Carl Romm was never completely well after he returned home from the Army. During his service, he injured his right index finger and it wouldn’t heal. After three months and several procedures to save it, his doctors performed a partial amputation, and he received a medical discharge.
At some point during his treatment, Carl picked up a staph infection. Typically, staphylococcus bacteria live on people's skin and don't cause major issues, but they can become dangerous if they reach a person's bloodstream or organs, which is what happened in Carl's case. Back home in Reno, Nevada, he wanted to go to University of Nevada for civil engineering, flip houses, get married, and have children. But he kept getting sick off and on. He had random coughs and bouts of the flu and bronchitis. He’d go to the doctor and get antibiotics for common infections and pain medication for his coughs, and he’d seem to get better, but not fully.
“It would almost go away, but whatever he had going on would never truly vanish,” says his father, Chris. “He was never truly healed.”
Carl’s condition began to decline on July 2, 2010, his parents’ anniversary. He had a fever and chills, so although he was tired of seeing doctors, Chris convinced him to go the ER. Chris dropped him off, and then he and his wife, Joyce, headed for a baseball game. Chris assumed the hospital would treat and release him, and then he’d join his parents at the game. Instead, Chris got a call from a doctor that Carl was very sick and the hospital was admitting him.
The doctors diagnosed him with a bacterial heart infection and began treating him with antibiotics. After a few days, he was doing well enough to go home with a prescription for oral antibiotics. He was fine for his first day at home, but the fever and chills returned the next day, and it was back to the hospital. Over the course of several more visits to the hospital, he caught multiple infections.
“By the time we got him into the hospital the last time around, he had four or five ongoing bacterial infections,” Chris says. “He had a fungal infection. Three of them were antibiotic-resistant. The doctors were throwing everything at him, giving him every medication known to man. The infections just kept coming back and back, bigger and stronger."
Carl's parents and doctors were optimistic that he was going to get better. He’d undergone open-heart surgery to repair the damage that the infection had done to his heart, and was ready to be released. That morning, September 2, Chris stopped by the hospital to visit Carl before work. When he got to his room, he heard the water running in his bathroom, and thought Carl was in the shower. After waiting a little while, he knocked on the door. Hearing no response, he opened it and found Carl slumped on the floor.
“The second I looked at him, I knew he was gone,” Chris says. He was 27 years old.
He dragged Carl out of the bathroom, called a code blue, and began trying to give him CPR. Hospital staff rushed in and whisked Chris out of the room. While they tried to resuscitate Carl, Chris called Joyce and tried to tell her calmly to come to the hospital because Carl’s doctors wanted to talk to them. He didn’t tell her then that Carl was dead. He didn’t want her driving to the hospital knowing. When she arrived, he went to the elevator to wait for her. Chris calls it the 27 seconds of hell.
“I flashed back over 27 years in that time period, and relived every good moment, while at the same time knowing what the future was going to bring us,” says Chris. “All I could think about was grabbing my wife and holding on for dear life because I knew that it would irrevocably change us.”
The Centers for Disease Control and Prevention (CDC) estimates that Carl is one of 23,000 people who die annually from antibiotic-resistant infections, in addition to another 2 million who develop infections. But those are fuzzy numbers. When the CDC released the estimates, then-CDC Director Tom Frieden said, “I want to emphasize, this is a bare minimum, a very conservative estimate.” Additionally, in an emailed statement, the CDC said it doesn’t have any estimate of the number of people who die from conditions that are complicated by an antibiotic-resistant infection.
The reality is that we really don’t know how many people die directly or indirectly from antibiotic-resistant infections, but it’s likely more than we think.
In the United States, much of our mortality data comes from death certificates. They help public health and health care systems identify emerging threats, determine the scope of the problem, craft prevention and treatment programs, and monitor their progress addressing them.
But according to Martha Sharan, a media relations specialist for the CDC, US death certificates often fail to capture the role antibiotic-resistant infections play in victims’ death. Carl’s death certificate says he died from cardiac arrest. It doesn’t mention that the reason he went into cardiac arrest was because an antibiotic-resistant infection attacked his tricuspid valve.
One reason for this discrepancy is that capturing antibiotic-resistance-related deaths isn’t standardized. Instead, attendant doctors often make judgment calls on death certificates, Sharan says. They decide how to parse the cause of death, which can be difficult if the patient has multiple conditions.
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“If someone has a chronic disease and then gets an antibiotic-resistant infection, was it the chronic disease? Was it the infection? Was it both?” Sharan says.
Without reliable death certificates, CDC relies on data from two networks, the National Healthcare Safety Network (NHSN) and the Emerging Infections Program Healthcare-Associated Infections Community-Interface, to track infections that patients caught in a health care setting, including many antibiotic-resistant infections.
But not all antibiotic-resistant infections originate in health care facilities, and the networks aren’t intended to capture other high-risk settings, like nursing homes. A 2017 American Journal of Infection Control study found that one in four nursing home residents carry antibiotic-resistant bacteria.
And there are other significant limitations with these systems’ ability to track the number of infections and deaths as well. The NHSN doesn’t track infections that aren’t linked to a medical procedure or device. The Emerging Infections Program conducts surveys in only 10 states and hospital participation is voluntary, so states and hospitals with higher rates of antibiotic resistance can opt out.
“We freely admit that we don’t know everything. We don’t have all the answers. We don’t know the actual burden, but we do know that it’s a serious problem,” Sharan says. The CDC says it’s currently working on updated estimates of antibiotic-resistance-related deaths and plans to release them later this year.
The United States isn’t unique in not knowing its actual rate of antibiotic-resistance-related deaths. The international standard for reporting on deaths, International Classification of Diseases (ICD) system, doesn’t currently have categories for deaths where antibiotics failed to work.
In a 2016 Journal of Global Health study, Mark Woolhouse, a professor of infectious disease epidemiology at the University of Edinburgh, and a team of researchers found that the current research fails to provide a comprehensive picture of the global impact of antibiotic resistance, and urged countries and public health entities to change the way they collect statistics on the issue. Woolhouse says he wants to see the ICD add categories for deaths linked to antibiotic resistance.
“If you don’t know the scale of the problem then it’s hard to make sensible decisions as to how much effort needs to be put into solving it,” Woolhouse says.
In 2014, then-UK Prime Minister David Cameron commissioned the Review on Antimicrobial Resistance to analyze the global threat of antibiotic resistance and propose solutions. The review’s 2016 final report estimated that at least 700,000 people across the world die annually from antibiotic resistance. Review Chair Jim O’Neill, an economist and former Commercial Secretary to the UK Treasury, noted in the forward that “even at the current rates, it is fair to assume that over 1 million people will have died from [antibiotic resistance] since I started this review in the summer of 2014. This is truly shocking.” Without major policy changes, the commission said the number will rise to 10 million by 2050 and cost the world $100 trillion.
However, the review’s work has come under scrutiny from some infectious disease experts, who criticized the report for failing to detail the uncertainties around how many antibiotic-resistant infections there are, how prevalent resistance is, and how many deaths can be attributed to it, and how those uncertainties impacted the review’s numbers. The message was clear: We need better data.
Marc Sprenger, director of the WHO secretariat for antimicrobial resistance, says WHO is working to develop a more complete understanding of the global burden of antibiotic resistance. To understand the real damage antibiotic resistance is doing, he says we need to know how many deaths antibiotic-resistant infections cause, how long they extend hospital stays, and how much they increase costs.
WHO is trying to get a better handle on worldwide antibiotic resistance rates and trends through its Global Antimicrobial Surveillance System (GLASS), a global data-sharing platform that WHO launched to standardize antibiotic resistance data collection and analysis. Laboratories submit their data to state or national systems, which in turn submit it to GLASS. In January, WHO released a GLASS report that found that antibiotic resistance is widespread across 500,000 people with suspected infections in 22 countries, though the rates vary by country.
Even with new GLASS data, Sprenger says the picture of antibiotic resistance is only “partially reliable.” GLASS is a voluntary system, and only 52 countries have enrolled. Of those, 22 submitted data about their levels of antibiotic resistance. Some of the countries with high antibiotic-resistance rates, like Italy and China, don’t participate. In some developing countries, patients don’t need a prescription to buy an antibiotic, upping bacteria’s exposure to the drugs through overuse and allowing them to speed toward becoming resistant.
“If you travel from Sweden to Italy, there is a real chance you will pick up one of these superbugs,” Sprenger says. “If you travel from the States to countries in Asia and you have a traffic accident, there is a big chance you will get one of these highly resistant bacteria, so if you return to a hospital in the States, you really need to be checked. If you’re healthy, it’s no big deal, but if you go to hospital with a lot of vulnerable patients, you will spread it for sure.”
Only seven of the countries that participate in GLASS are low-income. Often, developing nations can’t conduct antibiotic-resistance surveillance because they don’t have the basic health care infrastructure: There are few hospitals or no reliable labs. But in an interconnected, mobile world, not knowing where antibiotic-resistant bacteria are and how much they’re hurting people endangers everyone, from people living rural areas of China to the US soldier who injures his finger and goes to a local hospital in Reno.
Since Carl’s death, Chris and Joyce Romm have spoken out about the growing dangers of antibiotic resistance and met with policymakers to try to generate R&D funding for new antibiotics. They’re working with the Pew Charitable Trusts’ Antibiotic Resistance Project to tell Carl’s story and raise awareness. It’s their way of trying to create something positive out of Carl’s death.
“As difficult as that was, it was a way of proactively trying to make a positive out of something that was truly horrific,” Chris says. “I don’t know that it helps make anything better. It helps reduce the negative, if such a thing is possible. It helps keep his spirit alive.”
Without widespread changes, they know antibiotic-resistance-related deaths like Carl’s will continue to rise. They don’t want that for other people’s children.
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