Chicago, IL – November 1, 2023 – Driven by the ongoing opioid epidemic and the sharing of needles, hepatitis C cases have been rising in the United States over the last decade, with the highest infection rates among young adults, including women of childbearing age. Without treatment, hepatitis C can lead to acute and chronic hepatitis, increasing the risk of liver cancer, liver failure and other conditions. During pregnancy, hepatitis C has been associated with low birthweight, intrahepatic cholestasis of pregnancy and preterm birth. The standard of care for treating hepatitis C in a pregnant person is to initiate treatment postpartum, which can start as soon as the person gives birth, but this approach has significant limitations.

Under the guidance of specialists at Northwestern Medicine and Ann & Robert H. Lurie Children’s Hospital of Chicago, an innovative treatment plan is now being offered during pregnancy, allowing the pregnant person to be cured of hepatitis C during the course of prenatal care, which may also substantially mitigate or even eliminate the risk of transmitting hepatis C to the baby.   

“Our goal is pretty simple – we want to improve the lives of pregnant patients with hepatitis C and their infants,” said Lynn Yee, MD, a maternal fetal medicine specialist and director of the Northwestern Medicine Women’s Infectious Disease Program. “Although treatment during pregnancy is not yet common, our professional societies support a shared decision-making process, including discussing with patients what is known versus unknown. We believe that by including pregnant people in hepatitis C research and treatment programs, we will work towards the public health goal of eliminating hepatitis C as well as addressing historical issues of excluding pregnant people from life-changing therapies.”

“There is still an overall lack of awareness among providers about the impact of hepatitis C in pregnancy and its transmission to infants,” said Ravi Jhaveri, MD, pediatrician and division head of Pediatric Infectious Diseases at Lurie Children’s Hospital. “Because hepatitis C acquisition is often associated with injection drug use, there’s still a lot of stigma and judgement among providers towards patients that prevents them from having open conversations. We hope every pregnant patient is tested for hepatitis C and those who test positive are quickly offered treatment.”

Testing and Treating Pregnant Patients

The greatest risk of acquiring hepatitis C belongs to people who work with human blood, body fluids or needles; use IV or intravenous drugs; have unprotected sex; are living with HIV; and are born to mothers with hepatitis C. Most people with hepatitis C have no symptoms, which is why testing during pregnancy is so important.

In 2020, guidelines implemented by the United States Preventive Services Task Force recommend all pregnant people are tested for hepatitis C antibodies during routine prenatal care. Patients who have evidence of hepatitis C antibodies undergo further testing and are referred to the Northwestern Medicine Women’s Infectious Disease Program. At this specialized program, for patients with evidence of chronic hepatitis C, the first step of the treatment plan is in-depth counseling and shared decision-making about the risks, benefits and alternatives to treatment during versus after pregnancy. As the first in Chicago and one of a few programs in the country to offer a treatment plan for eligible patients, Northwestern Medicine is a referral center for pregnant people with hepatitis C.

“Although treatment during the postpartum period is a great plan for many patients, there are significant limitations of this approach,” said Dr. Yee. “Many people lose touch with health care after giving birth, due to a wide range of factors. For example, in many states, pregnant people who have Medicaid lose their Medicaid 60 days after giving birth, and so there may be limited time to initiate and complete treatment. For other people, the competing priorities and burdens of being a parent take precedent over care for one’s own health. Yet, we know from ample research that pregnancy is a period of enhanced engagement in health care and motivation for improving health, making it the ideal window of opportunity for treatment. And not only does treatment during pregnancy mean that a pregnant person can be cured of hepatitis C during the course of prenatal care, but it is also highly likely that achieving cure before giving birth can substantially mitigate or eliminate the risk of transmitting hepatitis C to the baby, which would represent an incredible public health advancement.”

When patients desire treatment, physicians and infectious diseases pharmacists work on obtaining insurance coverage for treatment. Medications are then initiated, which are once-daily pills taken for 8-12 weeks. Lab surveillance is done before, during, and after the treatment course, in order to ensure there are no side effects and to monitor for viral cure. The experts at the Northwestern Medicine Women’s Infectious Disease Program also collaborate closely on research involving the responsible inclusion of pregnant people in hepatitis C research and treatment programs, and are able to refer patients to research programs when desired.

To date, specialists at the Women’s Infectious Disease Program have treated approximately five pregnant patients with hepatitis C. In all cases, patients have completed their treatment course during pregnancy and have achieved sustained virologic response – also known as a cure.

One of those patients, Kareena Wasserman, was shocked to learn she tested positive for hepatitis C while pregnant with her second child. She underwent the treatment plan during her third trimester which cleared the virus, and Wasserman delivered a healthy baby girl at Northwestern Medicine Prentice Women’s Hospital.

“I honestly have no idea how I contracted hepatitis C, especially since my husband and oldest child don’t have the virus,” said Wasserman. “But when Dr. Yee told me there was a path for a cure – not just for myself, but also the baby – I knew the reward outweighed any risk. I want other patients to know they’re not alone, and there is a safe treatment option available at Northwestern Medicine.”

New CDC Testing Recommendations for Infants

While infants can clear a hepatitis C virus at a higher rate than adults, if left untested and untreated for several years, it can cause scarring and fibrosis in the liver. Until now, testing in infants was often delayed until after 18 months of age due to interference for hepatitis C antibodies passed from mother to infant during late stages of the pregnancy, and the long delay meant most infants were never tested.

This November, the Centers for Disease Control and Prevention (CDC) is set to publish new guidelines for testing hepatitis C in infants. Dr. Jhaveri co-authored a commentary piece about the new CDC testing recommendations, scheduled to publish in PEDIATRICS on November 1.

“The CDC has simplified and clarified their testing guidance. Infants with hepatitis C exposure during pregnancy should have one single hepatitis C virus (HCV) RNA PCR test between 2-6 months of age. If the result is negative and they don’t have hepatitis C, they don’t need further testing. If the result is positive, they should be connected with a provider who can follow them, retest at a later date and ultimately get them treated by age three,” said Dr. Jhaveri. “I think these new recommendations will significantly improve our ability to do the right testing. They will reduce confusion among providers about which test to send when, cut down on the time to ultimately test and capitalize on existing newborn visits to send the testing.”

Northwestern Medicine and Lurie Children’s Hospital will soon be part of a national study conducted by the International Maternal Pediatric Adolescent AIDS Clinical Trials Network (IMPAACT), which will enroll eligible patients who are pregnant with confirmed hepatitis C and undergoing treatment.

The group also obtained CDC funding to design a video-based learning model for physicians to learn about the key aspects of hepatitis C in pregnancy and early infancy, how to improve decision-making conversations with patients, and how to start hepatitis C treatment.

“With our society's increased focus on social justice, we would argue that there has been a long-standing injustice here,” said Dr. Jhaveri. “Pregnant patients have been excluded from hepatitis C research and treatment for reasons that are rooted in historical practices. We hope that our work helps address this injustice and allows pregnant patients to receive hepatitis C treatment easily and openly without the barriers that currently exist.”

To learn more about Northwestern Medicine, visit nm.org and to learn more about Lurie Children’s Hospital, visit luriechildrens.org.

“I thought maybe I had Lyme disease, COVID-19 or walking pneumonia; I just wasn’t sure,” said 48-year-old Keller.

By September, he developed horrible headaches, and was admitted to Northwestern Memorial Hospital for testing. Blood work showed Keller had endocarditis (an infected heart valve) from Streptococcus mutans (oral bacteria) that can cause cavities.

“We’re all exposed to little bits of bacteria from the mouth, but Jay’s stuck to his valve because he had a congenital heart abnormality – he was born with two aortic valve leaflets instead of three, called a bicuspid aortic valve. It’s associated with a higher risk of cardiovascular complications, including endocarditis,” said Karen Krueger, MD, infectious diseases specialist at Northwestern Medicine.

“Because of the two-leaflet valve, the flow across that valve was not normal, and it lent to the valve getting infected more easily. Jay developed an infection of that valve, which then caused a stroke,” said Duc Thinh Pham, MD, cardiac surgeon at Northwestern Medicine.

Each time Keller’s heart would beat, it would push blood through the infected valve and flick pieces into his brain, causing an infected mycotic brain aneurysm, which is a very dangerous condition. Due to the important blood vessels involved, Babak Jahromi, MD, PhD, neurosurgeon at Northwestern Medicine, had to open Keller’s skull, cut the aneurysm out, and sew the affected brain blood vessels to other unaffected brain blood vessel segments. It was the first time Dr. Jahromi performed a double bypass for a mycotic aneurysm. The rare, 8-hour procedure preserved Keller’s important blood vessels.

“It’s basically redoing the plumbing of the brain by cutting out the part that’s bulging out and getting the remaining tubes to connect to each other,” said Dr. Jahromi. “Having a fusiform brain aneurysm is very uncommon and having that be related to a heart infection is even more uncommon. Jay came to the right place because Northwestern Medicine had the right team to deal with potential simultaneous disasters.”

Just a few days following brain surgery, Keller was already up and walking the hospital hallways. He logged seven miles in one day and couldn’t believe how much better he felt.

Two months later, Keller was back in the operating room with Dr. Pham who fixed the infected heart valve on April 21, 2022. Surgeons also found a small hole in Keller’s heart that they were able to fix. 

Keller recently finished cardiac rehabilitation and he’s ready to get back to running, biking, swimming, and spending quality time this Father’s Day with his wife, Grace, and their 7-year-old son, Hudson.

 “Obviously, it takes on a little more appreciation when you go through something like this,” said Keller. “You go back and re-visit your priorities.”

CHICAGO – A new study published in Annals of Clinical and Translational Neurology* looked at the evolution of neurologic symptoms in non-hospitalized COVID-19 long-haulers at the Northwestern Medicine Neuro COVID-19 Clinic and discovered most long-haulers continue to experience symptoms such as brain fog, numbness/tingling, headache, dizziness, blurred vision, tinnitus and fatigue on average of 15 months after disease onset. Researchers analyzed patients 6-9 months after their initial visit to the Neuro COVID-19 Clinic and discovered heart rate, blood pressure variation and gastrointestinal symptoms increased in long-haulers, while loss of taste and smell decreased overall. The findings are a follow-up to the Northwestern Medicine research team’s March 2021 study that discovered 85% of long-haulers experience four or more neurologic symptoms which impact their quality of life, and in some patients, their cognitive abilities.

“This new study is novel and reports the longest follow-up period of neurologic symptoms impacting non-hospitalized patients suffering from long-COVID anywhere in the world,” said Igor Koralnik, MD, chief of Neuro-infectious Diseases and Global Neurology at Northwestern Medicine, who oversees the Neuro COVID-19 Clinic. “We were surprised by the persistence of most of the debilitating neurologic symptoms of our patients, and by the late appearance of symptoms that suggest dysfunction of the autonomic nervous system.”

Researchers focused this study on patients evaluated initially between May and November 2020 who had mild initial COVID-19 symptoms (ex: transient cough, sore throat) and never required to be hospitalized for pneumonia or low oxygen levels. Of the 52 patients who completed the follow-up study:

- Average age was 43

- 73% were female

- 77% received the COVID-19 vaccine

- Most continued to experience neurologic symptoms, fatigue, and compromised quality of life 11-18 months after disease onset, an average of 15 months

Overall, there was no significant change in the frequency of most neurologic symptoms between first and follow-up appointments including brain fog (81 vs 71%), numbness/tingling (69 vs 65%), headache (67 vs 54%), dizziness (50 vs 54%), blurred vision (34 vs 44%), tinnitus (33 vs 42%) and fatigue (87 vs 81%).

While loss of taste (63 vs 27%) and smell (58 vs 21%) decreased overall, heart rate and blood pressure variation (35 vs 56%) and gastrointestinal symptoms (27 vs 48%) increased at follow-up.

Patients reported improvements in their recovery, cognitive function, and fatigue, but quality of life measures remained lower than the average population of the United States. Seventy-seven percent of the patients had been vaccinated for COVID-19, but the vaccine didn’t have a positive or detrimental impact on cognitive function or fatigue.

“Vaccination didn’t cure long COVID symptoms, but didn’t worsen them either, which is a reason given by some long-haulers for not getting vaccinated,” said Dr. Koralnik. “As new variants emerge and the number of patients impacted by long COVID rises, we’re now focusing our research on understanding the root cause of long COVID. We’re also devising interventions to improve the management of those patients and find the best treatment options for them.”

To date, the Northwestern Medicine Neuro COVID-19 Clinic has treated nearly 1,400 long-haulers from across the U.S. For more information, visit nm.org and to schedule an appointment, please call 312.695.7950.