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Jimmy Carter has had many accomplishments, but nearly eradicating Guinea worm may be his greatest

It was a problem no one would touch.

via Wikimedia Commons

Jimmy Carter at the Commonwealth Club in San Francisco, California

In 2015, former president Jimmy Carter held a press conference where he laid out a goal for the rest of his time on Earth. "I would like to see Guinea worm completely eradicated before I die," Carter said. "I'd like for the last Guinea worm to die before I do. I think right now, we have 11 cases. We started out with 3.6 million cases."

Now that Carter, 98, is in hospice, spending his final days at home with his family, he probably won’t achieve his goal. But his herculean efforts at abolishing the deadly worm will be ranked among his most significant achievements as a politician and humanitarian over his extraordinary life.

When the Carter Center took the lead on an international campaign to eradicate the Guinea worm in 1986, there were 3.5 million cases in 21 countries across Africa and Asia. In 2022, only 13 cases were reported worldwide, a 99.99% decrease. If the Guinea worm disease is completely eradicated, it would only be the second eradicated human disease in history, following smallpox.

Carter and his wife celebrated a record low in cases last year.

“Rosalynn and I are pleased with this continued advance toward eradicating Guinea worm disease,” President Carter said. “Our partners, especially those in the affected villages, work with us daily to rid the world of this scourge. We are heartened that eradication can be achieved soon.”

After Carter left the White House in 1981, he went on a mission to fight “neglected” diseases in far-off places that most Americans would never have to worry about. He set his sights on conditions such as lymphatic filariasis, trachoma, river blindness, and schistosomiasis.

His former drug czar Peter Borne brought Guinea worm to his attention. Borne approached the Carter Center because no one else would touch the problem.

Guinea worm is also known as dracunculiasis which means “affliction with little dragons” in Latin. About a year after infection, the worms grow to three feet long, and the females prepare to give birth by making their way to a place right below the skin, causing painful blisters.

Eventually, the blisters burst and the mother burrows her way out, causing incredible pain.

To ease the pain, people often submerge the affected area in water, causing tens of thousands of baby worms to release in the water, where they will eventually find a host. Guinea worm can also cause fever, swelling and secondary infections like sepsis. Guinea worm causes significant hardships for families by rendering people unable to work or attend school.

“It’s an audacious and mind-boggling idea,” said Emily Staub, press liaison to health programs for the Carter Center, according to CNN. “I’m not just talking about just him. I’m talking about a whole bunch of people with the Carter Center that decided that they were going to eradicate a disease that has no vaccine, no immunity, no medication. It’s thousands of years old and has a one-year incubation. The odds are totally stacked against you. And the people that suffer from it speak thousands of different languages, and some have never had outsiders interact with them.”

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Jimmy Carter at the Commonwealth Club in San Francisco, California

via Wikimedia Commons

But Carter persisted, creating countless partnerships with leaders around the globe to educate people about the worm, provide tools for clean water and prevent its spread in the animal population. "Guinea worm disease has no cure, no vaccination, basically the entire eradication effort is built on behavior change,” Kelly Callahan, a public health worker who partnered with the Carter Center, told NPR.

Thirty-seven years after the Carter Center started on the audacious task of eradicating Guinea worm, the WHO has certified that 200 countries are free of the disease, meaning they've had zero instances of transmission in three years. Only six countries have yet to be certified as disease-free.

Jimmy Carter set a nearly impossible task, but with dogged persistence and the ability to make partnerships with people worldwide, many of whom have had little contact with the outside, he has helped save millions upon millions of people from incredible suffering.

In the coming days, people will celebrate many of Carter’s accomplishments. Let’s be sure that no one forgets to mention a success he’d rank among his proudest.

“We were traveling in a big motorcade,” he said in 2017. “We were driving along, and elementary school children had a big sign that says, ‘Watch out, Guinea worm. Here comes Jimmy Carter.’ That was almost as good as a Nobel Prize for me.”

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4 moms rejoiced when the Obamacare repeal bill failed. Now it's back, and they're furious.

Angela Eilers wanted to believe the push to upend the Affordable Care Act was finally over.

While "skinny repeal," the GOP's last attempt to gut the law, failed in July, she sent a handwritten thank-you note to every senator that voted against it. She saved the most elaborate and effusive for John McCain, Susan Collins, and Lisa Murkowski, the senators who broke with their own caucus to vote the bill down. Eilers was relieved for her daughter Myka, who was born with pulmonary stenosis, a congenital heart defect that required open-heart surgery to treat, and for her family, which she says can afford private market insurance thanks to the law.  

Still, she couldn't relax.

"I never let myself think that they weren’t going to stop," Eilers says. "I knew that they wouldn't stop until they got this done."

Her fears have come true with the most recent GOP push to replace the ACA. Eilers finds herself feeling disheartened and, perhaps most ominously, "defeated."

"Yesterday was the first day that it hit me really really hard," she admits.

With Senate Republicans taking another shot at Obamacare, many parents of children with chronic medical conditions are at their wits' end, trying to cope with having to fight, once again, to preserve their access to treatment.

What began as resolve has, for many, evolved into a growing sense of powerlessness — and anger.

"If these people lived on a pediatric cancer floor for weeks, months, or longer, they would reconsider their positions on health care because it is gut-wrenching," says Karen Lee Orosco, whose daughter was diagnosed with embryonal rhabdomyosarcoma, a rare form of childhood cancer, when she was 15 months old. Even with an intact ACA, Orosco had to crowdfund her daughter's surgery and is incensed that the new bill penalizes her home state of California with deep funding cuts.

Kate Greene, whose son Eddie suffers from severe hemophilia A, worries about returning to a time when those with the disease had to change jobs and move across state lines to afford, or even receive, coverage. Despite having visited her member of Congress with her family, she now makes 10 calls to them a day.

"I want Eddie to know I did everything I could to protect him," she says.

The most recent proposal, dubbed "Graham-Cassidy," includes drastic cuts to both Medicaid and the ACA's subsidies.

An NPR analysis found that the bill would allow states to permit insurers to omit the Affordable Care Act's essential health benefits from plans and deny or significantly upcharge consumers with pre-existing conditions.

The potential new law could also permit plans to bring back lifetime caps on coverage, a major fear for parents whose children have already exceeded them.

Frustration at the proposed cuts extends beyond the parents of young children.

Pat Nelson, whose 33-year-old son suffers from an aggressive form of brain cancer, says that calling her senator, Marco Rubio, which she does daily, feels like "hitting my head against a brick." She and her retired husband help her son cover his already sky-high medical bills, which she worries will explode if the bill becomes law.

"We would have to come up with more to pay for his healthcare," she says.  I'm not sure how we will be able to do that.

The fate of the bill continues to hang by a thread, as the key swing votes from July have yet to commit one way or another.

While Collins is seen to be leaning against the measure, neither McCain nor Murkowski have given more than a few clues about their vote.

On Sep. 20, a spokesperson for Mitch McConnell's office announced the majority leader's intent to hold a vote soon, leading some observers to believe the holdouts could be convinced to support the new proposal.

Until then, many say they have no choice but to keep fighting for their kids, exhausted as they may be.

Despite her despair over the bill's return, Eilers was buoyed when Jimmy Kimmel, a fellow "heart dad," used his opening monologue to rail against the bill Tuesday and accused bill co-author Louisiana Senator Bill Cassidy of lying "right to his face."

"He was angry, like us, like the rest of us," she says. "He was angry that this could impact his child. And I appreciated that."

Next week could bring relief or more fury.

In the meantime, Eilers plans to keep sending her representative a picture of Myka every day until the bill is either dead or law.

After all, she wonders, what else is there to do?

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This summer camp might seem like any other, until you meet its campers.

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Whether it’s chasing frogs, scaling the climbing wall, or arts and crafts, everything about the Albert and Ann Deshur JCC Rainbow Day Camp seems typical — until you learn about the campers.

Summer camp is considered a rite of passage for many children, but we often forget that it can be inaccessible to kids who are sick or living with a disability.

Designed for children with medical conditions that require special attention, like cancer or sickle-cell disease, the Milwaukee, Wisconsin, camp keeps nurses and doctors on staff so the kids truly have the best chance at "getting to be a kid for a day" for two days each year.

Counselor David, camper Alex. Photo by Josh T. Decker.

Siblings, who can sometimes be overlooked when their brother or sister needs more attention or care, are also invited.

They get the chance to totally let loose, an opportunity they don't always have when medical bills are high and private camp isn't always an option.

Only child? No problem — they can bring along a BFF.

"We’re used to dealing with a spectrum of needs for each kid," says Rainbow Day Camp director Lenny Kass.

Taking each kid’s unique challenges into account, the camp is committed to creating an experience that allows any kid in attendance to participate, no matter their limitations.

Scooter campers: Melvin, Adam and Memphis. Photo by Josh T. Decker.

But can a single camp experience really impact the kids, or is it just fun and games?

While an illness like cancer can really crush a child’s spirit, making connections at camp and embracing new experiences helps many of the kids walk away feeling lighter.

"There was a child in the clinic [who didn’t] speak much," Kass remembered. "He would hardly talk at all. Here at camp ... [we] literally could not keep him quiet."

Pool campers: Melvin and friend. Photo by Josh T. Decker.

There are many stories just like that, of kids who left Rainbow Day Camp with an outlook very different from where they began. And that's the magic of a camp like this — these kids are more than their illnesses, and creating a space for them to be themselves can do wonders.

Dr. David Margolis, a regular fixture at the camp, noted that it’s not just the kids who experience these transformations either. "This is soul food for the staff," he said.

"Some have gone on to become medical students and residents here."

Camper Athena (this was her last day of treatment!) and Dr. Stephanie. Photo by Josh T. Decker.

Parents, too, find joy in seeing their kids come out of their shells, living as children instead of as "patients."

As passionate as he is about supporting kids with diseases, Kass and his team are still invested in a future where a place like Rainbow Day Camp won’t be needed.

"We’d never have to have a camp because there’d be no kids with cancer," he said. "I hope it will be in my lifetime."

For now, he's content with "making even one child’s day phenomenal."

Making a difference in someone’s life can be as simple as that.

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This man's moving story shows why caring for others must start with self-care.

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"Caregiving is nothing but confusion when you first start out."

70-year-old Frank Blood, who has been caregiving for his wife, Mary Ann, for almost two decades, adds, "It took me years and years to learn this stuff."

"The biggest challenge was knowing what was important and what wasn't."

Image via Frank Blood, used with permission.

Mary Ann has lived through cancer twice. Most recently, she was diagnosed with chronic obstructive pulmonary disease, a lung condition that makes it difficult for her to breathe, as well as vascular dementia, which involves memory loss due to multiple strokes.

The couple has been married for 41 years, and Frank says caregiving for Mary Ann has brought them closer than ever before. He points to one night in particular 10 years ago.

"She had chest pains," he recalls. "We were driving to the hospital and I looked over at her and said, 'You know something? This time I'm scared.' And she said, 'Me too.'"

"I didn't think of it again for about a week probably, but I thought, 'Wow. I've never opened up like that. I've never said anything like that.' And since then, we start telling each other what's in the deepest part of our hearts. ... There was another level to go to."

Image via iStock.

Mary Ann isn't able to move on her own, so she relies on Frank to get her ready for the day, take her from room to room, feed her, and make sure she's  comfortable.

Frank also takes all of Mary Ann's vital signs regularly and even keeps a journal with her daily medical history.

In his nearly 20 years of caregiving, Frank has discovered one thing that may seem counterintuitive: Taking care of himself actually helps him give Mary Ann the best possible care.

"When we take care of ourselves," Frank explains, "Everything else about caregiving becomes much more joyful."

As a caregiver, preventively caring for your own health can help head off problems down the road.

Image via iStock.

Now, Frank is doing all he can to spread this positive message — and his learnings — to other caregivers who may be feeling just as lost as he once was.

To do this, he left his job as a sales rep for a construction company and started Caregiver Harbor. "I offer free phone support," explains Frank. "A caregiver can call me up and talk about anything they want." On top of that, he also writes helpful online articles and conducts talks at local libraries and senior centers.

Here are seven of the most valuable things Frank's learned throughout the years about caring for yourself as a full-time caregiver:

1. Get your energy up and running.

Image via iStock.

"I get up really early," Frank says with chuckle. "Between 4:30 and 5:00."

From there, he takes his morning coffee, goes on a leisurely walk, and then hits the treadmill for some aerobic exercise.

2. Exercise the mind too.

"I have to have that quiet time in the morning before I start out," adds Frank.

After he's gotten through his workout, he'll throw in a 15-minute meditation session to get his mind calm and focused on the present.

3. Pay close attention to your nutrition. (You might forget.)

Image via iStock.

This is no doubt one of the hardest parts for Frank. "Since I have to cook and feed my wife," he explains, "either I'm gobbling down food before it gets cold or I don't eat. The challenge is the amount of time to prepare and eat and clean up."

In the past, he'd settle on quick bites, such as cookies and candy, to get by. But since he's prioritized nutrition, he now consumes fresh fruit juices and lots of veggies.

4. Never try to do it alone.

"I don't hesitate to ask for help," says Frank. "If somebody volunteers to help me, I never turn it down."

In particular, don't be afraid to ask for help from your doctor. They're there to help you with your health better than anyone. And a good place to start is by getting to know your four health numbers — blood pressure, cholesterol, blood sugar, and body mass index (BMI).

5. Manage your time to a T.

Image via iStock.

"You just cannot let things happen without some kind of a plan," adds Frank.

Each hour of every day is dedicated to a specific activity — from his morning routine, to taking Mary Ann's vitals, to catching up on some TV with her at the end of the day.

6. Don't feel guilty for taking a little me-time.

In the beginning, "I felt very guilty about not spending all my time with my wife," Frank explains. This is common for caregivers.

Frank explains that it can take a while for a person to develop the confidence to break away once in a while. But as he got more familiar with the nuances of caregiving, he knew that being there for Mary Ann was about way more than physical presence.

7. It's OK to have your own life too.

Image via iStock.

Frank keeps his social life healthy by staying active with his church group; he's also part of the local chamber of commerce and will sometimes volunteer at community events to lend a helping hand.

"I'll sometimes tell my wife, 'No, this is my time. I need it,'" explains Frank. "And I have to walk away. That wasn't possible for a few years."

At the end of the day, giving others the best care possible requires a commitment to caring for yourself.

Not sure where to start? Take a step forward and visit a health care professional for your annual checkup and learn about your health numbers. Once you have a clear picture on how to better care for yourself, you'll be able to care for others.

And if you ever feel a little lost along the way, there are people out there like Frank who are always ready to listen and help in any way they can.

Image via Frank Blood, used with permission.

"I just want to let caregivers know that if I can do it, you can," adds Frank. "And you will be very happy if you just don't try so hard. Let things happen and take good care of yourself."

Learn more about how to take control of your health at Cigna.com/TakeControl.

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