Meet Brenda Hampton. She Wants to Restore Trust in Medicine

Heather Boerner

April 06, 2021

On any given day, you might find Brenda Hampton driving around rural Lawrence County in Alabama with her truck bed weighed down with pallets of bottled water. Sometimes that truck bed is filled with white plastic bags from the grocery store as she heads to a few senior-living neighborhoods to make sure they have clean water and enough food.

It's just like Hampton to keep tabs on individuals, on neighborhoods, and on issues. On this day, Hampton is worried about the manager at the Dollar General. She hasn't seen the manager in a few days and she's wondering if she's okay.

Since the FoodValu grocery store shut down in March 2020, the overstuffed aisles of the Dollar General have become the only place to buy groceries for about 20 miles. They're doing their best to provide a grocery store within the dollar store, Hampton said, but that means that most people in town visit the store at least once a week.

"We gave her a COVID test last Saturday; oh yes, we went in the store and we tested her," said Hampton. "So far, when I came back in town, she hasn't been at work and I don't have her home number. I want to find out if she was positive and if that's why she wasn't back in the store."

So when COVID-19 arrived in this low-lying county with 50-foot pines, it didn't surprise folks around here that Hampton added it to her list of things to keep tabs on. Since she recovered from her own bout with COVID-19 in the fall, she has run five COVID-19 testing events in rural Lawrence County and talked up testing and vaccination for a lot longer than that. As the Biden Administration announces new funding for community health workers in the COVID-19 response, it's clear to Ashish Jha, MD, dean of the Brown University School of Public Health in Providence, Rhode Island, that people like Hampton will be essential if testing and vaccination efforts are going to be successful.

"In every community, there are different voices, different people who have resonance, who are trusted," said Jha, who pointed out that although some leaders are coming from healthcare, others are religious leaders or civil society organizers. "And working with them has got to be a much more aggressive and proactive effort than it's been so far."

Essential Work

Brenda Hampton at home with her mother in Courtland, Alabama

Courtland, Alabama is home to about 800 people, situated just off the sun-baked rural route between Huntsville and Muscle Shoals. Here, Jessie Jackson Parkway connects Jefferson Street in Courtland proper or Davis Street in predominantly Black North Courtland.

People here in Lawrence County work in plants along the Tennessee River and elsewhere — for 3M, Lockheed Martin Space Systems, International Paper — or at the local school district. Although a community known for hard work, almost one in five, or 18%, lived in poverty in 2019, according to the US Census. And that's just overall. Residents of primarily Black areas like North Courtland have a poverty rate of 37%. The average age is 42 years, older than the average for the state. Locally, Courtland is known as a retirement community.

Broadband internet is scarce here; only 62.0% of residents had access to it in 2019, according to the US Census. And just three-quarters of residents own a computer. By comparison, 40 minutes away in Huntsville, 92.5% of residents own one. And healthcare is accessible, if you want to travel the 25 minutes down to Moulton, where the county's health department and the nearest hospital — with 98 beds — are located.

It's a town where people still spread their news at church or on Facebook groups managed on cell phones.

This is where Hampton played in the streets with her cousin Aletha as a child and insisted on being served at the White-only front of a local restaurant at age 15. It's also where Hampton returned, after attending university and becoming a paralegal in Boston, to care for her mother, who was dying of end-stage kidney disease. In 1997, Hampton gave her mother her left kidney.

It was after she returned to Courtland that Hampton noticed that it wasn't just her mother with kidney disease. A lot of people around there had it, and rare cancers, too.

Kidney Disease and Rare Cancers

Kidney disease is the number seven killer of the state's Black residents, according to data from the Centers from Disease Control and Prevention; for White residents, it is the number 10 killer. Having trained as a paralegal and worked with attorneys on criminal cases in Boston, Hampton was used to digging for information. She spent hours at a time in Boston's jails, talking to people accused of crimes, getting to know them and their friends, and visiting the neighborhoods where clients lived.

"This is the thing about being an investigator and a paralegal," she said. "If the person told me they were hanging out with friends or they weren't there, I would go out and knock on the door. I go in the neighborhood and I would run that person down to make sure that they were there with them, to get the story."

When she saw the high rates of thyroid disease, kidney problems, liver disease, and cancer in her community, Hampton used those same skills. She started ferrying water samples 3.5 hours away to Auburn University, where researchers tested the water for chemicals. What those lab tests showed was high rates of chemicals known as perfluoroalkyl and polyfluoroalkyl (PFAS) substances, which are associated with thyroid disease, kidney problems, and cancers.

Hampton then got involved in surveying local residents about health history to document the problem.

She brought the findings back to the community and got a surprising response. "Nah, nah, this can't happen now," she said people told her. "This is not Tuskegee all over again."

It was in Tuskegee, Alabama that an unethical scientific experiment of syphilis was conducted on Black men, which resulted in a $10 million out-of-court settlement back in 1974.

And then young people started dying in Hampton's community. She said she remembers sitting at a table with a White member of her coalition when the woman had a ruptured liver right in front of her. Then there was another man whose eulogy she gave; he'd had a heart as big as a fist, which made it hard for him to breathe when sitting up. "He wanted people to know that it was the chemicals that got him," she said.

"He went in the hole — he worked for BP Amoco — and there was a chemical spill. They sent 14 guys down there. Three of the 14 came out with cancer," Hampton said.

But this work didn't make her popular with many of her neighbors, whose livelihoods depended on the 3M plant downriver in Decatur, Alabama. Hampton found supporters in members of the international PFAS Contamination Coalition and local environmental activists. And she founded and mostly runs two groups on Facebook: Concerned Citizens of North Alabama; and Concerned Citizens of the West Morgan-East Lawrence Water Authority Grassroots. Concerned Citizens of WMEL has more than 3400 members.

And she kept bringing the matter up to local public officials, the governor, and the Environmental Protection Agency. She also started talking to local newspaper and television reporters, resulting in a flurry of news reports from 2015 to 2021.

In 2019, the water authority and 3M settled their lawsuit, with 3M agreeing to pay $28.5 million for a reverse osmosis system to clean the water.

$28.5 Million Settlement

That system isn't operational yet and the effects of the water crisis aren't over. The water authority hands out free bottled water to community members, but there isn't enough to go around, so Hampton and members of her group pick up the slack.

Hampton's mother died in 2001. A few years after donating an organ to her mother, Hampton developed acute kidney failure herself and now receives dialysis for her one remaining kidney.

It's a common refrain in the community that people won't trust the water or authorities for a long time to come. "We feel that we've been test subjects," Hampton said.

Some of the children in the county grew up rolling little beads of silver that could have been mercury around in their hands. There was a sense in the community that the people had been betrayed as chemicals flowed into their water, soil, and air.

So when the pandemic hit in the summer of 2020, many people in Lawrence County were already struggling. And it raised Hampton’s radar, too. So many of the people she knows have pre-existing conditions, which are associated with worse COVID-19 outcomes. "They are at risk," she remembers thinking.

At first the COVID-19 cases were rare; one person here, another there. Confirmed cases didn't get above four a day until mid-June. But then it started getting worse.

Bishop Thomas Davis Jr, head of Wheeler Chapel Church in Courtland, lost one of his "spiritual fathers in ministry" to COVID in those first months of the pandemic. And over the past year, five of the deacons in his church got COVID, as did several members of the congregation. In November, his parents, both 91 years of age, were in the hospital for 3 weeks with the virus. "By the grace of God, they made it out," he said.

COVID-19 Hits Home

Hampton saw three of her cousins — all restaurant workers — get sick. By July, her uncle had died of COVID. And then, 3 days after that funeral, Hampton got the virus.

COVID-19 affected her muscles to the point she could barely walk. Friends dropped meals off on her front step. Two nurse friends came to care for her and give her an inhaler and nebulizer, with the hope of keeping her out of local hospitals, all of which were full at the time. It took her a month to recover.

And all along, her phone was ringing with news of another death. "Sometimes I really hate to answer my phone early in the morning," she said. "There are a lot of deaths and a lot of people calling, wanting me to come by."

By early April last year, Pastor Greg Patrick of Blackburn Baptist Church in nearby Limestone County had a cold so bad that he couldn't breathe for 3 days. Not even his asthma inhalers helped. His wife had a rough cough as well. But Patrick still doesn't know if it was COVID because he never got tested.

In fact, testing rates in the county were low in the early days. Of 32,000 people, no more than 20 tests were conducted a day until mid-June, even as the test positivity rate hovered around 10%. Today, the cumulative test positivity rate is nearly 25%.

It's not that the communities weren't interested in testing necessarily, said Joe Crozier, who leads statewide COVID-19 response efforts for the North Alabama Area Health Education Center. The center is a national network of nonprofit organizations with a mission to improve the health of Alabama's vulnerable residents. There were just a lot of barriers in general to get them for anyone. When you add the remoteness of some of these communities, it meant that testing was thin on the ground.

Traveling to Get Tested

There are no testing sites in Courtland or North Courtland themselves, according to Bama Tracker. "People had to travel upwards of 50 miles or more to get tested" in some rural parts of the state, said Crozier. "The other thing is that most of the testing, at least when it started back in June and July of last year, was the deep pharyngeal sinus tests. It was painful. And a lot of times, you couldn't get tested unless you had symptoms."

In addition, tests sometimes required a referral from a physician and a health insurance card or a state ID, which not everyone has, he said.

So when the Alabama Department of Public Health contacted the Alabama Area Health Education Center to see if the group could help expand testing, particularly to rural Black and Hispanic communities in the state, Crozier was tapped to help lead part of the effort. It took a coalition that included James "Rick" Kilgore, PhD, assistant professor of medicine at the University of Alabama at Birmingham, and the Civil Air Patrol to get testing to each of Alabama's rural counties.

In June, 3 months into the pandemic, they started testing in rural parts of the state, but it wouldn’t be until December that those tests came to Lawrence County. "We were doing mass events, mostly in parking lots, at churches," Kilgore told Medscape Medical News. "There wasn't a lot of hesitancy to get tested."

To get testing to rural parts of the state, the Alabama coalition tackled the access problem by putting together what they called taskforces in each county, which consisted of business, community, and government leaders. If there was an outbreak, the taskforces could establish a place and time for a free, no-symptoms-required, no-ID-or-insurance-necessary testing event.

As Hampton began recovering from COVID in September, her worry for her community grew. So when it came time to build a taskforce for Lawrence County, the obvious choice was Brenda Hampton, said Lamont Dupree, interim associate director of the North Alabama Area Health Education Center. By that point, he'd been working with Hampton for a few years on health issues in that community. He'd even assembled a group of students from Alabama A&M University in Huntsville to gather water, food, and Christmas presents for people in Hampton's community.

To Dupree, Hampton "was a natural fit." She has a heart for this community, he said. "It takes individuals who know people and who people trust. It takes individuals being able to speak from the heart and who people know are sincere, and who have been there already. That's Brenda. She didn't just show up. She's been there and she's been caring about people's health. And now she says, 'Hey, this is what's going on."

This Is "Show Me Alabama"

At 6:30 in the morning in early February, Hampton appeared on Fox 54 with Bishop Davis. This was Davis's Encouragement Zone, a weekly 30-minute praise and community affairs show he hosts weekly on television and then shares on YouTube.

To Davis, who has known Hampton since they were in sixth grade together, Hampton has always been a leader. "What she believed, she stood for," Davis said. "She was not afraid to speak on issues, things that other people probably would have let go. That's coming forth now at an even greater and greater rate."

On that winter day, Hampton explained the latest on the local COVID-19 epidemic: the Dollar General was going to start propping open its front door to get a little more air circulation into the narrow aisles; people 20 to 49 year of age had the highest rates of COVID because they weren't wearing masks at all; she'd be hosting another testing event later that month in Courtland and wanted everyone to come out; and people really needed to get tested so they could quarantine if they were infected.

"I had COVID so I know what I'm talking about. It is real. It is alive," she said. Six feet away, Davis sat in his own mask nodding. He made his own pitch for testing and quarantining, sharing his bout with asymptomatic COVID.

"I quarantined for 14 or 15 days; I got someone else to minister for me," he said. "The fact is, if I did not take that test, I would never have known and I would have passed it on to God knows how many people, because I didn't have symptoms at all."

Since she got involved in the COVID testing campaign, the coalition has held five testing events in a number of parking lots, including at the abandoned FoodValu and at Eva's Consignment Shop in nearby Hillsboro.

And all along, she's been teaching. She led an event at the local recreation center after she heard some young people argue that they didn't need to wear masks because they heard a rumor the melanin in their skin could protect them from COVID. This was an inaccurate extrapolation of early data that showed that people in Africa weren't acquiring COVID, even as European and Asian nations saw their COVID rates surge.

Videos were circulating online saying that COVID had been developed in a lab and could be treated, but clinicians were withholding medicine. "There was a lot of distrust and apprehension because of where the information was coming from," said Crozier. "There was a feeling that we weren't going to get hit by COVID; that we were safe, or that it wasn't real, that it was a hoax. You're fighting a lot of misinformation."

For Hampton, this kind of education was par for the course. "Alabama has a saying: You've got to show me," she said with a chuckle. "This is show-me Alabama. So we had to show them."

That meant that Hampton had to show how many more Black people were dying of COVID-19 than White people. Testing was just practical, she said. "We need to have some testing done in the community because it's affecting the community," she said. "The way I got them to take the test was to bring it to the church, to get the ministers to bring it up from the pulpit, so people started showing up for the test."

In the past year, 9,560 COVID tests have been administered to Lawrence County's 32,000 residents, according to Bama Tracker. And since they started testing, the coalition has administered 4,700 tests at 89 events in rural parts of the state, just like they were doing in Lawrence County, Crozier said. More than 100 of those are in Lawrence County.

Today, the county's 14-day test positivity hovers around 4%, according to Bama Tracker.

Now that vaccines are rolling out, Hampton continues to beat the drum for testing, posting her testing events on her Facebook groups, with the refrain, "Always Fighting for My Family and Yours."

But those events aren't attracting as many people now that vaccines are available, Crozier said. He remembers when, at the end of 2020, 75 to 150 people would show up to testing events. In early March, a Lawrence County event drew fewer than 10 people, said Dupree.

"I'm an optimist," Dupree said. "For those people, it was important." But that doesn't mean the need for testing has dropped, said Crozier. So the statewide coalition has put together a vaccine playbook that starts with holding testing events at a church or in a parking lot. The playbook tells community groups how the coalition can help them set up a vaccination site in their rural area.

Rural Vaccination Sites

In the meantime, testing is still an option. It only takes one person getting COVID in a rural community to cause an outbreak, Crozier pointed out.

They are also encouraging testing by suggesting that churches or businesses hold testing events at their sites as assurance that they can meet in person again, said Kilgore.

Hampton received her first dose of the Moderna vaccine in mid-March and felt lousy for 3 days before she could get going again. But she's back out there now, delivering water and food and talking up testing and vaccination. Soon, she and Dupree will go to the senior apartment buildings she’s adopted and, when she drops off food and water, talk to them about vaccination and even schedule appointments for them, if they’re ready.

Sometimes, she said, people can't believe that she's an acute renal patient, the way she keeps going. But really, she does it because of her faith.

"God knows I have a big mouth," she said with a laugh. "And so He uses it." When her kidney started failing, she went through 18 months of serious illness. Back then, she explained, she promised, "If you help me, Lord, I will help everybody that I can"

It's all God. "I'm just along for the ride. I tell Him, 'as long as You use me, I'm going to keep doing this work'," she said.

Heather Boerner is a science and medical reporter based in Pittsburgh, PA. Her book, Positively Negative: Love, Sex, and Science's Surprising Victory Over HIV, came out in 2014. Follow her on Twitter at @HeatherBoerner.

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