Although advances in research have made hepatitis C a treatable condition, many people still face significant barriers to testing and medical care.
Two such barriers across the country are a lack of insurance coverage and varying resource levels for people to get tested and treated.
The hepatitis C virus infects and causes inflammation of the liver. It’s an acute, short-term illness for some people that doesn’t require treatment. But
Despite these advances, stigma continues to surround hepatitis C infection. In a
Healthline spoke with Ronni Marks about these barriers and ways to overcome them. Marks is the founder and director of Hepatitis C Mentor and Support Group, Inc. (HCMSG), a national organization dedicated to serving people who are affected by hepatitis C and/or co-infected with HIV. The organization’s mission is to address healthcare inequities and to empower individuals and communities.
It all depends if you have insurance or not, and when I say insurance, I’m including Medicaid. If you do have insurance, you have [access to a] healthcare professional or a clinic.
In New York, we’re pretty lucky because I think we have the most robust [of any system]. But I travel to rural Appalachia, and I can tell you that there are people there that, number one, don’t have insurance, and number two, healthcare professionals won’t treat them because they’re using drugs.
So it’s a real problem in the rural areas. A lot of people don’t even have the money for transportation to get to a syringe exchange, a clinic, or the Department of Health, which in many states does the testing and referring. There is a lot of stigma around this.
If someone doesn’t have insurance, there are patient assistance programs [available]. The Hepatitis C Mentor and Support Group website has a whole page dedicated to patient assistance programs. And there are foundations that will fund some people.
But again, it depends on the state and it depends on the healthcare professional. We advocates made a lot of noise, and [because of that], a lot of the restrictions on insurance coverage for treatment are now gone. But there are a couple of states that still have restrictions. As I said, it depends on where you live.
A lot of healthcare professionals are providing what they call teleport [meaning, when training is not available in person, organizations like HCMSG can provide virtual support]. So these healthcare professionals are helping people who may not have had access to treatment before.
It could lead to liver cancer if untreated.
Today there’s a pill with barely any side effects, and it’s only one to three pills a day, depending on which one a company or healthcare professional gives you. And [once you start treatment, you can be cured in] 8 to 12 weeks.
Every state and every insurance is different. In certain states, If you don’t have insurance, there are [certain states that offer resources] where people are willing to work with you. There is teleport, and certain organizations have mobile units that go out into rural areas and treat people.
A lot of people feel that they deserve to get this. It’s very sad.
You have families that won’t let the person use their silverware because the [family member is] so afraid it’s contagious, which we know it’s not. There’s just so many stories like this.
It all comes down to stigma as well. Some healthcare professionals treat these people horribly because they’re really uncomfortable treating people who use drugs.
We treat so many different communities because each one has its obstacles, and each one has its positive things. I’ll tell you one thing, it’s a myth that people who use drugs don’t care about their health. They care about it very much.
They would go to their local organizations that test or the local clinics. The Department of Health will always help. They all have viral hepatitis units.
Or if they can get to an organization or a clinic that does teleport, they can get involved with a doctor who will treat them.
Everybody deserves to be cured no matter how they got [hepatitis C]. It’s important that they understand that the treatment is easy. As long as they don’t go back and do the same risky behavior, they will not get it again. But you can get reinfected.
Ronni Marks is the founder and director of Hepatitis C Mentor and Support Group, Inc. (HCMSG). After encountering a lack of education and supportive services following her own hepatitis C diagnosis in 1996, Marks started a support group at NYU Langone, which lasted for 18 years. She founded HCMSG in 2010. HCMSG works in partnership with other organizations to provide education and supportive services nationwide to anyone affected by hepatitis C and/or co-infected with HIV.