By Marti Webb Slay
When Birmingham Aids Outreach (BAO) started in1985 as Alabama’s first AIDS service organization, it began addressing the devastating impact of HIV/AIDS on the Birmingham community. The organization now provides free services to over 1400 HIV-positive individuals, and they’ve grown to also serve patients with hepatitis C (HCV).
Rachel Horton, director of prevention, education and community engagement for BAO, explained the expansion to include HCV. “We traditionally targeted the higher risk demographics for HIV, but didn’t focus on the substance use demographic,” she said. “Then an agency in the Department of Human Health Services issued a grant focused on the intersection of HIV, hep C and substance abuse. We offered tests in inpatient and outpatient rehab clinics, sober living facilities, and methadone clinics, and found that the positivity rate for HCV was 25 percent, much higher than the HIV rate of one percent.”
According to Horton, the percentage of HCV positive people who have never used injectable drugs is getting larger every year. While injecting drugs is certainly an HCV driver, it can also pass among households and other communal living situations, including jails, prisons, and other living facilities, especially when a high percentage of carriers are not aware they have the virus.
This is why Horton advocates testing. “Most patients are asymptomatic, and without testing they wouldn’t know they had it,” she said. “Because HCV can be transmitted passively, it’s important that people know their status so they can take precautions at home and with their loved ones.
“There’s a lot of the stigma with being an HIV service organization so we know how to handle these things with compassion and confidentiality. Having a stigmatized disease can take an emotional toll, and we’re able to help people work through that part of the process.”
Once the BAO navigators get a preliminary result from a finger prick test, they give the patient a confirmatory test to look at viral load, assess the genotype, and determine whether or not medication is needed. “There’s a small percentage of people who test positive for whom it never becomes chronic, and they don’t need the medication,” Horton said.
For the remainder, however, lab testing that includes an ultrasound is required to assess treatment and meet insurance requirements.
“At that point, they can begin the medication. These oral medications are a profound achievement,” Horton said. “It’s the first virus we know how to cure. That’s huge.
“Depending on the medication, patients have a two- to three-month treatment. They’re not on medications the rest of their lives. It’s not just in remission. They don’t have it and they can’t transmit it anymore. That’s an amazing thing.”
Because insurance typically only pays for one course of treatment, BAO navigators help patients determine if it is a good time for them to pursue the cure, or whether they should wait. “Life is a little chaotic for people who are new to recovery,” Horton said. “They might not know where they are going next, and they might not have the bandwidth to keep up with a new treatment regimen.”
If patients decide to wait, BAO keeps in touch and checks back periodically to help determine the best time to follow through with treatment. When a patient is ready BAO helps them keep up with their appointments, and will drive them there, if needed. If the patient wants it, navigators will even attend the appointments as an advocate and to translate what the doctor is telling them.
“There used to be all sorts of requirements before patients could be treated for HCV (sobriety requirements, prior authorizations, fibrosis scores), and they vary by each state’s Medicaid policy,” Horton said. “Reinfection rates among people who are cured of HCV are extremely low, usually cited at about one percent. For this reason, we recommend to treat with no sobriety requirements.”
While BAO is there to serve the patients, Horton said they can help physicians through the process as well. “Any primary care physician can prescribe the direct-acting antiviral HCV medications. If they’re not comfortable doing so, we can help make referrals to providers who are,” she said. “We understand that these patients often have extra challenges, and providers are stretched thin. We can bridge those gaps for a patient who needs a little extra help.”
Horton acknowledged that HCV-positive patients often have substance abuse in their history, but she cautions against making assumptions about them. “Everybody, regardless of their background, has some sort of bias when it comes to substance abuse,” she said. “It’s easy to let one’s personal experiences influence the way they see a patient. I encourage providers to interrogate those biases when they’re making decisions about a patient struggling with substance abuse. These patients are worth it. They can recover. They are not a lost cause.”