Before she addressed her hepatitis C condition last year, Margaret Renea says her life was in a downward spiral. The 54-year-old South Baltimore native’s drinking was out of control. Her marriage was in trouble, and her hepatitis C was only making matters worse.
Then, in just 12 weeks, Renea gained a new future. She became one of the first 1,000 patients to be cured of hepatitis C at The Johns Hopkins Hospital—a milestone celebrated last May.
“This virus is a big problem, and the solutions are not simple,” says Mark Sulkowski, medical director of the Johns Hopkins clinic. “Still, we’re thrilled with the success we’ve had. We’re definitely making a dent.”
In 2014, nearly 20,000 Americans died of illnesses related to the virus—more than from HIV, pneumonia and tuberculosis combined. Baltimore has a higher rate of infection than most U.S. cities, with an estimated 60,000 cases.
But in the past two years, the outlook for people infected with the hepatitis C virus has improved dramatically. In October 2014, the U.S. Food and Drug Administration approved new drugs that inhibit the virus’ ability to reproduce. Depending on the strain of hepatitis, one pill a day for between eight and 24 weeks can completely clear the virus from a patient’s system.
Experts have called the treatment miraculous. Instead of managing multiple medications, patients take a single-dose combination of new antivirals that inhibit the virus’ replication.
Stigma-Free Care
The leading cause of liver transplants in the United States, the virus attacks and inflames the liver and can lead to cirrhosis, liver failure and liver cancer. Most people infected with the virus show no symptoms until they sustain liver damage, which can take decades. Prior to 1992, before donated blood was screened for the hepatitis C virus, blood transfusions could transmit the disease. Today, it is spread mainly via shared needles.
To ensure that patients can avoid the stigma that often accompanies the condition, the Johns Hopkins clinic has a purposefully vague name: the East Baltimore Specialty Clinic.
“We don’t want patients to have to walk around the hospital asking directions to the hep C clinic,” says Sherilyn Brinkley, a nurse practitioner who manages the clinic.
Nestled deep in the Alfred Blalock Building, one of the oldest sections of The Johns Hopkins Hospital, the clinic brings together physicians, nurses, pharmacists, case workers and community health workers.
Brinkley says that the program is designed to help underserved people. “We break down the barriers those patients face—things like transportation and insurance. Those are things that we take care of for patients so that they can concentrate on getting better.”
Still, the process can be daunting. Sulkowski and his colleagues present patients’ treatment plans in manageable pieces, coaching and counseling them along the way.
“Maybe the patient has been through treatment before, unsuccessfully,” Sulkowski says of a common occurrence. “We make sure they know that this is going to be different. You’re not just going to walk out of here with a bottle of hepatitis C treatment. Through counseling, through peer groups, through our nurses and our community health workers, we’ll be with you every step of the way.”
‘A Life-Changer’
The new medicine is not cheap, at roughly $1,100 per dose. A 24-week regimen costs $189,000. Sulkowski says that sometimes, cases need to be submitted to insurance or government payers multiple times. But clinic staff members work hard to find the dollars to cover patients’ treatments, no matter their insurance status.
Many cured patients remain connected to the clinic through a peer support group called The Cure Club. For example, some patients need to avoid alcohol because of compromised liver function. Others with histories of opioid abuse or drug use involving needles must avoid relapse and a risk of reinfection. The Cure Club is led by a counselor who has been through the program. It gathers cured patients and those in various stages of the medication regimen to talk about their experiences and encourage one another.
Such support begins with a patient’s first visit to the clinic. Renea says that appointment was a “life-changer.” Her doctor, Oluwaseun Falade-Nwulia, listened patiently to Renea’s story of depression and alcoholism.
“Then, Dr. Falade said something that broke me down,” says Renea. “She said, ’I believe in you.’ I cried and cried.”
Two weeks later, with Falade’s help, Renea was approved by her insurance for treatment and began an easy, once-a-day pill regimen. Until recently, patients undergoing treatment for the hepatitis C infection endured a noxious cocktail of antivirals and interferon, leaving many who took it feeling sick and run down. The treatment rarely led to a cure, aiming instead at merely tamping down the virus.
Renea reports mild nausea on the first day of her treatment but no side effects after that.
Three months after taking her first pill, Renea was free of hepatitis C. She hasn’t had a drink in nearly a year, and she returns to the clinic for her checkups every few months. She feels like herself again—cheerful and outgoing.
“I’m so grateful to my doctor and to everyone at the clinic,” she says. “Those are some very special people. They really care about me.”