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Tag: early diagnosis

  • The COVID Emergency Is Ending. Is Vaccine Outreach Over Too?

    The COVID Emergency Is Ending. Is Vaccine Outreach Over Too?

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    Stephen B. Thomas, the director of the Center for Health Equity at the University of Maryland, considers himself an eternal optimist. When he reflects on the devastating pandemic that has been raging for the past three years, he chooses to focus less on what the world has lost and more on what it has gained: potent antiviral drugs, powerful vaccines, and, most important, unprecedented collaborations among clinicians, academics, and community leaders that helped get those lifesaving resources to many of the people who needed them most. But when Thomas, whose efforts during the pandemic helped transform more than 1,000 Black barbershops and salons into COVID-vaccine clinics, looks ahead to the next few months, he worries that momentum will start to fizzle out—or, even worse, that it will go into reverse.

    This week, the Biden administration announced that it would allow the public-health-emergency declaration over COVID-19 to expire in May—a transition that’s expected to put shots, treatments, tests, and other types of care more out of reach of millions of Americans, especially those who are uninsured. The move has been a long time coming, but for community leaders such as Thomas, whose vaccine-outreach project, Shots at the Shop, has depended on emergency funds and White House support, the transition could mean the imperilment of a local infrastructure that he and his colleagues have been building for years. It shouldn’t have been inevitable, he told me, that community vaccination efforts would end up on the chopping block. “A silver lining of the pandemic was the realization that hyperlocal strategies work,” he said. “Now we’re seeing the erosion of that.”

    I called Thomas this week to discuss how the emergency declaration allowed his team to mobilize resources for outreach efforts—and what may happen in the coming months as the nation attempts to pivot back to normalcy.

    Our conversation has been edited for clarity and length.

    Katherine J. Wu: Tell me about the genesis of Shots at the Shop.

    Stephen B. Thomas: We started our work with barbershops and beauty salons in 2014. It’s called HAIR: Health Advocates In-Reach and Research. Our focus was on colorectal-cancer screening. We brought medical professionals—gastroenterologists and others—into the shop, recognizing that Black people in particular were dying from colon cancer at rates that were just unacceptable but were potentially preventable with early diagnosis and appropriate screening.

    Now, if I can talk to you about colonoscopy, I could probably talk to you about anything. In 2019, we held a national health conference for barbers and stylists. They all came from around the country to talk about different areas of health and chronic disease: prostate cancer, breast cancer, others. We brought them all together to talk about how we can address health disparities and get more agency and visibility to this new frontline workforce.

    When the pandemic hit, all the plans that came out of the national conference were on hold. But we continued our efforts in the barbershops. We started a Zoom town hall. And we started seeing misinformation and disinformation about the pandemic being disseminated in our shops, and there were no countermeasures.

    We got picked up on the national media, and then we got the endorsement of the White House. And that’s when we launched Shots at the Shop. We had 1,000 shops signed up in I’d say less than 90 days.

    Wu: Why do you think Shots at the Shop was so successful? What was the network doing differently from other vaccine-outreach efforts that spoke directly to Black and brown communities?

    Thomas: If you came to any of our clinics, it didn’t feel like you were coming into a clinic or a hospital. It felt like you were coming to a family reunion. We had a DJ spinning music. We had catered food. We had a festive environment. Some people showed up hesitant, and some of them left hesitant but fascinated. We didn’t have to change their worldview. But we treated them with dignity and respect. We weren’t telling them they’re stupid and don’t understand science.

    And the model worked. It worked so well that even the health professionals were extremely pleased, because now all they had to do was show up with the vaccine, and the arms were ready for needles.

    The barbers and stylists saw themselves as doing health-related things anyway. They had always seen themselves as doing more than just cutting hair. No self-respecting Black barber is going to say, “We’ll get you in and out in 10 minutes.” It doesn’t matter how much hair you have: You’re gonna be in there for half a day.

    Wu: How big of a difference do you think your network’s outreach efforts made in narrowing the racial gaps in COVID vaccination?

    Thomas: Attribution is always difficult, and success has many mothers. So I will say this to you: I have no doubt that we made a huge difference. With a disease like COVID, you can’t afford to have any pocket unprotected, and we were vaccinating people who would otherwise have never been vaccinated. We were dealing with people at the “hell no” wall.

    We were also vaccinating people who were homeless. They were treated with dignity and respect. At some of our shops, we did a coat drive and a shoe drive. And we had dentists providing us with oral-health supplies: toothbrush, floss, paste, and other things. It made a huge difference. When you meet people where they are, you’ve got to meet all their needs.

    Wu: How big of a difference did the emergency declaration, and the freeing-up of resources, tools, and funds, make for your team’s outreach efforts?

    Thomas: Even with all the work I’ve been doing in the barber shop since 2014, the pandemic got us our first grant from the state. Money flowed. We had resources to go beyond the typical mechanisms. I was able to secure thousands of KN95 masks and distribute them to shops. Same thing with rapid tests. We even sent them Corsi-Rosenthal boxes, a DIY filtration system to clean up indoor air.

    Without the emergency declaration, we would still be in the desert screaming for help. The emergency declaration made it possible to get resources through nontraditional channels, and we were doing things that the other systems—the hospital system, the local health department—couldn’t do. We extended their reach to populations that have historically been underserved and distrustful.

    Wu: The public-health-emergency declaration hasn’t yet expired. What signs of trouble are you seeing right now?

    Thomas: The bridge between the barbershops and the clinical side has been shut down in almost all places, including here in Maryland. I go to the shop and they say to me, “Dr. T, when are we going to have the boosters here?” Then I call my clinical partners, who deliver the shots. Some won’t even answer my phone calls. And when they do, they say, “Oh, we don’t do pop-ups anymore. We don’t do community-outreach clinics anymore, because the grant money’s gone. The staff we hired during the pandemic, they use the pandemic funding—they’re gone.” But people are here; they want the booster. And my clinical partners say, “Send them down to a pharmacy.” Nobody wants to go to a pharmacy.

    You can’t see me, so you can’t see the smoke still coming out of my ears. But it hurts. We got them to trust. If you abandon the community now, it will simply reinforce the idea that they don’t matter.

    Wu: What is the response to this from the communities you’re talking to?

    Thomas: It’s “I told you so, they didn’t care about us. I told you, they would leave us with all these other underlying conditions.” You know, it shouldn’t take a pandemic to build trust. But if we lose it now, it will be very, very difficult to build back.

    We built a bridge. It worked. Why would you dismantle it? Because that’s exactly what’s happening right now. The very infrastructure we created to close the racial gaps in vaccine acceptance is being dismantled. It’s totally unacceptable.

    Wu: The emergency declaration was always going to end at some point. Did it have to play out like this?

    Thomas: I don’t think so. If you talk to the hospital administrators, they’ll tell you the emergency declaration and the money allowed them to add outreach. And when the money went away, they went back to business as usual. Even though the outreach proved you could actually do a better job. And the misinformation and the disinformation campaign hasn’t stopped. Why would you go back to what doesn’t work?

    Wu: What is your team planning for the short and long term, with limited resources?

    Thomas: As long as Shots at the Shop can connect clinical partners to access vaccines, we will definitely keep that going.

    Nobody wants to go back to normal. So many of our barbers and stylists feel like they’re on their own. I’m doing my best to supply them with KN95 masks and rapid tests. We have kept the conversation going on our every-other-week Zoom town hall. We just launched a podcast. We put out some of our stories in the form of a graphic novel, The Barbershop Storybook. And we’re trying to launch a national association for barbers and stylists, called Barbers and Stylists United for Health.

    The pandemic resulted in a mobilization of innovation, a recognition of the intelligence at the community level, the recognition that you need to culturally tailor your strategy. We need to keep those relationships intact. Because this is not the last time we’re going to see a pandemic even in our lifetime. I’m doing my best to knock on doors to continue to put our proposals out there. Hopefully, people will realize that reaching Black and Hispanic communities is worth sustaining.

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    Katherine J. Wu

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  • Early Diagnosis and Why It Matters

    Early Diagnosis and Why It Matters

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    From the minute we wake up until we go to sleep, our eyes help us navigate the world. Like a finely tuned camera, each part of our eyes has a very specific job to do.

    What Is Inherited Retinal Dystrophy (IRD)

    Our dome-shaped cornea, the front layer of the eye, allows light to pass through and bends it to help us focus. Some light enters though the small opening of the pupil. How much light the pupil can let in is controlled by the iris, the colored part of the eye. That light then travels through the lens of the eye, which works together with the cornea to focus light on the retina. The retina, located at the back of our eye, is light sensitive. It contains special cells called photoreceptors that turn light into electrical signals that go to your brain and changes those signals into the images you see.

    Sometimes things can go wrong with one of the parts of our eyes. A rare group of disorders affecting the retina are called inherited retinal dystrophies (IRDs.) These groups of diseases are hereditary, meaning they are passed down through families. The cause is mutations, or malfunctions, in at least one gene that is not working properly. There are around 300 known to play a role in these diseases.

    Some IRDs may progress slowly, while another may change vision much more quickly. Some may lead to vision loss.

    Why Is Earlier Diagnosis of IRDs Helpful?

    “It’s important to understand these diseases are rare, relatively speaking. But for the people who have an IRD, it can be life-changing,” says Shree Kurup, MD, FACP, a retinal specialist at  University Hospitals Cleveland Medical Center. “But what’s important to know is that early diagnosis of any one of these diseases can absolutely improve lives. We may not be able to cure every IRD, but we are making significant progress in learning more about the several hundred genes that can cause them.”

    There are more than 260 genes that can cause IRDs. But getting a diagnosis is more involved than a routine eye exam. “There can be a lot of reasons for blurry vision, and an IRD is not going to be the first thought of any eye doctor,” says Matthew MacCumber, MD, PhD, a retinal specialist at Rush University Medical Center. There is a great amount of variety among all IRDs, so it can be tough to make an accurate diagnosis. “Sometimes patients may be misdiagnosed for years and when they finally get a firm, accurate diagnosis it’s almost a relief because they can finally put a name to their problem,” MacCumber says.

    To make a diagnosis, doctors rely on a battery of specialized tests that give them information on many aspects of your vision. A genetic test will tell you exactly what genetic mutation you have and can help your doctor confirm your diagnosis. It will also give you and your family important information about your disease, how you may need to plan for your own future, and how it may affect other family members and future generations.

    “It’s important to spend a lot of time with people to explain how an IRD may change their lives,” MacCumber says. “An early diagnosis also gives patients access early on to a team of experts that can help them.” That team is made up of ophthalmologists, optometrists, retinal specialists, genetic counselors, and other experts in low vision.

    Early Diagnosis and Clinical Trials

    An early and accurate diagnosis also can help you enroll in a clinical trial. This will give you the chance to try new therapies before they’re available to the general public. Although almost no IRDs have treatments right now, doctors are hopeful about the future of gene therapies. In clinical trials of one such therapy, patients reported that they were able to get rid of some devices designed to help those with vision loss see faces and read.

    “Gene therapy is the future of IRDs, and we’ve come a long way in genetic testing, We are learning more and more about these diseases. I absolutely, 100% recommend that patients participate in a clinical trial if they are eligible. This is the way we will find cures,” MacCumber says.

    The most important thing for the majority of people with IRDs right now is to not lose hope. “Imagine how hard it can be for a parent to hear their child may lose their sight or how hard it is for an active adult to hear they may have to change things in their life,” Kurup says. “IRDs are very complex, but each patient is an individual. For these people, knowledge really is power, and the earlier they get that power the better.”

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