Hepatitis C is not only a health issue. Without addressing the social exclusion of Roma people, repressive drug policies and the attacks against NGOs, there is no way to end the epidemic. Lessons learnt from Hungary.
The Rights Reporter Foundation organised a panel discussion on hepatitis C in Budapest on the 2nd of October. We invited activists and professionals, including Dr. Tamás Tóth, a hepatologist from the Semmelweiss University, Tamás Berecky, an activist working for the European AIDS Treatment Group, Virág Kováts, a social worker from the harm reduction NGO Altalap and Nagyné Antal Tünde from VIMOR, the Hungarian Association of Chronic Liver Patients. Before the discussion we screened our movie “The Time Is Now to Eliminate Hepatitis C” (embedded in the end of the article), produced in cooperation with the Correlation Network, filmed at the Hepatitis Community Forum in Amsterdam. The movie provided an international context by highlighting the momentum to end the epidemic with the help of highly effective new medications (read our earlier article!).
THE HEPATITIS C OUTBREAK IN HUNGARY
The discussion aimed to identify the major barriers and challenges to ending hepatitis C in Hungary, where the epidemic has been rapidly growing among injecting drug users due to an increase in stimulant injection and the lack of adequate access to harm reduction services. Between 2011 and 2014, the prevalence of hepatitis C among injecting drug users increased from 24% to almost 50%. In the same period, the two largest needle and syringe programs were shut down and the number of distributed needles and syringes decreased from approximately 650,000 needles per year to just 150,000 needles per year. We can state in no uncertain terms that the anti-harm reduction and anti-NGO turn of the Hungarian government resulted in thousands of new hepatitis infections.
POOR ACCESS TO NEW MEDICATIONS
With the advent of direct-acting antivirals (DAAs) we can now massively reduce the harm from hepatitis C. Interferon-free DAA regimes are short, highly tolerable, and simple to deliver, with cure rates of over 90%. However, the price of these drugs is still prohibitively expensive and this prevents large groups of society from accessing them. The Hungarian government did not challenge the patent of the drug. They created a central registry for hepatitis C patients (HepReg), with a risk score calculator of patients registered with hepatitis C. There are long waiting lists and only those with severe liver damage can access the new treatment. Tamas Berecky, who was living with hepatitis C himself, described his own struggle through the maze of this system (read his brilliant article here!). He realised that he wouldn’t be able to receive DAAs before his liver became damaged so he explored the alternatives. He found out about drug tourism in India, where cheap, generic hepatitis drugs are available. Some Hungarian hepatologists even teamed up with tourist agencies to organise the patients’ trips to the country. However, he also realised that it is legal to order this medication online. He took the pills and was cured. Now he is helping his peers to do the same.
POOR ACCESS TO TESTING AMONG DRUG USERS
Testing sounds easy – but for marginalised people, such as the majority of people who use drugs and are living with the virus, it is not feasible. First of all, they do not even have access to voluntary testing and counselling services. They could previously be reached through harm reduction services, but these services are now in decline and often lack the resources to buy HCV testing kits. Even if they access tests, they will not receive treatment. Dr. Tamás Tóth estimated the total number of people living with hepatitis C at 50,000, from these 20,000 were tested positive, 10,000 received some kind of treatment and 6,000 were cured. Although the vast majority of people who test positive for hepatitis C are now people use drugs, only a small proportion of them get treatment. They often don’t have health insurance, a registered place of residence, and/or identity cards. They are invisible to the public health system.
THOSE WHO ARE MOST IN NEED ARE NOT TESTED
According to all international recommendations governments must focus resources on the testing of those who are the most vulnerable, that is, people who inject drugs. However, the Hungarian government is ignoring these recommendations. It allocated 6 billion Forints on combating hepatitis C. This is a fair amount, according to Dr. Tamás Tóth it would be enough to treat each and every person living with hepatitis C in two years, so long as it is spent on testing and treating the most vulnerable. But the government spends this money on testing campaigns among less vulnerable groups, such as health workers. Last year for example, each and every worker of the Honvéd Hospital were tested for HCV. From 2000 health workers only 2 tested positive, and one of those had known his status for years. This is a frustrating example of how much-needed resources are wasted in vain. And according to Dr. Tóth the government is planning to spend 600 million HUF next year to test health professionals. At the same time harm reduction NGOs cannot even afford to buy HCV tests, not to mention needles and syringes. And even if they do, their work is often blocked by overzealous police officers.
SERIOUS RISKS IN PRISONS
Dr. Tamás Tóth reported about the HCV testing project they conducted with the support of a pharmaceutical company in the correctional system. They tested prisoners in the Állampuszta Penitentiary Institution, where they found that the prevalence of hepatitis C was ten times higher than among the general population. Those who tested positive were mostly young Roma males, living in deep poverty and with prior experiences of drug injection. Those people who were treated whilst in prison were cured, but those who left without treatment were lost from the treatment system. There is no connection to community services who could have channeled these people to the public health care system. He emphasised that hepatologiss are only part of the equation. It is not possible to scale up access to HCV treatment without investing in social support and harm reduction programs.
NO COORDINATION – NO STRATEGY
One of the recurring themes of the discussion was the lack of coordination among different actors; connections are missing between social and health care. Only a few hepatologists treat drug users, one of whom is Dr. Olga Szabó at the addiction treatment department of the Nyírő Gyula Hospital. The Ministry of Human Resources fails to show leadership. The government created a climate of fear and suspicion towards NGOs, which are scapegoated and demonised. Government institutions that were responsible for making public policies, such as the National Centre of Epidemiology, the National Drug Prevention Institute or the National Drug Focal Point were abolished and/or merged with the Ministry, where they work under direct political control.
TO END HEPATITIS C IS NOT ONLY A PUBLIC HEALTH ISSUE
To end the hepatitis C epidemic is not only a public health challenge, it cannot be abstracted from the wider social and political context. Most new infections are registered among marginalised groups in society, especially people who inject drugs. Official reports rarely emphasise that in our region, Central and South-Eastern Europe, most of these people are Roma, who suffer from multiple forms of systemic discrimination and social exclusion. The same governments that allocate resources on fighting hepatitis C are reluctant to address underlying social inequalities, poverty, homelessness, unemployment, and segregation as the root causes of both growing drug problems and infections. What is more, local and national governments often promote policies based on discrimination, criminalisation, and segregation. Austerity measures cutting back health and social care budgets, and punitive criminal policies targeting poor communities, are major barriers to accessing hepatitis C prevention and treatment services. Governments must use their legal powers to force the prices of drugs lower. There is a need for more synergy among public health professionals, harm reduction organisations, law enforcement officials, and organisations supporting marginalised Roma people. The most affected communities should be involved in designing services and making policies. International organisations must support the building of these coalitions that can promote alternative policies based on integration and inclusion.