
What did her nursing experience teach her about cancer? “In the pediatric world, I dealt with a lot of pediatric oncology. That’s different, but I used that as my guide when I was confused and didn’t know who to reach out to. I went back to the days when these kids would have to get chemo, and they would get up the next morning—I’m sure they felt like garbage; their hair would be falling out… But you know? They wanted to go to the playroom and play! And that’s where I would go, ‘those kids can do it, and they’re just 4, 5, 6 years old; I’m 57. Why can’t I?’”
Stephanie, now 61, is living in a rural community in North Carolina. Although health issues forced her to leave work in 2018, she has become an active MBC advocate and was recently featured in a video on the Facing MBC Together site. DailyNurse met with her to talk about life with MBC before and during the pandemic.
DN: Has living in a rural area during the pandemic affected your cancer treatment?
SW: “It isn’t bad as far as treatments are concerned. I get my cancer treatment at a community center that’s 25 miles away, and when I talk to the nurse-managers here, they’ve not missed a beat.”
DN: What made you decide to try to locate other MBC patients in your community?
“I’m an easy person to talk to; I’ve never met a stranger. I can easily strike up a conversation with anybody. When I came to North Carolina, I thought, ‘I’m doing well; there’s got to be other MBC patients that… live in NC, who want to get together and do stuff. Not talk about medicine, but you know, have fun.’ I got together an online MBC group and started reaching out through Facebook groups. I had 20-25 people who were members of the group, and we met in the center of the state.”
DN: When did you have to stop working? How did you adjust?
SW: “In February 2018 I was diagnosed with a blood clot on my lung and had a stroke. That was when I lost the job I’d only had for 90 days after we’d moved here [to NC], and I lost my insurance. That was when I started needing mental health support. I wasn’t even close to retiring, and I loved my job—being a hospice nurse. I still keep in touch with some of the families that I met. It wasn’t just a job; it’s a calling from God. I loved what I did; I loved nursing.
I had no income, and I was the primary bread-winner of the family, as my husband’s retired. So, when I started looking for organizations that could help us, I ran across this conference, and they were offering travel grants to get you there. I said to my husband, ‘hey, maybe I can go, and I can learn more about MBC.’ So I went.
That’s when my world really opened up to MBC. I went to my first conference in April 2018, ‘Living Beyond Breast Cancer.’ I walked around that whole conference, I’m sure, like a deer in the headlights. That was my first exposure to a big group of people like me—and a lot of them were African-American women! [Ms. Walker is African American]. I was amazed at the number of people.”
DN: So you’ve since become seriously involved in cancer advocacy and patient education?
SW: “From there on I’ve been advocating and speaking and doing everything I can to get people to take a look out here, eastern North Carolina to the coast area. The more conferences I went to, the hungrier I got to learn more, and I wanted to learn more about research as well. I’ve done a lot of research and medical literacy is a big issue here. Educational levels are very low; it’s heavily farmland. You have people who come in to work the land, and that’s it. There are also a lot of Latinx people who don’t know the language and don’t know a lot about healthcare. And then you have African-Americans, and African-Americans don’t trust the healthcare system for—you know, reasons, and they don’t want to talk about it.”
DN: Cancer is a frightening thing. It’s sort of a cultural taboo, so it’s understandable that some people try to ignore their diagnosis and hope it will just go away.
SW: “It’s one thing to ignore an early stage breast cancer diagnosis, but you can’t ignore a late-stage diagnosis. I mean, I’m at five years. I celebrated myself living with it for five years because being diagnosed with stage 4 breast cancer right out of the gate, even asymptomatic, you’re told [that you have] 36 months. So it’s like, ‘hell no! I’ve got things to do!’ My daughter’s pregnant; I’ve got to see this grandbaby. There are driving forces, but not enough to put my head in the sand.
But just last week I met a lady who has MBC—she goes to the same community clinic that I do, and we’ve met in various online support groups—and she told me that she had progression; the cancer has started to go to her lungs. I said, ‘my goodness. What treatment are you on?’ She said, ‘oh, I don’t know. I show up; they give me my treatment. I sleep while they give it to me, and when it’s over I go about my day.’ And she’s not a young lady. She’s 57 years old. So, to have that kind of attitude… Don’t put your head in the sand; it won’t make you live longer. I’m not saying everyone should embrace it, like I do, but it will kill you quicker if you don’t address it.”
DN: How has the pandemic changed the way you connect with other people with MBC?
SW: “Before Covid came along, there were support meetings. They were for all cancers, but the people who normally show up at those meetings usually are breast cancer patients. This year, I had my heart set on a couple of conferences… The first one was the LBBC (Living Beyond Breast Cancer) Metastatic Breast Cancer conference in April, but Covid came along, and took it away. The conference was virtual. My husband took part in it, too, and he was very pleased with the caregiver aspect. I’ve done a few other virtual conferences. I’ve done ASCO (American Society of Clinical Oncology) and Careers and Cancer—that one is for people who have cancer and are trying to go back to work. There are a few others coming up that deal with MBC, like the MBCRC, the Metastatic Breast Cancer Research Foundation (September 9-11). That one was going to be in Salt Lake City, and of course it got blown away too, so that one’s virtual.
I do a lot virtually, but it’s not the same. You don’t get to see the people you’ve met online, or met at past conferences, and a lot of us don’t go very many places.”
DN: What has daily life been like for you during the pandemic?
SW: “I walk every morning between 6-6.30 (as almost no one is out at that time); I go to doctor appointments. I go to the grocery store occasionally. I wear a mask whenever I go out. But I don’t want all the time I have left to be spent in the house. My husband and I are actually planning a cross-country trip, and that’s going to be a big one for next year. Also, next month a friend of ours has a time-share, and we’re going to spend a week at the beach. We can get takeout and eat in the condo, so we don’t really have to be around other people. I just need to get out.”
DN: How has your health been lately? And has your medical treatment changed during the pandemic?
SW: “As far as cancer is concerned, I’m stable and have been since 2016. I’m still getting my monthly treatments—I’ll be in treatment of course forever—but I’m doing well, considering.
I still go to most of my doctor appointments [in person]. The only telehealth ones that I have are with my psychologist. With Zoom, I can see him, and we can talk, but you miss that… I don’t know. You can see someone’s facial expressions, but you can read a person a little bit better if you’re face to face. I pray that the isolation ends soon; it’s really a drill.”
DN: What would you say to someone who has just been diagnosed with MBC?
SW: “I always want people to know you should take somebody with you to your appointments. Get a notebook and write down your questions beforehand—because when you get there, all bets are off, and you’re not going to remember most of them. Stay off Doctor Google. If you Google everything initially, it will scare you to death. And just have an open, positive attitude.
Ask questions—please ask questions! Don’t take what someone says as the Holy Grail, and don’t let someone steer you into a direction you don’t feel good about. I actually fired one oncologist. Not only do you need to have that open relationship with your oncologist, but their staff is important too. Nine times out of ten, you’re going to talk to the staff before you talk to him or her. If you can’t have a positive, cordial, open relationship with the front staff, you should find somebody else. And you should tell them, ‘I left because your staff sucks.’ You have to find somebody that you’re comfortable with, because you’re going to forge a relationship with that person. They’re going to see you at your best and see you at your worst. You need to find somebody you trust, so you can come out being the best you can.
My first oncologist was the director of the hospice where I worked. He knew how hard I worked, how much I cared, and he knew that quality of life was very important. I asked him, one, ‘have you ever seen anybody with MBC?’—I mean, I didn’t know, and then, ‘are they still living, and how long has that person been living with it?’ And I said, ‘your goal is to make me have the best quality of life for as long as I possibly can.’”
DN: Finally, where should someone with MBC go to find reliable information?
SW: “You need up-to-date, evidence-based material. You can find that at the American Cancer Society, Living Beyond Breast Cancer, and Susan G. Komen. Those are my go-tos. They tell you what questions to ask on your first visit, information on side effects, financial toxicity, mental health—you can find all of that in one area, and they have help lines.”
Stephanie is also an ambassador for Facing MBC Together, a public education and patient support campaign that addresses isolation for people living with metastatic breast cancer (MBC). The Facing MBC Together website includes videos featuring Stephanie and 8 other people of diverse ages and backgrounds as they share insights about the challenges they face, sources of support, and offer words of encouragement for others living with MBC. For more information visit www.FacingMBCTogether.com.
Amid growing concerns about the mental health impact of working the frontlines of the pandemic, clinical psychologist Stephanie Zerwas, PhD is finding a way to help.
Zerwas knew therapists in Chapel Hill, North Carolina, wanted to give back during the COVID-19 crisis. “It’s really hard to see what people are going through and not be able to do anything,” Zerwas told MedPage Today. “There were a lot of therapists who knew that they could sort of cushion the fall of this.”
It was evident that one community needed strong mental health support, and quickly: healthcare workers on the front lines.
Zerwas, who runs a private practice in Chapel Hill, began organizing local therapists to aid the University of North Carolina’s physician mental health program. But as the number of volunteers grew, Zerwas decided to create her own initiative to provide accessible mental healthcare to a wider scope of front-liners.
She named it Project Parachute, and what started as a local movement in North Carolina now has more than 500 volunteer therapists in 37 states, all offering pro bono therapy sessions to front-line health workers — including physicians, nurses, custodial staff, management, and others.
“We have this really intense cognitive load right now, where we’re trying to make the very best decisions we can with all the information that’s being thrown at us,” Zerwas said. She started Project Parachute “to give people the support that they need at the right time.”
Here’s how it works: on the program’s website, volunteer therapists can input their specialty, availability, and how many clients they can take on. When a healthcare worker browses the site, they can search for sessions based on time preference or a therapist’s specialty. They’re not locked in to typical, hour-long sessions. Zerwas said that the project aims to provide flexible support, whether it’s a 30-minute check-in or a text.
Because mental health providers are not licensed to practice across state lines, clients must choose a therapist within their state. The majority of available therapists are located in North Carolina, Zerwas noted.
Project Parachute partnered with Eleos Health, a mental health care technology startup that provided a digital platform to match therapists with healthcare workers at a national level. The firm’s chief clinical officer, Shiri Sadeh-Sharvit, PhD, said the organization is lucky to have the opportunity to make a positive impact. She added that she is proud of the generosity and adaptability of mental health providers.
“Since the outbreak of the pandemic of COVID, clinicians have needed to change the methods in which they practice very quickly,” Sadeh-Sharvit said. “People were able to do so because there was no alternative.”
She said that the company is prepared to provide long-term pro bono services. “There isn’t an end date at the moment,” she said.
Healthcare workers face new and significant challenges during the COVID-19 pandemic, spurring concerns about the long-term impact on their mental health. Jessica Gold, MD, a psychiatrist at Washington University in St. Louis, said that healthcare workers already experienced high amounts of stress before the crisis.
“At baseline, being a healthcare worker has emotional strain and burnout,” Gold said in an interview with MedPage Today. The healthcare worker population is already at risk of higher rates of depression, substance use, burnout, and suicide; a pandemic adds stressors like an increased risk of infection, lack of protective equipment, isolation from family and social support networks, and fear of death, she noted.
Kaz Nelson, MD, a psychiatrist at the University of Minnesota in Minneapolis, said that while healthcare providers are among a very resilient workforce, this crisis deprives front-liners of basic needs according to Maslow’s hierarchy.
“We are being pulled into this state where our basic safety needs are threatened,” Nelson told MedPage Today in an interview. “We’re just not equipped to [deal] with that on a day-to-day basis.”
Nelson said that barriers to accessing mental healthcare, such as time and cost, can be removed by programs that are free, confidential, and focused on providing support and skill development.
Gold said that by offering free mental health support to frontliners during the crisis, Project Parachute intervenes at a time when long-term mental health impacts can be prevented.
“We often don’t know what we need when we need it,” Gold said. “If it’s offered, they’re more likely to take it. If they start now they’re more likely to continue.”
Our Nurse of the Week is Deborah Kaplan, the director of nursing and health services for Raleigh County Schools. Kaplan was recognized by the Highmark Foundation for “Advancing Excellence in School Nursing.” The foundation awarded Kaplan the School Nursing Practice and Leadership award in honor of her demonstration of leadership in school health and qualities of care and compassion.
Kaplan has more than 35 years of nursing experience. She started her career as a floor nurse at an area hospital and has served in a number of capacities in the hospital setting, including outpatient surgery and quality improvement nurse management. She heard about school nursing from a colleague and grew interested in pursuing a job as a school nurse before finally joining the Raleigh County School system when a job became available in 1997.
As health care challenges have grown over the decades, so has the need for more nurses, especially in schools. Over the course of her career, Kaplan has advocated for more nurses in the school, and the board office supported the effort. There are now 14 school nurses throughout the county, and most nurses oversee two schools each. Kaplan has also provided “Stop the Bleed” training for school nurses and staff in case of an active shooter and applied for grants to get emergency medical supplies in each school in the county.
The Highmark Foundation is a nonprofit organization dedicated to improving the health, well-being, and quality of life for individuals and communities throughout the areas served by Highmark Inc. To learn more about Raleigh County Schools Director Deborah Kaplan who was recognized by the Highmark Foundation for excellence in nursing, visit here.
Before meeting with legislators, the nurses and students
gathered for an advocacy-themed continuing education program to hear Dr. Ernest
Grant, president of the American Nurses Association, deliver the keynote
address, which included notes about why the SAVE Act is crucial for North
Carolina nurses and patients.
In fact, Adcock
introduced one of the pieces of healthcare legislature that the nurses rallied
for. The bill would ensure every school in North Carolina will have at least
one nurse, as schools currently are experiencing their own nursing shortages.
Besides advocating for nurses and patients across the state,
the North Carolina Nurses Association (NCNA) provides resources to advance
nursing practice and education. The NCNA hosts the Nurses Day at the Legislature
every other year.