Access to Hep-C treatment – Will it become a reality?

By Rajesh Khongbantabam *

It was more than a decade ago, since the region was brimming with activities. National AIDS control programmes were maturing, many innovative projects were under way and some remarkable success stories were beginning to capture world attention. Moreover, all the concerned were focusing almost exclusively on the happenings and matters related with HIV/AIDS. Soon after, newer challenges demanded attention with other co-infection getting more and more menacingly tied up with AIDS. The first year of the new millennium is indeed proving to be a turning point as far as access to treatment for people living with HIV/AIDS is concerned. But for a small state like Manipur, with the highest concentration of HIV/AIDS and along with HCV co-infections, many have been busy over the past talking with people and figuring out how this resource scarce state is going to deal with a growing Hep-C epidemic of co-infection. Just as is the case with the state AIDS policy, there has had to be a process of developing a Hep-C policy to create a momentum, with more than 90% of the HIV infected male IDUs being co-infected with HCV in Manipur.

Even if ARV therapy is available and accessible, still there is a higher risk of dying of HCV then of AIDS or related opportunistic infections. Before I get into where we are going in the state in addressing HCV, I would like to give a snapshot of where HCV fits into the Manipur context.

• Manipur has a population approximately 2.4 million people as per 2001 census.
• It is estimated that there are 50,000 people using drugs inclusive of nearly 35,000 of IDUs as per UNODC India country profile.
• It is estimated that there are more than 28,000 people living with HIV/AIDS in Manipur (epidemiological report provided by the state nodal agency for HIV/AIDS programming) but the UNAIDS have suggested in 1995 that at least 40,000 people would have been infected. A serious implication, that the official data could be just the tip of an iceberg.
• There is a statewide needle exchange program, whose fate is uncertain.
• There is a particular prison where a large numbers of drug users are being incarcerated on grounds of drug dealing; as such, there is no provision for harm reduction in custodial setting.
• There are many organizations, workers whose role includes services relevant to HIV/AIDS but I am yet to witness a one whose fulltime work relates to HCV at present
• There is no credible study to back up any data. From interactions with people living with HIV/AIDS, it was found that HCV and HBV were evaluated among 77 Manipuri’s couple whose spouses were both IDUs living with HIV. Thus, a hypothetical assumption shows a high prevalence of HCV (92%) and HBV (100%) co infection amongst the IDUs in Manipur. However, by the time this article is written, a qualitative & quantitative research/study is being undertaken by PHI with support from CRS-CDC.
• There are no hepatologist in Manipur.
• A qualitative and quantitative testing mandatory for initiating HCV treatment cost more than 10.000/- INR.The bills for treatment of HCV run up to 5-6 lacs of rupees.
• An innovative treatment venture based on the lines of AMWAY policy, initiated by a renowned HIV/AIDS physician failed to take off.

So, What about HCV?
Time will only tell this pervading question being raised when for the first time, probably in history, the mass rally on the 20th may, 2007 turns out to be a grassroots movement for mobilizing support for HCV treatment, which was supposed to be a candle light memorial for AIDS victim. Thousands of people concerned with this issue took to the street with a new war cry "HCV – treat now", "Are you listening, Indian government?" Leading at the forefront were some of the prominent activist such as Shibananda (regional coordinator, APN plus), Loon gangte (DNP plus), Gopen mosses (UNAIDS), L.Deepak (MNP plus). With the number of PLHAs falling like a ninepin balls, to HCV, it was the right time to show solidarity and raised our concerns to the next level. The most heartening for the HCV affected people as also all those involved in the battle against HCV, was the solidarity, support and backing, which came from a cross section of people with the active support given by the governor of the state himself. Positives outcome were the "Imphal Declaration". It was nothing but a reaffirmation of the fact that HIV/AIDS and HCV had finally moved out of the confines of the health sector and was now the prime focus of governments, funding agencies, organizations and the media who acknowledged the threat that an unchecked pandemic could cause to this small state and to humankind. There is one way to know if a struggle is bringing positive results - When it is suddenly time to change direction or to enlarge its bounds. Nevertheless, it shows clearly that it may become increasingly less practical to maintain a distinction between HCV issues in particular and HIV/AIDS in general. What more opportune then these events to mobilize grassroots support demanding policies that promote access and confront governmental policy makers, the pharmaceutical industry and multinational companies when their policies or practices block access.

It is our firm belief that only a Human Rights to life and to Health must prevail over the pharmaceutical industry’s excessive profits and expanding patent rights to turn this crucial accessibility, including affordability. A most significant issue will be to consider how the developments and experiences in improving access to ARV drugs could be used on a broader perspective for enhancing access to all life-saving drugs, particularly for HIV- associated co-infections like Hepatitis. There are many people living with the virus whose quality of life would be greatly improved if early and adequate treatment were made available for such co-infection. Perhaps a new shift of paradigm in fundamental thinking in accessing this life saving medication could be replicated from the experience of universal access to ARV drugs. - "From disputes before the WTO, to court cases in South Africa, Debates in relation to essential medicines being resolved in favor of lowering trade barriers to access. The pharmaceutical industry has begun to accept the principle of broad application of differential pricing for AIDS drugs, based on country needs and ability to pay, and implying that prices offered to poor countries fell dramatically. Generic versions of many anti-retroviral drugs now exist. While there is a need to mobilize additional resources for drugs, the broader issues of generic or local manufacture and compulsory licensing within TRIPS – Trade Related Aspects of Intellectual property rights – still needs and must be considered. Provisions made under TRIPS allow signatory states in the event of national emergencies, such as the HIV/AIDS epidemic, to pass national laws enabling them to produce locally or import cheaper versions of an internationally patented drug". when, such dramatic offer made by pharmaceutical companies could brought home for the first time the realization that wider access to HIV drugs could possibly become a reality, even for people living in a poor country like India. Then why not for HCV drugs and what about HCV?

Issues beyond drugs
Efforts to tackle this epidemic of HCV co infection could be complicated by the fact that few collect information or lack of study/research about the HCV related needs and requirement with regard to treatment. An important part of a response, even before prevention or care and treatment programming is planned, is the collection of information. After identifying the present condition/scenario in the area, the researchers will be able to pinpoint opportunities to tailor intervention or treatment method. Action research needed-Research is needed to anchor an effective overall response to HCV. Rigorous analysis of basic, clinical, epidemiological and socio-behavioral research results could be used to guide the implementation of treatment and care programming. It is worth mentioning that an assessment under the title "Assessment of differential of HIV-HCV and HIV mono infection among injecting drug users (IDUs) who are on ART in northeast, INDIA 2007-09" is being initiated by Population Health Institute (PHI), imphal with support from CRS, CDC and three SACS of Manipur, Nagaland and Mizoram. The assessment will be conducted in three phases of which one will be on socio-economic profiling of the study sample. The second part will be on clinical profiling between PLHIV co infected with HCV and those who are mono HIV infectious. Third part will be to study the service provision as well as policies. To fulfill ethical guidelines of ICMR, the assessment will be providing free HCV treatment to seven volunteers who will be clinically selected from the study sample. This study could be a backbone for future framing of Policy or programming. Are we seeing some light at the end of the tunnel?

There is no blue print for bringing the epidemic of HCV under control. However, the past 20 years have seen the development of tools and knowledge that we know can result in success. The world now has a road map for the fight against AIDS but there is a time bomb ticking back with urgency for drug access and the resources necessary to sustain access for people co-infected with HIV and HCV across this ruined small state called Manipur. Time will only tell...

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* Rajesh khongbantabam is a key correspondent of HDN and writes about AIDS inflicted and help available for them. He is based at Imphal.
You can read this writer's self profile here. This article was webcasted at e-pao.net on 30th March 2009.

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