Neglect of Hepatitis C leaves people with HIV vulnerable

In communities where sharing of injection equipment drives the HIV epidemic, a parallel epidemic often lurks quietly in the shadows. Greater awareness about hepatitis C, more investment of resources, cheaper diagnostic and treatment services, and improved hepatitis-related treatment literacy, are all urgently needed by people co-infected with the hepatitis C virus and HIV.

"Hepatitis C treatment is mostly left out since AIDS activists are so focused on ARVs [antiretroviral drugs] or other prevention and treatment services," said Umesh Sharma, who has just completed a course of hepatitis C treatment.

Hepatitis C is a blood-borne, infectious, viral disease that is caused by the hepatitis C virus (HCV). The infection can cause liver inflammation that is often asymptomatic, but chronic hepatitis can lead to cirrhosis and liver cancer. HCV transmission occurs when traces of blood from an infected person enter the body of a HCV-negative person. Like HIV, HCV is spread through sharing injection equipment, through needle stick or other sharps injuries, or less frequently from infected mothers to their babies.

HCV transmission rates are higher than that of HIV, and the condition is often more severe in drug users. People who share injection equipment are vulnerable to HCV and HIV infection, and in many places co-infection is not common.

For Umesh the key was largely having access to the information he needed. Already aware of his positive HIV status, he went for a routine general health check-up during a trip to Manchester in 1995. He discovered he was also infected with HCV. Until then he had no symptoms of HCV. This is not an unusual story, up to 80% of people with HCV usually develop no symptoms. Initial symptoms, when they appear, can include jaundice, fatigue, dark urine, abdominal pain, loss of appetite and nausea.

There are three types of tests for HCV, which all use polymerase chain reaction (PCR) technology:

    * HCV PCR viral detection test: This qualitative test is designed to detect the hepatitis C virus.
    * HCV PCR viral load test: This quantitative test estimates the level of HCV in the blood. It helps to monitor the effectiveness of treatment.
    * HCV PCR genotype test: This determines the specific genotype (genetic 'make-up') and subtype of HCV. This information is important in selecting a course of treatment. For example, treatment with interferon is more often effective for people with HCV genotype 2 or 3.

"The cost of these PCR tests is prohibitive", says Umesh. He had to pay close to US$100 for the tests.

People co-infected with HCV and HIV also need to monitor indicators of HIV progression, such as their CD4 count. If the CD4 count falls below 200, then HCV treatment is less effective, and its side-effects may be more pronounced. Umesh suggests that those people with HIV who are taking antiretroviral (ARV) drugs should consult their doctors to find out if they need to change their ARV combination before starting HCV treatment.

Another challenge is the limited availability of PCR tests. In India for example, the test is available in only one city (Mumbai), although blood samples are collected from other parts of the country and sent there for diagnosis. The results can take more than a month to be returned.

Over ten years after his initial diagnosis, Umesh has just completed a course of hepatitis treatment, but getting through the treatment was not without its challenges. "We clearly need more HCV diagnostic facilities", added Umesh. "Particularly in areas with high levels of injection drug use."

HCV can often be treated successfully, including among PLHIV, but the treatment is not easy to endure. Treatment for HCV uses a single drug, or a combination of two drugs, and usually takes between six and twelve months. Umesh points out that there is no standardized treatment protocol and clinical practice varies considerably between individual doctors. This can add to uncertainty and confusion for patients.

The treatment for HCV is also very expensive - costing on average approximately US$250 per week. Interferon injections are given weekly, in addition to ribavirin tablets. The tablets may be provided free for people paying for interferon injections. On purchasing four interferon injections, one extra is often provided free as a 'discount'. But in countries such as India, people have to bargain with representatives of pharmaceutical companies or doctors, remarks Umesh. A cheaper alternative is to use interferon injections alone, although this is reported to be less effective. Umesh comments that high-profile donor agencies including the Clinton Foundation and the Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) are yet to dedicate resources to providing treatment for HCV.

Another dispute among clinicians surrounds the diagnostic value of a liver biopsy. In well-resourced countries, a liver biopsy is usually performed to determine the extent of hepatitis-related liver damage, whereas in Asian countries such as India, China, Vietnam, and Thailand, doctors usually avoid this procedure. Consensus is needed around the diagnostic utility of liver biopsy, if nothing else in order to eliminate additional confusion for patients.

There is no vaccine to prevent HCV infection and even after successful completion of treatment, HCV reinfection can occur. During and after treatment, HCV PCR viral load testing is done at six month intervals to monitor HCV control.

Umesh says that people with HCV considering treatment should connect with those who have previously been through it. The initial days of the regime can be very frustrating and challenging, including loss-of-appetite and flu-like symptoms - it helps to talk to those who have completed the regimen before. Even after successful completion of HCV treatment, it is vital to keep the HCV viral load low. Umesh recommends that drug and alcohol use should be avoided in order to protect liver functions. Also people with HCV need to take care of their livers by avoiding spicy or fatty foods.

Umesh recalls, "I learnt from my doctor, Dr Samiran Panda, in the early 1990s, who taught me how to take care of myself and monitor my own health."

Umesh has proactively sought information over the years, in order to look after his own well-being as well as possible. As a result, he has developed a comprehensive understanding of issues around HIV, injection drug use, as well as HCV.

Developing these kinds of self-management abilities is vital: To monitor and control symptoms of hepatitis C, to minimise other complications or opportunistic infections, or hopefully to prevent their onset entirely.

For people co-infected with HCV and HIV, self-management and treatment literacy skills may be all the more crucial.

Bobby Ramakant-CNS