Andrey Rylkov Foundation
for Health and Social Justice

Access to treatment of hepatitis C

Anya Sarang’s speech at a special session dedicated to the presentation of the Manifesto / Berlin Declaration within the first European Conference on Hepatitis C and Drug Use in Berlin. 

Good evening dear colleagues, I’m glad to have a chance to discuss with you such an important issue as access to hepatitis C treatment. I would like to thank my colleague Sergey Golovin from International Treatment Preparedness Coalition in Eastern Europe and Central Asia for helping me to prepare this presentation.

It is estimated that in the world there are at least 150 million people living with chronic hepatitis C. Unlike HIV, this virus could be completely cured in majority of cases, but despite this, it now kills estimated 500,000 people each year. The fight for hepatitis C treatment has been going on for over 15 years, however, the progress is too slow – as recently noted by the head of UNAIDS Michel Sidibe, “hepatitis C drugs are priced out of reach and out of control”.

My own county, Russia, provides a good example of the scale of the treatment gap: there are estimated 5 mln people living with hepatitis C, of whom at least 2 mln are in urgent need for treatment. In years from 2008 to 2013 only around 23.000 patients have received peg-interferon combinations – that is only 1% of patients in urgent need, and less than half percent of all people with hepatitis C. None of those who received treatment were drug users – as people who use drugs are excluded from treatment, in Russia and elsewhere, on the basis that the medication is too expensive to be “wasted” on someone who cannot guarantee 100% adherence.

This scenario sounds very familiar. We have heard the exact same things in the 90-s when people were denied access to HIV medications on the same very basis – drug users are “chaotic”, “undisciplined”, “criminals”, “don’t care about their health”, and “cannot adhere to treatment” and therefore they should not have access. We thought we already had this fight and won the argument in the beginning of the century. Now, fifteen years later, there is no doubt that drug users as any other groups can and will adhere to HIV treatment, if they are provided with a good care and support that meets their needs. However, now we keep hearing the same things about hepatitis C treatment. And like 15 years ago, we know that the real problem is not drug users, the real problem is greed.

The UN Secretary General’s Special Envoy on HIV/AIDS in Eastern Europe and Central Asia Michel Kazatchkine once said: “If the prices were to be unaffordable once more in history, it would be one more scandal around inequity of access to health care”. And now we are living through this very scandal, when prices of lifesaving medications are once again unaffordable. A promising new medication Sofosbuvir that recently came out to the market has already caused a scandal – just in a little over a year Sofosbuvir became famous as one of the most expensive and most profitable drugs in the world. Gilead has costed the drug at 84.000 dollars per cure. To earn this money, an average Russian citizen would have to work for 8 years and spend all the earnings on the medication. To cover universal access for people who need treatment, countries like Egypt would have to spend 11 billion dollars, which is four times the country total annual health cost. Wealthier countries like Australia, UK and France cannot afford to treat patients due to high burden on their health budget.

While Gilead provides all kinds of cost saving arguments to justify the price, we in fact know that Sofosbuvir is not an expensive or particularly complex drug to manufacture. Health economists estimate that it could be produced generically for less than US$1 per pill – a model that includes reasonable profit margin for generic drug makers. One dollar – not one thousand.

Even from commercial point of view, Gilead could have the same profits, by lowering the price and making the medication affordable to proportionately more people. Instead of this, they are segmenting the market by granting the license for generic production in low income countries, in order to keep the high price for the wealthier countries, and leave patients in middle income countries which host the world half patient population – many of them in Europe and especially Eastern Europe – without hope.

Pharmaceutical companies who produce HCV medication have historically been very successful in keeping the price despite public pressure: Roche managed to keep the price of their peg-interferon at 15 thousand dollars for 15 years. The price is slowly going down now, but the more effective combination with new protease inhibitors are still affordable to only single patients out of millions of those in need. Today, corporate greed and cynical refusal of the big pharma to decrease price despite human losses is the main barrier to access to treatments.

While fighting for dropping the prices of the medication we also have to remember another lesson we learnt from HIV – that even when prices slowly become more affordable, discrimination persists. And the first groups to be excluded from the luxury of the expensive treatment are ironically those who are most affected, but undesirable and undeserving: drug users, sex workers, migrants and prisoners. And as years ago, we have to continue to document and research best practice examples of inclusive mechanisms to ensure equitable access to treatment.

In many countries we have to keep and revitalize the fight for sustainability of harm reduction programs to ensure access to timely consultations and information on treatment options for people who are most affected by hepatitis, but who have least knowledge about possibilities.

A couple of years ago we did a study to explore the HCV treatment gap. We talked to patients in three cities – most of them were drug users. Not only didn’t they have access to treatment, they didn’t even know it existed. For them, hepatitis treatment meant hepatoprotectors, some herbal medicine, some charlatan treatments, and not very cheap ones either. They did not know that antiviral medications even existed. In most cases, when people found out their tests results the doctors did not even mention treatments, as they knew this option was not available. It is our role as harm reduction advocates to run effective information campaigns. Treatment awareness should not be the privilege of those with access to internet or support resources – it should be raised in all patients living with hepatitis.

When a patient is well informed and knows what he or she wants, they can fight. Just recently a friend of mine, a former outreach worker, has been enrolled into combination treatment with Telaprevir – which is also generally unaffordable in Russia. Our friend was ready to go to the court to fight for this improved regimen and discussed it with his doctors – just a couple months later he was offered to be enrolled in the state funded program which only included 15 or 20 people. He is very glad about that now, and tells people that miracles happen, but this miracle would not have happened if he wasn’t well informed.

Another victory in a patients’ fight – a story of our organization staff member Maxim Malyshev who went to court to fight for free of charge diagnostics: PCR and genotyping are also too expensive and patients often have to pay for them out of the pockets. He won the court in his Oblast two years ago and since then the diagnostics became available free of charge to all HCV patients in that Oblast, the court obliged local health authorities to cover the price.

Another amazing example is a recent victory of Jose Manuel from Spain a patient with hepatitis C who launched a campaign asking the Ministry of Health to cover Sofosbuvir by public funding and achieved the success.

These are some inspiring stories, but I emphasize again that key to my friends successes was knowledge of the treatment options and of their rights as patients.

Our organization is named after Andrey Rylkov who was one of the brave people who started FrontAIDS movement in Russia, and fought for access to HIV antiretroviral treatment at the time when it was accessible only to a few privileged and ‘socially reliable’ patients. Just last week we celebrated 10 years since the first action of FrontAIDS in Kaliningrad – and ironically, we celebrated it with a new patients protest in the same city – this time, against HIV treatment interruptions. The fight for affordable treatment continues, although the HIV medications are more available, they are still expensive, drug users are still discriminated, adherence support systems are lacking and procurement systems are instable. The struggle for HIV treatment is far from being won, but at least we have learnt many lessons that we can apply in the new front. Fight corporate greed, explore and utilize price reduction mechanisms, inform the communities, and build up activism and legal fight for access to treatment and against discrimination. While infectious diseases are slowly fading away from the agenda of international organizations, we should not let it happen and we have to find new strength to make hepatitis C treatment available to all who need it.

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