This Month in HIV: Update on Hepatitis C/HIV Coinfection
Hi. This is Terri Wilder with The Body. Today I am talking with Tracy Swan. She's the coinfection project director at Treatment Action Group. She's been working in HIV since 1990, and has done work in hepatitis since 1998. So, welcome, Tracy.
Thank you, Terri.
I just want to start by having you tell our listeners and our readers exactly what you do at Treatment Action Group.
I work to promote better policy for access to hepatitis C treatment, and better research with the pharmaceutical industry, the government, and most importantly, other community members, and researchers, policymakers, and clinicians.
What are some of the issues around the medications particularly in hepatitis C, that you are working on around advocacy issues? My guess would be -- and you can correct me if I'm wrong -- maybe trying to find a medication that's not as challenging on the body.
Certainly, the current standard of care, pegylated interferon [brand name: Pegasys, PEG-Intron] and ribavirin [brand name: Copegus, Rebetol], has profound limitations, both in the ability to tolerate it because there are so many side effects, and that it's not nearly as effective as it could be. So, the first issue is: Can people who need to be treated even get access to the current standard of care?
When you say have access, you mean do they have the resources to even pay for it? Or that their clinic or the area they live in may not even be able to get it?
Both. Do they have the resources to pay for it? Do they have access to specialty care, or a doctor that's knowledgeable about hepatitis? And also, will the doctor be willing to treat them? Because even though the United States guidelines now specify that treatment decisions for people who are actively using drugs should be made on a case-by-case basis, between each person and his or her doctor, a lot of doctors simply won't treat people who are using drugs, and they are the largest prevalent population of people living with hepatitis C.
The other part of my question was about reimbursement for this medication. I understand that it's pretty expensive. I also understand that, for example, if you don't have insurance, or Medicaid, or Medicare, things like ADAP [AIDS Drug Assistance Program] don't necessarily always pay for the hepatitis C medication for the person who's living with HIV and hepatitis C. I'm wondering if you could make some comments about that, and if you do think that that is something that is needed, or that people should advocate for.
It's a complicated issue. Definitely, not every state ADAP program covers hepatitis C treatment. But it's not because of an unwillingness on the part of the programs; it's simply that they are really underfunded. The really big picture issue is that ADAP needs to be fully funded, because we still have people on waiting lists who are dying before they gain access to antivirals and that should not be happening. Everybody who needs HIV treatment in this country should be able to gain access to it -- the same thing with hepatitis C treatment.
The problem is, it's not just the HCV [hepatitis C virus] treatment that's quite expensive. White and red blood cell growth factors that are used to manage certain side effects, such as anemia and neutropenia (low white blood cells that fight bacterial infections) are also extremely expensive. [In addition,] a lot of people are not able to take months and months off of work, or to cut back work to part time, so even if they can manage to patch together coverage, it's simply not an option, because they have too many side effects to be able to go to work while they are on treatment. So that's another added cost.
The two companies that make pegylated interferon, Roche and Schering[-Plough], do have patient assistance programs. [For phone numbers, see our resource section.] But that's a really inadequate safety net, instead of having a health care system that takes care of the needs of our citizens.
You mentioned that there are some ADAP programs that do cover the hepatitis C treatment. Do you know offhand what states those reside in?
I can find out for you, because I just did a grid, and it's on TAG [Treatment Action Group]'s Web site.
What is your Web site?
So that would be something that our readers and listeners could actually go to and find out material, as well.
Yes. And also, NASTAD, which is the National Alliance of State and Territorial AIDS Directors, in conjunction with Kaiser Foundation, does a report on the formularies of every state ADAP program each year. That's where I got this information. It's from their project, which is extremely helpful, and I just want to make sure that their work gets recognized.
Talk to me about what you think are maybe the top three kinds of pertinent advocacy issues related to HIV/hepatitis C coinfection. What are the really pressing issues that you really feel people need to pay attention to?
Well, in the biggest picture, there are a lot of new HCV therapies in the pipeline. I think we're at a very interesting time in hepatitis C treatment, where it's not just going to be whether a drug is approved or not, but what is the best, most strategic way to use that drug, so that maybe the course of treatment could be shortened, or treatment could be more effective, or both. It looks that interferon and ribavirin are going to be a mainstay of hepatitis C treatment for years to come. But it might be much easier for people if they knew it was a much shorter course, or that they had a 95 percent chance of clearing the virus after their treatment.
It's like the pre-HAART era in HIV, where we have something that we know can sort of do the job -- not so well for coinfected people, in particular -- but that we just need better therapies for coinfected people, for people with HCV alone, for African Americans -- in whom hepatitis C treatment is less effective -- for transplant candidates and recipients, and people with advanced liver damage. We also need really good structures to deliver the care and treatment.
You mentioned the African-American community. Are you saying that race may play a factor in treatment success?
It definitely does. It's known to be associated with treatment success. For some reason, or reasons, hepatitis C treatment is less effective for African Americans than Caucasians.
There's no explanation as to why that may be?
There are many. It may not just be one simple thing. But the NIH [National Institutes of Health] is currently supporting a study called ViraHep-C to look into this and see if they can determine the cause, and therefore -- hopefully -- learn how to increase treatment effectiveness.
Are there any preliminary ideas as to maybe why that may happen?
I know the one thing that's pretty well established is African Americans are less likely to clear hepatitis C when they are first infected than Caucasians. No one is sure why there may be a difference in immune response. I wish that there was an established body of knowledge so that the problem could be addressed. Because hepatitis C is more prevalent among African Americans than white people, or Caucasians, in this country.
I have another question about a population that's affected, and that's in women. I'm wondering if there's any information about the response to treatment in women that are coinfected with HIV. The reason why I ask this is because it seemed, at least in the HIV community, it took a while to realize that women's bodies are different from men's bodies, as it relates to the antiretroviral medication, or even the progression of the illness in women's bodies. I'm wondering if there is anything like that for women who are coinfected with hepatitis C.
Unfortunately, I don't think enrollment in clinical trials of women has been large enough to sort of break things out and say women are doing better, or not as well. So it's really hard to say what the differences are, which is the classic problem in HIV, also. You can't make a conclusion about something if you don't have enough people in the studies. There are some data in hepatitis C monoinfection to suggest that women don't progress as rapidly, but that's not always true in coinfection.
What would be a women's issue around coinfection? I am thinking about women who may be interested in getting pregnant and having children, and they are coinfected. Are there any special issues around that that maybe our listeners or readers may need to be aware of, if they are thinking about having children?
Definitely. Because with HIV, people can use antiretrovirals to decrease the risk of having an HIV-positive baby. With hepatitis C, ribavirin causes severe birth defects, so it can't be used during pregnancy. So there's no way to continue treatment as a preventive measure. It does seem that treating the HIV may decrease the likelihood that the baby will be born with hepatitis C, as well as HIV. Although it's not currently recommended for women with hepatitis C alone, planned C-section is recommended to reduce the risk of mother-to-infant HIV transmission among coinfected women. What would be really helpful for women is to get screened for hepatitis C as part of prenatal care, so at least a woman can go into it [her pregnancy] with that information. I don't think that this always happens.
The recommendation is that all HIV-positive people should be tested for hepatitis C. But a lot of times, that means people get tested once as part of an intake into care, and even though they may be at ongoing risk, they are not tested annually, or [tested] according to risk or exposure. Or doctors may not be asking people. So it's possible that women might not know their hepatitis C status. Although, if they are HIV positive, it's probably more likely that they would.
I have another question about liver transplant access. I spoke with a woman the other day who is actually on the transplant waiting list. I know, at one point several years ago, there was what seemed like resistance to people who were coinfected being able to even have access to a liver transplant.
That was really an HIV-specific issue, in general. Because the real problem is, there's an organ shortage, and people weren't necessarily aware of how much the prognosis for HIV has changed since the advent of highly active antiretroviral therapy [HAART]. People had concerns about giving HIV-positive patients immunosuppressive drugs after transplants.
But now there is the huge survival benefit of antiretroviral therapy. It has really been characterized. That's no longer a reason to withhold transplantation. So the NIH is sponsoring a study -- the National Institutes of Health -- kidney and liver transplantation in people with HIV. And I think that's really helpful, because it will also answer, or at least define, a lot more important questions, and help to clarify what the standard of care is for a coinfected transplant candidate or recipient.
One of the biggest problems is that the hepatitis C almost always comes back. You may be getting a new liver, but the virus is still in a person's blood. So managing antiretroviral drugs and immunosuppressants, where there can be drug-drug interactions, plus hepatitis C treatment, can be really, really complicated.
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This article was provided by TheBody. It is a part of the publication This Month in HIV.
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