HCMSG - Hepatitis C Mentor & Support Group, Inc.
Search
  • About Us
    • Our Mission
    • Board of Directors
    • Medical Advisors
  • Resources
    • Corona Virus
    • Hep C Risks
    • Hep C Facts & Stats
    • Medications and Treatments >
      • Patient Assistance Programs
    • Reading
    • Links
  • Programs/Training
    • The Circle Model >
      • THE CIRCLE Registration
      • Group and Facilitator Guide
    • Hepatitis C Online Training
    • The Hepatitis C Education and Support Group Assistance Program
    • Healthcare Provider Training
  • Newsletter
  • Blog
  • Support Us
  • Contact Us

Looking Forward in Hepatitis C Treatment, With Trepidation

7/8/2014

1 Comment

 
An Interview With Tracy Swan

By Terri Wilder

From TheBodyPRO.com

March 31, 2014

Each year at the Conference on Retroviruses and Opportunistic Infections (CROI), a unique panel convenes on the first day of the meeting. This event -- the Martin Delaney Panel -- highlights a critical issue that lies at the intersection between HIV clinical research and HIV advocacy. At CROI 2014, the theme of the panel was "Hepatitis C: From Trials and Tribulations to Triumph." One of the panelists was Tracy Swan, Hepatitis/HIV Project Director at Treatment Action Group and a longtime, outspoken patient advocate on issues related to HIV/hepatitis C coinfection. Our correspondent Terri Wilder spoke with Swan shortly after the panel.

It feels like this year, 2014, is shaping up to be the year of hepatitis C. What are your thoughts about developments that are coming down the pipe, and what do you think about the challenges that are going to come with these new hepatitis C drugs?

It's funny. You keep seeing these trials with cure rates of 95% and 100%. And it's wonderful -- don't get me wrong -- but it's almost mind-numbing after a little while. You just think: How do you distinguish? Everything is well tolerated. What is going to be the best way to get things out there to people?

I think we really need screening programs. We need to identify more infected people. And we really need an infrastructure. So, as excited as I am about the drugs, and as grateful as I am to not have to keep talking to people about drugs that give them a lot of side effects and won't work very well ... Think about it: If the number of people with HIV quadrupled overnight and all the things we take for granted were stripped away -- the infrastructure, the funding, the programs, the case management, the services, and even the community; when so many people are undiagnosed, it's kind of hard to form a community -- if you strip that all away, you've got hepatitis C, on the downside.

Then, on the upside of things, you've got a cure.

I think 2014 is the year we bring those two together. But we have to figure out how to bring the cure to the people. And the drug prices are going to be a horrendous problem.

 

 

Let's talk about screening. The U.S. Centers for Disease Control and Prevention [CDC] came out with its recommended age cohort screening. The New York State Department of Health implemented a rule, effective Jan. 1, that folks in a certain cohort be screened for hep C. It feels like people are trying to roll these rules out, maybe in reaction to these new drugs.

How effective do you think these kind of cohort-based screening programs are going to be?

They can't be less effective than what we had before. I think some of these are really beginning to pick people up. What concerns me is, there are so many people newly entering care because of the Affordable Care Act. They may be getting slammed with multiple diagnoses all at once, because they haven't been in health care and don't know why they're feeling so crummy.

There might be providers that now feel that they need to screen, but then don't know what to do with people once they have a positive antibody test. I still think it's much better to screen as a critical public health step.

But there are a few things. It should be tied to surveillance programs, so you could collect the data while you're providing services to people, or nested within them, somehow. Also, yes, the baby boomer cohort is an important group, but you keep seeing all these reports of high infection rates among young people who are injecting drugs. If you're telling doctors who are already feeling pretty overloaded to do one more thing, they're not going to step out of that and start saying, "Hmm. I wonder who else I should be looking at now?" if they're trying to squeeze five people into an hour.

The cohort that we're talking about is people born between 1945 and 1965. I would assume that data drove that decision. But your point is that we're still missing people.

Well, the data we have are limited. It's from the NHANES survey -- incarcerated and homeless people -- and other very high-prevalence populations were not included. So, (1) we have an underestimate for the whole population; and (2) I don't quite understand how the incidence went from 300,000 cases a year down to about 16,000 cases over a decade and a half.

There are some reasons. Crack: People stopped injecting and started smoking more. But I think nobody was really counting, and we never developed the health care infrastructure that we needed to really characterize and then begin to address this epidemic. We have a lot of assumptions. There could be way more people of every age out there with hepatitis C.

Earlier, you mentioned the Affordable Care Act [ACA]. What do you think is going to complicate ACA implementation and getting folks who have hep C on treatment and into care?

I'm a big fan of single-payer health care. I would have much rather seen a system like that. I think we have a collapsing health care system with people entering it who don't even know how to use it.

No one's saying, "Look: People probably aren't going to be that nice to you. They're going to demand all this information from you. You're going to have five minutes with the doctor. You might hear something scary." You're not having anyone say, "What's on your mind?" How do you ask these questions? "How can we make the most of this appointment?"

I think we really need some health care literacy training for people so they feel comfortable going to a medical doctor. And when they get a diagnosis, whatever it is, they feel more like they have some control over what their next steps are. Hepatitis C has last-on-the-list syndrome. It doesn't progress quickly. "I don't have to deal with it right away." Treatment's too yucky. Treatment's too expensive.

Hopefully, the new drugs will really push the envelope, and people who need to be treated and cured will be. But it's not really clear how that's going to play out.

Let's talk about the new treatments for hep C. What is the reality? What are we looking at, in terms of people being cured?

I think we're really looking at something: 90% and over. It might be a little lower for people with cirrhosis. It might be a little lower for people who have more advanced liver disease.

The one group of people I'm worried about the most are the people that have late-stage or decompensated cirrhosis. There's very little known about what will be safe and effective. We don't want people to have to get a transplant, and even if they wind up there, there are insurance issues; there's organ scarcity. That's not the outcome we want to see.

And if they get a transplant, we want to be able to treat their hep C if it comes back afterwards -- because it almost always does.

Is this for both monoinfected and coinfected folks with HIV? Is the cure rate about the same, or is there a difference?

Today, we heard it's better in people with HIV. There was a moment when people were stunned, because we're all so used to hearing it's not. I thought it must be due to adherence. The presenter said, "Yeah. I think people really are used to taking pills. They know how to do it." To get in a trial, they had to have an undetectable viral load. They're taking their pills, and if they take their pills, their pills are working. It's always nice when that happens.

 

Let's talk about the cost of the new hep C drugs. It is a very sore spot for a lot of community activists who care about this issue. I think the worry is that if you don't have the right health insurance coverage, you're not going to be able to get access. What's happening out in the community? What are you hearing?

One of the things that we've thought about is how to get access for people who need treatment the most right away, with what's available now, whether it's off-label or not. I've done some work with the National Viral Hepatitis Coalition and [various doctors and advocates]. There's a "Dear Payor" letter explaining why this off-label expensive combination is good.

But, quite frankly, it's a very distasteful position to be put in, to [have to say], "Let me sell your totally overpriced drugs, just for people who need them." Something's got to give. The pharmaceutical industry should profit. We need to support innovation. But there is a point where you really have to ask: How much does a company really need to make?

We've seen data that say it costs less than $150 to make 12 weeks of sofosbuvir [Sovaldi]. That's Andrew Hill's study. It's based on a few million treatment courses.

I realize there are acquisition costs; there are development costs. But maybe when everybody starts shutting down the tap, that's when Gilead will be ready to come to the table and say, "We're going to have to make this affordable."

We're having this conversation in March 2014. What do you think the conversation is going to be like in March 2015, when we're all back at CROI? Do you have any guesses as to what the next year is going to look like?

I think a lot of people will start entering treatment. More people will get screened. More people will get cured. But the floodgates are open [in regards to] paying for things right now. As soon as there are more drugs and uptake surges, I think they're going to start shutting down. What I'd hate to see is [health care providers] putting people on a regimen that's a lot harder for them to get through, and possibly less effective; and then saying, "OK. That didn't work. Now you get this stuff."

Do we think that there's going to be something in the future that's better than the Gilead drug? Is there anything else that's coming?

We need another good pan-genotypic drug to pair with it. There is one, an NS5A inhibitor called daclatasvir, from a different company, BMS, that will be out later this year. That's going to be a good combination. When you look from a global standpoint, you'll need less testing, less monitoring. It's a very good combination.

But affordability is going to be such a huge issue, particularly for people in middle-income countries, let alone people in the U.S.

Can we talk about acute hep C? We don't have fourth-generation HIV testing rolled out to help with identifying acute HIV. Can you talk about how folks typically screen for acute hep C?

I think those infections get picked up in the context of routine HIV monitoring when people have really high liver enzyme levels. A lot of savvy clinicians have said, "Hey, what's going on? Could these be an acute infection?" And word has gotten out.

That's really how they're being picked up. I don't know any other way that they are.

Is it a challenge?

It's asymptomatic. If someone's been at risk, they might have been at risk multiple times. They might not feel sick. Someone else might not share the information: "Hey, I just found out I have hep C. And we were all at the same sex party." I think it's a failure of public health that there are no messages about how it's transmitted for HIV-positive men who are having sex with men.

Any closing thoughts? Messages that you would want to give medical providers, in light of all these changes that are happening in hep C?

Get ready for two things: fighting with a lot of reimbursement systems; and the great pleasure you're going to have when you get to cure somebody in two or three months, and see them return to health.

Great. Thank you very much.

This transcript has been edited for clarity.

 

Copyright © 2014 Remedy Health Media, LLC. All rights reserved.

 

1 Comment
term paper writers link
7/29/2014 10:10:28 pm

I am sure that new ways of treating will help people a lot! This desease shouldn't be a problem

Reply

Your comment will be posted after it is approved.


Leave a Reply.

    Archives

    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    May 2013
    April 2013
    March 2013
    February 2013
    January 2013
    December 2012
    November 2012
    October 2012
    September 2012
    August 2012
    July 2012
    June 2012
    May 2012
    April 2012
    March 2012
    February 2012
    January 2012
    December 2011
    November 2011
    October 2011
    September 2011
    August 2011
    July 2011
    June 2011
    May 2011

    Categories

    All

    RSS Feed

Privacy Policy