Exclusive Hepatitis C Interview: Daryl Luster
Posted on December 4, 2015
So my first question is, can you please tell me a little bit about yourself?
DARYL LUSTER: Oh, gosh, what’s to tell? I’m 61 this month. Regarding my background, if somebody had said to me 10, even 15 years ago, that I would be involved in health advocacy, I would have said, huh? No. Really? So it’s been a real shift for me.
I come from a business background. I’ve been in business for most of my life. When I say business, I mean my own business, which includes a number of different businesses, but mostly centered around architectural millwork and furniture-making, design, and manufacturing.
I have a creative background in music as well, and I like to create things. And so, because of my own experience with being diagnosed with hepatitis C, I turned my interests into yet another creation, which is to raise awareness and bring issues that affect communities most affected to the forum.
What I discovered in my early days, from contact with peer support groups and people living with hepatitis C, is that a good portion of us were of my vintage (ie, baby boomers).
So my work as a freelancer was primarily focused around raising awareness, and so, I mobilized people from around the world through social media to get out on World Hepatitis Day and inform the general population about the need for more screening. That led to my getting involved with an organization called the Pacific Hepatitis C Network. We are a non-profit society based in British Columbia, and our primary work is in education and awareness, but my own focus is around advocating for improved access to care and treatment for the HCV community. Harm reduction is a key piece of what I believe, and what our organization supports.
Something I spend about 20 hours a week doing is peer navigation. A large part of this activity is with Help for Hep, which is a helpline that is based in New Jersey. Help for Hep has a number of peer counselors. Most of our counselors are people who have had experience with hepatitis C.
Due to my affiliation with the Pacific Hepatitis C Network, I got involved with Action Hepatitis Canada, which is a national advocacy coalition. It’s a coalition of 37 different organizations from across Canada that are active in the delivery of medical services and education/awareness.
All along the way, I’ve tried to be engaged with the scientific community, the medical community, civil society, as well as the community affected and those at risk. It is sometimes hard to measure success, but we’re talking and we’re meeting. I’ve attended a number of meetings with people who are involved in all of those different areas, and it’s really with the advent of the new, highly-curative treatments in the last couple years, that things have really changed.
I was treated successfully nearly six years ago in an early clinical trial with a direct-acting antiviral, and I was cured. The new treatments really work for most, and we’re seeing this in a lot more people, but unfortunately not everybody, as access to care and treatment is certainly not as universal as we would like it to be. The numbers are still very low in terms of how many people are accessing treatment.
In your experience as a patient and also as someone who now works in this area, what are the biggest challenges associated with the hepatitis C epidemic in the U.S.?
DARYL LUSTER: In the U.S. and the world, the issue is access to screening, quality care, and treatment. I mean, really, that’s a major issue. It’s quite complicated in the U.S. because of the fact that there is no real universal health care in America. In fact, some people have no insurance, no coverage whatsoever.
Many people in the rest of the world don’t understand that there are public health systems in the United States, albeit not well funded. The fractured nature of healthcare in the U.S. makes the challenges greater in my view. I see healthcare as a basic human right, and in my opinion, the current essentially “for-profit” healthcare model in the US is morally wrong, and is something that continues to frustrate significant progress in slowing the hepatitis c epidemic. This issue, unfortunately, is not unique to the U.S.
You mentioned cost. So I was wondering regarding the cost of these agents, does the cost of the newer oral agents and the HCV regimens introduce a socioeconomic and ethical consideration in the treatment of HCV?
DARYL LUSTER: Yes, I think it does. I think that it’s a bit of a sticky and tricky area as well. I have tried to approach hepatitis C viral infection as a health issue, but there are social determinants related to access to care and treatment. People who have few resources and low incomes do not have equitable access to good healthcare, and this impacts quality of life, which is a cost to all of us as a society. We certainly have a significant number of people living with HCV or who are at risk who are part of the marginalized community; that would include people who inject drugs or who are drug users. Good harm reduction and healthcare services should be available, and should include the provision of healthcare services to people who are impoverished and the homeless. The cost issue is real, but the cost of not addressing HCV looms down the road as a much bigger cost, as people will need even more services and medical care.
So yes, I think there is a socioeconomic and ethical consideration, and I think that stigma plays a role as well, Stigma is something that I have felt personally, and I know that most people who I have met who have been diagnosed with hepatitis C have had to deal with this. And really, I’d go a little further than just calling it stigma; it’s discrimination.
I’ve heard that a lot of patients do not even want to be screened because of the stigma
DARYL LUSTER: Well, an awful lot of people that I’m in contact with through the helpline and through peer support groups, whether face-to-face or online, never disclose beyond immediate family. Many won’t disclose to colleagues or coworkers, because of stigma, because of discrimination. I have felt that. Oddly enough, the worst discrimination I’ve felt in my “journey”, as we call it with hepatitis C, is with health care providers, “uninformed” health care providers.
I’ll just give you an example, I had an accident where a chunk of my arm was cut away and I went to the ER, and back then I always thought that it was my responsibility to report that I, in fact, I had been diagnosed with chronic hepatitis C. And so, I did tell the health care providers, and I was treated differently, no question, and there were no painkillers offered to me.
Now, that’s not to say that I have felt discriminated against or felt stigma in every health care situation. I’ve had some ongoing health problems since I was cured, which may or may not have been related to living with hepatitis C. You know, the viewpoint regarding people with hepatitis C is fairly liberal where I live, especially regarding things like harm reduction.
I have disclosed my own status pretty much from day one, and that was mostly because I was not going to be marginalized. I just was not going to allow it, and also, at the same time, I couldn’t very well be effective as a person trying to raise awareness and advocate for people like myself, if I didn’t even disclose that I was living with it as well.
So I was also wondering if you can please share your thoughts about targeting the newer oral HCV regimens to specific populations such as active injection users and incarcerated individuals.
DARYL LUSTER: I agree with this 100%, and support it fully. Note that some data presented at AASLD 2015 supports this. I know treating physicians like Dr. Brian Conway here in Vancouver at the Vancouver Infectious Disease Center, who have been treating people who inject drugs (PWIDs), and it’s a pathway to people looking at recovery alternatives, yes, even changing lifestyle, and I hate that word, “lifestyle.” I hate the word “addiction” too. Because, I mean, it is addiction, but on the other hand, it’s not like people who have addictions really have a choice, you know? And that’s how people who inject drugs are marginalized, because they’re deemed to have made poor choices. It’s wrong to deny treatment and care to people who have made poor choices. I mean, the impetus to deny services to these people really is the heart of the message associated with the stigma around drug use, isn’t it?
You know, it is a difficult community to reach, the PWID community, less so with people who are incarcerated. In Canada, the federal system will screen and does treat, but the provincial system, at least in British Columbia, does not. Treating people who are incarcerated is important in any jurisdiction. So there are people that are advocating specifically for that. One of them is a Dr. Farley here in British Columbia. He’s a treating physician as well.
We’re starting to see some signs of change in attitudes regarding marginalized communities. The whole cost issue around these new therapies has certainly been a big media magnet. But I would argue that, well, from my perspective, it’s not an argument in favor of treating, because it puts the focus on costs. From my viewpoint, we can’t afford not to treat people, and there have been studies addressing this, the burden of disease. If we don’t treat people over a period of 20 years, there are going to be additional costs to the health care system. All health care systems will be burdened, whether public or private, and that is not taking into account the human cost.
Yes, and actually, that applies to another question that I have for you: what are your thoughts on restricting hepatitis C therapy to patients with advanced fibrosis or severe complications and symptoms?
DARYL LUSTER: Well, I think we should treat everyone who wants it, and I’ve said that, and I think I’ve been consistent. But I will say this, firstly, we need a strategy and a plan that can be implemented, and it may mean that we have to do something that’s phased in over a period of years.
So I think we should treat everyone, but I’m also realistic in terms of the cost associated with that. But there are also capacity issues that come into play. Let’s say there are two-and-a-half, three million people in the U.S. who are living with hepatitis C, and we want to treat a million of them, we can’t treat a million people this year. It isn’t going to happen.
The promise of these new treatments was that, and I even believed it based on the clinical data, was that even a primary physician could treat people with some of these drugs because they’re associated with low side effect profiles, and short durations of treatment. I don’t necessarily agree with that now. I have changed my tune on that to be honest. And I just wrote an article about an issue that I see again and again, that patients aren’t being screened enough, and that means workups, tests, scans, etc, prior to treating.
So if somebody has advanced fibrosis, that’s a lot different than if they’re “F1” and they have no underlying comorbidities that cause issues. I mean, sure, that person can probably get a month’s worth of pills and show up for blood work every month or two and they’re fine. But there are a lot of people that need closer monitoring than that.
So it’s cost and capacity. There is a business school in the West, a Jesuit school, that has put together a model, basically, a national strategy and plan for addressing hepatitis C, and it’s a model that possibly can be used in any country and it’s really a framework. It’s what’s needed globally, and I don’t mean that it’s something that the World Health Organization would implement or be responsible for, but certainly on the national level. It can even be translated at a State or a provincial level as well.
I was also wondering if you can talk a little bit about your thoughts about birth cohort screening for hepatitis C. What challenges have you seen with the implementation of this approach?
DARYL LUSTER: Well, I think the challenges have been that it’s just a recommendation. Now, I understand that we can’t force people to be tested. And I think, and many others think this, that it’s really important that we don’t just screen anybody, that if we’re doing antibody screening, we need to have follow-up to actually determine if people are chronically infected, because if you are antibody-positive, that doesn’t mean that you have chronic hepatitis C. You can live the rest of your life antibody-positive, as long as it’s not a chronic infection. You can tell if it’s chronic in the first few months, typically up to six months.
In some situations, people are, in fact, tested for chronic hepatitis C at the same time, but we’ve seen free screening events occurring where they’re just been tested for the presence of antibodies….
Some people may not want to be tested because they don’t want the stigma attached to them. So, of course, there has to be informed consent, and yes, I think that the screening of baby boomers is a good idea. Data show that they represent the largest cohort, the largest group of people identified as living with hepatitis C, and I think that these data still stands up, at least in our part of the world. It doesn’t necessarily work in other parts of the world, because the modes of infection are different, etc.
Unfortunately, birth cohort screening just hasn’t been all that effective yet, because real, large-scale awareness advertising campaigns have not been funded very well. In fact, I think the advertising that Gilead has done has probably done more for the cause in this past year, because it seems to be targeting baby boomers. However, everybody in those adverts look healthy and appear to be “having a great time”, and have lots of money, which I have problems with because that just simply isn’t everybody that’s living with hepatitis C, is it? They’re targeting baby boomers with financial means and insurance, and we just can’t forget the other groups, the other cohorts that are living with hepatitis C. I mean, it can’t be just about the baby boomers. It cannot be.
I think within certain populations, absolutely, there needs to be confirmatory testing included. People need assessment. People need proper assessment, and there are so many different issues that come into play in different screening cohorts that moves beyond baby boomers.
And not all baby boomers are White and middle class, either. There is a perception in some communities that, in fact, all baby boomers are White and have plenty of money, and that they can just go to the doctor. Well, that’s not entirely true. So I think we should screen everybody. You want the short answer from me? Screen everybody.
In some areas of this country like Kentucky and Tennessee and West Virginia and Indiana, there was basically a 150% increase in the rate of hepatitis C just over the last year. Have you heard that number?
DARYL LUSTER: Yes, and in some places, we have seen an increase, while in other places, we have seen a decrease. Where it’s increasing the most is in the population who inject drugs. And that speaks to another issue, harm reduction, which is an issue that is key to my work, and the work of others who are advocating for people affected by hepatitis C. I mean, as a society we need to embrace the science that supports harm reduction as being a good thing to do. We need to make it available in prisons, we need to make it available everywhere it is needed. Unfortunately, I know that the notion is that “we’re facilitating drug addiction”.
I’m quite shocked when I hear some people talk on a global level about what’s going on in their countries, the attitudes. I recently heard that in a particular developing country, their perception of people who have hepatitis C is that 100 percent of them are PWIDs. I just don’t believe that. This is a convenient way of marginalizing people with HCV.
But as far as increases in hepatitis C infections, yes, there are geographical areas that see increases. I tend to look at this issue more broadly. I think that the public health agencies in those states, with the support of federal funding and health agencies, need to address those issues in a sensible way, and that means programs and funding. But until they can get past the notion that it’s a “bad thing” to have good harm reduction practices in place, and to support them, it’s not going to happen, is it?
I really appreciate you sharing your perspective with us because it’s always interesting to hear from someone who’s going through the system, and a physician can’t tell you this. They can’t tell me what actually a patient knows and experiences. So I really appreciate this conversation.
DARYL LUSTER: Thank you for taking an interest in the perspective of someone who has lived with HCV. It is important for our voice to be heard, and for those of us from the community to be part of the dialogue, when we are the ones directly affected.