International Conference on Viral Hepatitis (ICVH) 2014
Helen-Maria Lekas, PhD, Gloria J. Searson, MSW, Alyson L. Harty, RN, BSN, William Thompson
June 23, 2014
Editor's Note: During the International Conference on Viral Hepatitis, held in New York, some of the participants in a panel discussion titled "Patient Perspectives on What Providers Need to Know About Stigma and Other Barriers to Hepatitis Care" convened afterwards for a discussion. During the conversation, they discussed the stigma surrounding hepatitis C and some of the barriers to diagnosis and treatment for patients.
Living With Hepatitis C
Helen-Maria Lekas, PhD: My name is Helen-Maria Lekas. I am from Columbia University, and I am in New York at the International Conference on Viral Hepatitis. I'm here with a panel of experts, including Gloria Searson, Alyson Harty, and William Thompson. I would like to start by asking you about stigma. As patients and experts living with hepatitis C virus (HCV) infection, what do you want your providers to know about the stigma associated with the disease?
Gloria J. Searson, MSW: Stigma is horrible. I don't want to be looked at or judged, and I don't want you to bring your biases into the room with us. I just want you to treat me as a human being and take care of the problem.
Alyson Harty, RN, BSN: I agree, from both the provider and patient perspective. When I was 17 and I found out I had HCV, I didn't want to tell any of my friends. You don't want your friends knowing that you have a virus because it's often associated with other viruses that have a broad stigma against them, and there is no need. You got it -- however you got it, you got it -- let's solve the problem.
Dr. Lekas: What can providers do to ameliorate the stigma associated with HCV?
William Thompson: One thing that I find very important is the support group that I go to. We get a lot of information from the doctor and we also get a lot of information from other patients. To me, stigma is like "sticks and stones can break my bones." It doesn't really affect me. I don't think anybody can say anything to me that would make me feel bad about my condition, especially when you have conditions yourself. It's all up to the individual in how you feel about it.
Persisting Barriers to Diagnosis and Treatment
Dr. Lekas: I'm very glad to hear that you don't internalize other people's stigmatizing attitudes. If we leave stigma aside, what are some of the other barriers that patients are encountering in getting care for HCV?
Ms. Searson: Patients don't have the same care teams available to them for HCV that they did for other diseases. One of the good things about HIV was that they had funding and manpower to help deal with teaching the patient things that the doctor may not have been able to get through to the patient, or convince the patient of the urgency of something. They even had someone there to provide the education and support so that they can buy into the fact that they had the disease. There are some systemic barriers that we have to fix in healthcare in general. It is disproportionately dispensed in different areas, in different ways, and we have to make sure that people can access the same things wherever they are geographically. That's one of the largest barriers. The treatments are good, but we can't just take them without understanding them. So, who is going to provide that education is the key.
Dr. Lekas: Do you think that patients with HCV know about the new treatments coming down the pipeline?
Ms. Harty: It varies. You have your highly educated patients who know that they have HCV and who have been following the disease and the press releases, and then you have patients who were told back in the late 1990s and early 2000s that they have this problem but nothing can be done about it. There is a wide variety, and we need re-education for those patients who were turned away from care. For example, they may have been told that because they were black or obese that the treatment wouldn't work for them. We need to relink these patients back to care, as well as screen the 80% of patients who we know haven't been tested.
Ms. Searson: The campaigning and awareness are out there for those who access social media or the Internet or who watch television, but there is a whole group of people who do not access information the way it is being disseminated. If you are not in the healthcare system or working with a substance abuse group, a senior population, or a veterans' group, you still may be out of the loop for hepatitis. We need the healthcare team around patients who get HCV to understand them as a whole -- where they are and what may or may not be necessary for this particular patient to get through treatment. The pills and the medications only address one barrier, and that's the biological barrier. They don't address the personal issues or the systemic barriers, and they certainly don't address the infrastructure and lack of healthcare providers able to deal with this disease.
Improving on the HIV Model for Hepatitis C
Dr. Lekas: Would you propose a team-based approach for hepatitis C, like that for HIV, with a provider, a medical physician, and a nurse?
Ms. Harty: We need a lot more funding for that. Personally, working in a private office, I know that we don't have the funds to hire a psychiatrist. I am the social worker, psychiatrist, and nurse -- all of the above. It takes a lot of manpower to put people through this therapy, and the providers also need more support from the states and the private insurers who don't pay for psychological therapy unless the patient has Medicaid and can access a therapist. It is very hard for privately insured people to get the psychological therapy that they need.
Dr. Lekas: Do you think the HIV model is a good one?
Ms. Harty: Definitely.
Ms. Searson: Yes, especially because this is a complicated thing to explain, and you want to have people you can trust, like we have with case managers in HIV. But here is one thing I would like to see be different from the HIV model: We did not bring the case managers along in the science, so they were not able to offer the support to patients around understanding the disease and the importance of medication, because they were left out of the education. If you create a team, then all of them have to have the necessary information. In HIV, that is where we made some missteps; we kept the science separated from the prevention and services, and there was no interaction. The patient was better known by the people who knew the least about the disease itself and the benefits of treatment. Without that knowledge, how could those who have the confidence of the patient convince the patient of the importance of being treated? That is why we have people who are still not detectable, as well as the continuing struggles of being on multiple regimens, because the patients didn't get buy-in from the people that they trust.
Mr. Thompson: At the facility that I go to, Mount Sinai, the doctors work as a team. They all discuss the patient and reach a conclusion about where they are going with the patient and what their expected results are. They are very informative. I didn't know that I had stage 4 cirrhosis or that it could be stabilized. To me, stage 4 meant I was going to continue to decline. I didn't know that the liver repairs itself, and that with the elimination of the HCV infection the liver can regroup and reverse, to a point -- it's not going to be a completely healthy liver again. But I learned all of this from the doctors and the team where I get care. How well the doctors work together depends on the facility that you go to.
Dr. Lekas: With the massive restructuring of our healthcare system, this is a good note to end on. How HCV treatment will be integrated into this restructuring is an important issue. Thank you all.
Lekas HM, Levin J, Searson G. Patient perspectives on what providers need to know about stigma and other barriers to hepatitis care; March 17-18, 2014; New York, New York. Panel 1.