Clinical perspective: battling hepatitis C in our HIV-infected patients.
I started to talk to my patients and colleagues about the situation. To my surprise, many patients had no idea they were carrying HCV. Medical providers were not routinely testing for HCV or sometimes not even discussing this diagnosis with patients when they were infected. In addition, most of the HIV-positive patients who knew they were also positive for HCV were unaware of the potentially fatal aspect of this infection, and some of them realized they had a serious disease only after experiencing symptoms of decompensated liver disease. Looking back, there were many reasons why we were not aggressive in pursuing the diagnosis and treatment of HCV or discussing it with patients. One of the main issues was the providers' belief that an expensive, difficult to tolerate, and relatively ineffective treatment for HCV probably should not be offered to HIV-positive patients. I agreed that there was not enough data supporting treatment HCV in co-infected patients. However, I was uncomfortable with this pessimistic and paternalistic approach. I was unable to sit back and do nothing for these patients.
My first challenge was to let patients know that they were inflected with HCV. There were many types of emotional reactions, in particular disappointment: "'After all this, I have another virus." I understood their fears. They had worked so hard to manage their HIV and now they had to deal with another illness, one that was potentially more deadly. Other patients were more optimistic: "We've tackled one virus; we can tackle this other one too." Some of them did not understand the nature of HCV disease or were perhaps just more resilient: "you take care of that 'doc;' I'll do whatever you think is best." Regardless the reaction, I felt that for most people it was better that they knew about their hepatitis C infection. I wanted them to know everything so they could make informed decisions. Nonetheless, it is also true that some research shows that just knowing you have HCV can decrease a person's quality of life and may be associated with fatigue. (1)
The next challenge was to find out how much damage the liver had already sustained by assessing the degree of fibrosis. Often it was a relief to find out. I assured many patients with no or minimal fibrosis that we could wait to treat their HCV; they were not in any immediate danger. (2) For other people, finding out that their livers were being irreversibly scarred helped them stop using alcohol.
Unfortunately, it wasn't that easy for many patients. Not every story was a success. One of my patients with depression and anxiety became very upset after learning of his liver biopsy results. I couldn't treat him, and he had advanced liver fibrosis. Even so, in general, nay patients have been very thankful to know where they stand, and it has always been their choice to find out.
It took us 3 years to start our HIV/HCV co-infection clinic. But even before that, we started treating HCV. We were somewhat prepared: we had knowledge, will, and courage, but maybe not enough resources. Treatment was tough, difficult to tolerate, time consuming, and resource intense--with a relatively small chance of virologic response. Also, we were familiar with some data suggesting a histologic benefit could be obtained even in patients with transient or non-virologic response to HCV treatment. So we became selective, careful but very proactive, about choosing whom to treat. Our aim was to offer treatment mainly to patients with stage 2 to stage 4 fibrosis. And, we did not expect to clear the virus more than 40% of the time. Instead, our main goal was to delay or reverse fibrosis in these patients. Nevertheless, we had several virologic successes where patients cleared the virus. Every time it happened, I considered it a blessing, an extra "bonus."
Treating our patients has been very challenging and complex. We were fortunate to have a pharmacist, a nutritionist, case managers, and a mental health specialist on-site. All of them are necessary to treat HCV in co-infected patients. Above all, we have wanted to provide all of our patients with all the available choices and to keep them abreast of their liver disease. In my opinion, most circumstances require us to know a patient's liver histology before starting or delaying a potentially toxic and very expensive treatment. Liver histology is the "CD4 T cell count of hepatitis C" and it has been shown to improve with treatment. Of course, therapy goals should be individualized to each patient. The way we treat HCV will undoubtedly change in the next several years. New drugs that are easier to tolerate and more effective will change the way we approach this disease.
Unfortunately, there will not be enough time for some of our patients. Their livers cannot wait another 3 to 4 years. I realized that several of my patients' livers were succumbing to HCV, and those patients died soon after. Liver transplantation is the only option, and I refer such patients to transplant centers. So far, no one in our practice has received a liver transplant. Three of my patients on the waiting list have died or will die soon. Maybe the criteria for liver transplantation ought to be different in co-infected subjects? Alter long discussions with surgical and hepatological colleagues at my university, we have decided to start transplanting livers in HIV-positive patients with HCV. We will encounter new challenges but we are ready to face them. I guess we will never stop trying. We should not rest until we do a better job saving people's lives--the lives of people whom we've taken care of for years and who have become special to us.
(1.) Tadros C, Bini EJ. HCV viremia and patient knowledge of HCV infection are both important determinants of fatigue in patients with hepatitis C virus infection. Program and abstracts of the 55th Annual Meeting of the American Association for the Study of Liver Diseases, October 29-November 2, 2004; Boston. Abstract 1182.
(2.) National Institutes of Health Consensus Development Conference Statement. Management of Hepatitis C: 2002. June 10-12, 2002.
Daniel Alvarez, MD, is Assistant Professor of Medicine and Director of Antiviral Research, Division of HIV/AIDS Medicine at Drexel University College of Medicine in Philadelphia. He also treats patients at the Partnership Comprehensive Care Practice.
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|Publication:||Research Initiative/Treatment Action!|
|Date:||Sep 22, 2004|
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