It was a spring afternoon last year when Mary woke up from a nap at her parents’ home in St. Louis. She found herself unable to get out of bed, wracked by fever, grotesquely swollen and in pain. Her mother panicked and called an ambulance. Mary refused to go. She was addicted to heroin, and couldn’t bear the thought of going without it in the hospital.
She had not been feeling well for weeks. At first, it was a fever of 103 degrees, which never went away, and then her legs became swollen and she was barely able to walk. She gained 50 pounds of fluid in her legs, she said. It was even difficult for her to take her clothes off and take a shower.
“It was really brutal,” said Mary, now 30, who asked her real name not be used since she discussed illegal drug use.
Bradley, her boyfriend, was trying to care for her and afraid that she might die at any time. Like Mary, he was a heroin addict. “At night she would sweat and moan in pain,” recalled Bradley, who also asked his real name not be used. “And sometimes she would say things completely off the wall.” One day as they were going out, Bradley remembered, Mary asked him to get the dogs. But they didn’t have any dogs.
Mary finally went to the hospital and the diagnosis she got was chilling: infective endocarditis, a potentially fatal disease that often afflicts people who inject intravenous drugs.
Recent studies have shown that it is increasing significantly in states including West Virginia, Ohio and North Carolina, mirroring the continued escalation of injection drug use and leading to significant health impacts, costs and ethical questions for medical professionals. While it appears researchers have not yet investigated this issue in Illinois, data obtained through a FOIA request shows that cases of drug-related infective endocarditis are also on the rise here in Illinois.
While overdose is the leading cause of death among intravenous drug users, infections are among the most likely reasons for hospitalization, studies show. One of these diseases is infective endocarditis, a heart valve infection caused by bacteria that enters the body, spreads through the bloodstream and attaches to damaged areas in the heart.
An analysis of data obtained from the Illinois Department of Public Health shows that in the past 10 years, Illinois has seen an almost twofold increase in the number of hospitalizations for infective endocarditis combined with drug dependence, from 54 in 2008 to 103 in 2018.
The cost of hospitalizing a patient with drug-related infective endocarditis in Illinois averages more than $123,000 and has almost doubled in the past decade, according to data from the department. In 2018 alone, infective endocarditis with drug dependency resulted in $12.6 million in hospital charges, with patients staying in the hospital an average of 13 days, usually requiring complicated care. Of the patients hospitalized for drug-related infective endocarditis between 2008 and 2018, 481 were white and 307 were of another race.
Studies in other states and nationwide have shown that most patients suffering such drug-related ailments are on Medicaid or without insurance, meaning taxpayers and hospitals essentially foot much of the bill.
A West Virginia study found $17.3 million was billed by a largest tertiary care medical center to treat infective endocarditis patients from 2008 to 2015. In 2015 alone, the hospital spent $2.3 million caring for these patients.
“Over the last decade, there has been over $15 million in costs, and nearly $13 million of these costs went unpaid,” related to infective endocarditis in West Virginia, said lead author Mark Bates in an article from Cardiology Today’s Intervention. “This is a huge burden on the hospital and the community.”
Along with the financial strain, the trend creates an ethical dilemma for doctors who debate providing treatment knowing that the patient will likely resume addiction after hospitalization and have a high risk of another infection.
Increasing visibility
Duc Thinh Pham, a cardiac surgeon at Northwestern Memorial Hospital in Chicago, has seen more infective endocarditis patients in the past five to 10 years, likely due to injection drug use, he said.
Pham estimated he’s seen an increase of about 10% to 20% each year in infective endocarditis patients. He noted that even though it is a deadly disease and costs a substantial amount of money to treat, those costs are “only a fraction of the overall [cost of the] IV drug use problem.”
States like Ohio and North Carolina — where the opioid crisis is most severe — are also grappling with infective endocarditis.
Admissions for IV drug-related infective endocarditis at The Ohio State University Wexner Medical Center increased more than fourfold between 2012 and 2017, a recent study showed, and the death rate for these patients increased from 9% to 25% during the same time period.
“What’s most striking is how quickly this problem got out of hand. Five years ago, this disease was very uncommon for us. Now, it’s become so common that we can’t keep up,” said Serena Day, the study’s lead author and cardiology fellow at Ohio State University. “I don’t think people really understand how significant these bloodstream infections can be, leading to heart valve infections.”
In North Carolina, there was an approximately twelvefold increase in hospitalizations for injection drug use-related infective endocarditis between 2010 and 2015 in North Carolina, according to a Centers for Disease Control and Prevention report.
“If the opioid crisis is continuing to increase, so are all of those outcomes,” said Aaron Fleischauer, an epidemiologist at the North Carolina Division of Public Health. “I don’t fault anyone for being a user because we understand how addictive these drugs are.”
Unsafe needle use, doctors say, is normally the main cause of drug-related infective endocarditis.
“A lot of the drug users are reusing needles and supplies. They’re sharing needles with each other and not sterilizing them properly,” Pham said. “Their access to clean equipment is limited.”
Contaminated drugs and poor cleaning of the injection site might also introduce bacteria into the bloodstream and cause infections, doctors say.
More and more young people are suffering from the disease, likely because of drug use. The IDPH data shows that infective endocarditis patients are mostly between ages 18 and 40. Data acquired from the Cook County medical examiner through a Freedom of Information request shows that of 32 deaths related to endocarditis between January 2005 and June 2019, 14 of the deceased were under 40. Six of the deaths involving heart infections were noted as drug-related. People with infective endocarditis also may die of sepsis, the body’s often-dangerous response to infection.
Mary started using heroin at age 16. She and Bradley thought it was just “a good time,” he said, and almost everyone around them was using. They even encouraged their friends to try.
When they finally realized the negative side of using drugs, however, they couldn’t stop. Addiction has caused them to lose housing, friends, jobs and more, and infective endocarditis almost cost Mary her life, while the lasting impacts will continue to endanger her health.
“I never dreamed it was my heart or anything like that,” Mary said. “When we were young, you know, we tended to think we were kind of invincible.”
Financial burden on taxpayers
Injection drug users are disproportionately likely to be unemployed and living in poverty which likely means many infective endocarditis patients probably have little ability to pay hospital bills.
Mary finally went to the hospital when she was on the verge of death, after Bradley lied and told her they were going to the bank to cash a check. By that point, her vital organs were shutting down, she said doctors told her.
After a few days at St. Mary’s Hospital in Centralia, Mary was transferred to Saint Louis University Hospital. The doctor hoped to avoid surgery on the then-29-year-old, but the infected area was too large to be treated by medication alone, Mary said she was told.
Doctors may be reluctant to operate on patients with drug-related infective endocarditis because the patient is in such poor health, or they know the patient will likely resume drug abuse and put themselves at an even greater risk in the future.
Meanwhile antibiotic therapy used to treat infective endocarditis following or instead of surgery has to be done intravenously, creating another hurdle for drug users. Some patients can administer intravenous drugs at home, but many doctors don’t trust injection drug users to do so since they worry patients won’t complete the therapy or might take illegal drugs through the IV line.
Therefore, patients like Mary often have to stay at the hospital for weeks after surgery or be discharged to a continuing care facility until they complete the IV antibiotic therapy. Other treatments are also often necessary since the infection can spread from the heart to other organs.
Being discharged to a nursing home might be a cheaper way than hospitalization to continue IV antibiotic therapy, yet it’s still very expensive, doctors say, and it’s often not easy for substance abusers to find a nursing home that will accept them. Especially in smaller cities like St. Louis, nursing homes are often reluctant to take drug users. Mary tried unsuccessfully to find a nursing home for her post-surgery care, so instead she had to be hospitalized for two months.
Mary doesn’t know the total cost of her hospitalization, which was covered by Medicaid, but she was told that the midline IV used during the procedure alone cost $10,000.
“I was constantly told how expensive it was,” Mary recalled.
Karim Khan, an infectious diseases/addiction medicine fellow at Boston Medical Center who recently finished his internal medicine residency program at the University of Illinois at Chicago, has also seen many infective endocarditis patients in his practice. He said that the disease has to be diagnosed and treated inside the hospital.
“It’s an extremely tricky thing to be able to tell out on the streets,” said Khan, noting that the symptoms of the disease may be similar to drug withdrawal. “[Infective endocarditis] is generally a life-threatening disease that if you don’t get the treatment, you’ll die.”
But for many drug addicts, healthcare and self-care are not a priority. Like Mary, many would rather suffer through life-threatening disease than get medical care which means they won’t be able to use heroin.
Speedy, who declined to use his real name discussing illegal drug use, lives on the streets of Chicago and was diagnosed with infective endocarditis last year. He had felt something was wrong for quite a while, and everyone urged him to go to the hospital. He said he planned to go every day but didn’t actually make the move until he vomited blood. He ended up spending four months hospitalized and barely survived.
“Our primary concern is not being sick” from withdrawal, Speedy said. “We don’t want to go to the hospital because the hospitals won’t give us methadone or something to counteract the withdrawal.”
Such delays mean that by the time drug users with infective endocarditis go to a hospital, it may be too late to save them, and the resulting care will be significantly more expensive than if they sought treatment early.
Ralph Ryan, a retired cardiologist now working with the Chicago Street Medicine team, said that emergency room care is available for people suffering from a disease like infective endocarditis, and that patients won’t get turned away or have to wait in line for long. For uninsured patients, the hospital has to absorb the cost of emergency care.
“This is why the hospital is interested in finding ways to treat them and take care of them so it will not happen again,” Ryan said. “That’s why it’s such a big financial problem for the hospitals.”
An ethical dilemma
Mary was told by the surgeon that she had only “one shot” to get better, she said. She learned she might not be able to find a doctor who would assume the risk to treat her if she contracted infective endocarditis again.
“Once you get an infection, you’re at a higher risk for further infection,” Pham said. “It’s just a matter of time.”
Some patients are unable to tolerate multiple open heart surgeries, doctors say. Whether it’s safe and ethical to treat patients with multiple reinfections has been highly debated among doctors. They know it’s not uncommon for patients to resume their addiction after hospitalization.
It didn’t take Speedy long after being discharged from the hospital to resume his heroin use. A month or two later, he was injecting into his groin one night. When he got up 15 minutes later to look for a cigarette, he felt intense pain in his left knee.
“I limped immediately,” said Speedy.
He went to the University of Illinois Hospital two days later seeking treatment for his swollen leg, and he was told the bacteria from his heart had moved and attached to his knee. He was in the hospital for another two weeks, afraid of infective endocarditis but still craving drugs.
“It would be nice to wake up in the morning and not have to worry about shooting some dope to start my day,” Speedy said, noting that he’d rather think about coffee or breakfast like a normal person. “But no. Even if I do think of the coffee and breakfast thing, I can’t even do those things until I go to the dope.”
Even Mary, who was traumatized by her open heart surgery, couldn’t help resuming heroin use. She described the surgery as a “sick scary movie” where she remembers waking up with her limbs tied down and no one telling her what had happened. After the surgery, her reaction time was slow, her hair didn’t grow for months, her muscles were too weak to even twist the lid off a soda or lift up a mug to drink. She had to go through physical therapy to relearn how to walk.
“I couldn’t get up and use the restroom by myself,” she said. “It was nuts. I hated it.”
Mary and Bradley moved to Chicago from St. Louis last June in hopes of finding jobs. Mary was good at waiting tables but unable to do that after the surgery. Then months after she came to Chicago, she got an infection on the middle finger of her left hand, possibly because of injection heroin use. She didn’t go to the hospital until one month later when “the bone protruded from that finger,” and she ended up in the emergency room where the finger was amputated.
It’s not easy for doctors to see such young people struggling with addiction all the time, going back and forth to the hospital without changing the habits that landed them there.
“We struggle with it. It’s not a question that we have an easy answer for,” Pham said. “We do try to give everybody a chance.”
The best way to address this crisis, many doctors say, is to develop more support services to treat addiction.
“It’s like sitting on a chair, you have to have all three legs,” Ryan said. “Housing, behavioral health or mental health treatment and medication-assisted treatment for drug addiction.”
Education is also an important solution, as are syringe exchange programs and other harm reduction strategies that can prevent drug users from getting infective endocarditis.
“You have to educate them on what’s the safest way to live the life they want,” Khan said. “That means making sure that people have access to clean needles and supplies and know how to use them and know what warning things to look out for to seek medical care.”
Now Mary and Bradley have found their safest realistic alternative — they’ve been on methadone for several months. Mary is doing well, she said while eating chocolate caramel ice cream, except some of her teeth are falling out because of the methadone. She likes joking and chuckling a lot. She tries to make light of her past struggles, noting that the amputation of her finger makes it harder for her to win fights with Bradley, because she can’t flip him off.
She knows harm reduction strategies like methadone are key to helping her avoid further bouts of infective endocarditis, and she only hopes others in her position can curb or manage their addiction before going through the same trauma she did.