On July 26th, 2013, 126 representatives from 10 civil society groups visited Thailand’s National Health Security Office (NHSO), which oversees the universal healthcare scheme, in recognition of World Hepatitis Day.
Acknowledging the government’s positive steps taken to increase access to HCV treatment in the face of significant barriers, through their successful action in negotiating a lower price of treatment and by putting PEG-IFN on its EDL (Oct. ’12) but in light of the fact that testing and monitoring is still not covered by the healthcare scheme, and that treatment is currently limited to genotypes 2/3 in mono-infected people and approved only for 24 weeks (and not in HIV+), the civil society advocates presented a set of recommendations, which included:
1. NHSO should cover comprehensive screening and testing for risk groups and people on treatment
2. Collect relevant epidemiological data on HCV in PLWHA and PWID at national level.
3. Move PEG-IFN to main Essential Drugs List (from auxilliary) in order to reduce barriers and increase access.
4. Expand eligibility criteria for treatment consideration and access to PLWHA and PWID and for the duration medically necessary
5. Work with relevant stakeholders to develop medical provider capacity to treat HCV, and develop national HCV (and coinfection) treatment guidelines
in Thai that are in accordance with int’l. standards.
6. Support civil society to continue to play an essential role in peer education and advocacy activities for HCV prevention, treatment, etc., in particular in communities at high risk/prevalence, such as PWID, MSM, PLWHA
7.Expand treatment access to areas around the country with the capacity to treat.
Responses from the government will be shared.
Signatories to the letter to NHSO were:
Mitraphap House, On Nut (BKK) Dop-in Center (DIC), Pak Nam Samut Prakhan DIC, Raks Thai Foundation, Mitsampan Harm Reduction Center, Ozone-Prachacheun DIC, Thai Drug User’s Network (TDN), Thai Network of PLWHA (TNP+), Hep C/HIV Working Group, NE Thailand, Hep C/HIV Working Group, Upper North Thailand, Thai AIDS Treatment Action Group (TTAG)
Find the press release in thai here
New York, USA
On eve of World hepatitis day, New Yorkers with hepatitis C and alliers block traffic and occupy lobby of World Health Organization (WHO) demanding leadership to end the epidemic.
People with hepatitis C and allies protested outside of the World Health Organization’s NYC office today to draw attention to the international health agency’s failure to address the global hepatitis C epidemic. The activists, many of who are living with hepatitis C, blocked traffic on Second Avenue at 47th Street after occupying the lobby of WHO’s office building. They also held hundreds of balloons that said “Hep C Time Bomb” and a banner outlining their demands.
We have the tools to end the hepatitis C epidemic, but Dr. Chan can’t summon the political will to take this epidemic seriously,” said Levele Pointer, a VOCAL-NY Users Union member from the Bronx. “With a range of diagnostic options, proven hepatitis C prevention strategies like methadone and syringe exchange, and medication in the pipeline that may cure 100% of people with hepatitis C, there is zero excuse for inaction from WHO.
Eastern Europe and Central Asia
The pricing policy of Roche and Merck: a nail in the Region’s liver! Millions will die!
On the eve of World Hepatitis Day, in the region of Eastern Europe and Central Asia, patients, organisations and individuals who are currently concerned about the fate of people living with hepatitis united.
All of us came together because of one problem – the enormous prices that the pharmaceutical companies Roche and Merck charge for treatment, thereby making it impossible for us to afford this treatment!
Millions of people in the EECA region are not able to access treatment because the cost of the drugs reaches up to $16,000 (in Russia, up to 500,000 roubles).
On 24 July, demonstrations were held in many countries to protest against these pharmaceutical companies. Here is the information that I was able to collect on some of them today.
The Georgian Harm Reduction Network (GHRN) coordinated a week of actions along with its member organizations: New Vector and Hepa Plus in Tbilisi, Step to the future in Gori, Rubiconi in Kutaisi, Xenon in Zugdidi, Ordu in Poti, Tanadgoma and Imedi in Batumi. The campaign was supported by the European Union, Open Society Georgia Foundation and Médecins du Monde.
There was great support from the media – all channels appeared. Roche rep. stated in the interview that they are expecting considerable price reduction in the third quarter of this year. The deputy minister of health comments that price should be reduced 4 times at least!
24 of July: picketing in front of Roche and Merk’s offices in Tbilisi asking for dramatic prices reduction of peginterferon. Activist were carrying their own funeral photographs in black frames to stress they are walking dead if pharmaceutical remain greedy.
In front of Roche’s office - on the banner: “Nu Roche-av!” (Do not "roche" bullshit – in Georgian)
In front of Merck on the banner “Nu khar Merk-antiluri” (Don’t be MERCKcantile – in Georgian).
27 & 28 of July: with the special EU bus, a national campaign tour across the country was organized. This bus made stops in several towns: Gori, Kutaisi, Zugdidi and finished in Batumi – a seaside resort town where all the people go for vacation. In Batumi, a kite action was made on the beach where hand fans and paper caps with campaign identity were distributed to the public. In the evening some of the most popular bands performed during a concert organized in the city center.
On this flyer: «HCV can’t wait, it’s time to drop the prices. Peginterferon cost 15,000 USD in Georgia. Drop the price Vs.USD 2,000 in Egypt. Stop selling treatment as branded clothes, treatment is not for fun».
On july 24, a protest action was carried out in Moscow in front of the Ministry of health of Russia. Activists of the "Patients’ control" came to officials with the requirement to force manufacturers of hepatitis C drugs to decrease prices. The protest took place under the slogans: "There are 5 million people with hepatitis C in Russia", "Treatment costs 500,000 rubles", "Prices Roche and Merck are killing us", "Force Roche and Merck to lower prices".
The same day activists of the "Patients’ control" held pickets at the offices of pharmaceutical companies Roche and Merck and sent letters to them demanding price reductions for hepatitis C treatment.
The prices of the main component of HCV treatment - pegylated interferon – are constantly high for the last 15 years. There are only two major manufacturers of pegylated interferons in the world - Roche and Merck.
"As for today 5 million people are affected by hepatitis C in Russia. Not everyone can afford Hepatitis C treatment. People are getting into debt, sometimes they are forced to sell their homes to buy treatment. We have repeatedly asked the manufacturers to lower prices, but haven’t received any reply. Our last hope - that the new composition of the Ministry of Health will hear us and will take drastic measures to ensure affordable treatment - namely, force companies to decrease prices”, - says Andrey Skvortsov, leader of “Patients’ control” movement.
Some photos and videos can be found here
MOLDOVA. The League of People Living with HIV in the Republic of Moldova
Chișinău, 24 July at 11:00 a.m., a demonstration took place in front of the offices of the pharmaceutical company Roche: "We won’t forget, we won’t forgive, 15 years of treatment for $15,000"!
More than 20 activists from patients’ organisations and representatives from the Advisory Board of patients’ communities gathered in front of Roche’s office in order to express their dissatisfaction with the company’s high prices and to submit a written demand that the price for a standard treatment regimen for hepatitis C, 48 weeks (syringe / ampule) be reduced to no more than $2,000, so that patients infected with the hepatitis virus will be able to afford this life-saving treatment.
During the demonstration, while waiting for a reaction from Roche, activists held signs with slogans criticising the high pricing and the inhumanity of the pharmaceutical company that fills its pockets at the expense of sick people. "Selling my kidney to cure my liver ", "You have hepatitis. Sell your apartment and then start treatment", "Roche, your prices are killing us", "Our deaths are your fault " and "I’m looking for a loan so I treat my hepatitis"
Repeated attempts to reach the floor where the Roche offices are located were unsuccessful. The pharmaceutical company Roche will be responsible for the lives of 60,000 patients infected with hepatitis C who right now need life-saving treatment!
President and Prime Minister on Vacation – Hepatitis C on Attack!
Ukraine once again faces July 28, 2013, the World Hepatitis Day, without the specialized National program and without the funds allocated from state budget for the procurement of vital medicines.
Today in Kyiv the patients with Hepatitis C and representatives of the civil society organizations have ceremonially unearthed from under a thick layer of sand in Kyiv Hydropark the concealed Governmental Draft of the State program for combating the spread of viral hepatitis and set it adrift down the Dnipro river together with the open petition to the President, hoping that the documents would finally reach the vacation venues of Ukrainian statesmen, and radically improved National program with the adequate funding will finally be approved, and the responsible officials will stop misleading so impudently 1.2 million of their fellow citizens living with Hepatitis C.
Some photos can be found here
The press release is available below.
КYRGYZSTAN - Partners Network Association.
A community demonstration under the slogan "Access to all! Treatment for everyone!" took place on 24 July 2013, in front of Kyrgyzpatent and the KR Ministry of Health.
Volunteers from the the community organisation "Property of the Republic", the youth network for peer education "Y-Peer", the organisations "Rance Plus", "Right to Life", and "Ergene" and the community of people infected with viral hepatitis C participated in the demonstration.
Posters with the following slogans were displayed: "High prices – short life", "There is a law! There is a patent! = No access to drugs!", "220,000 people with hepatitis C, 220,000 people are waiting for life!", "Change the patent law and you’ll extend our lives", "If you have a heart, save my liver!", "Roche, lower your prices", and "Hepatitis C + La Roche = Affectionate Murderer".
Participants continued the demonstration in front of the Ministry of Health, where they released 100 balloons into the air as a sign of solidarity with people infected with viral hepatitis C. Activists from the demonstration were invited to discuss the organisers demands with the Deputy Minister of the KR Ministry of Health.
As a result of this meeting, it was announced that the Ministry of Health does not have the authority to conduct negotiations with pharmaceutical companies and to make demands that the price of drugs be reduced, but it is willing to join our initiative and to make a recommendation to the pharmaceutical companies that they reduce the price for drugs used in the treatment of hepatitis C. Negotiations with Roche are ahead!
Some photos and videos here:
LATVIA - Community Association HIV.LV
A community demonstration is in the works: "We will donate a million to the Ministry of Health, and to the pharmaceutical companies: scissors!". The demonstration had two targets: the Ministry of Health and the Latvian offices of the pharmaceutical companies МerckSharp&Dohme and Roche.
The demonstration organised by the Community Association HIV.LV will take place on 31 July from 11:00 to 11:45 in front of the Ministry of Health (Brivibas Street 72, Riga).
Three new posters will be produced (in Latvian) for the demonstration that will continue the "black yellow“ poster series on access to hepatitis C treatment: "Hepatitis C is dancing rock and roll at the funerals of the sick", "Pay for the dance of death so there will be money for treatment" and "Pharmaceutical companies don’t have any pennies to buy scissors so they can cut prices".
Two pairs of scissors, which were painted an ugly yellow and dotted with bloody spots were purchased for Roche and Merck. At the end of the demonstration, the scissors, beautifully packaged in cellophane and tied with a yellow bow, will be delivered to these pharmaceutical companies along with an accompanying letter.
You can see photos of the posters here
Participants in the event walked with posters through the streets of Yerevan in the direction of the Armenian office of HOFFMAN LA ROCHE. The participants carried posters with slogans: "Your treatment isn’t worth one cent", "Your prices are killing us. Ministry of Health, Make Them Lower the Prices, " "Move the prices from the point of death”, "Roche makes money with people’s lives", and "15 Years with No Price Reduction. More than $16,000 for 1 treatment regimen. Probability of failure up to 50%".
A company representative approached the demonstrating participants near the office and invited one of them to come with her. Representatives from two organisations met with the director of HOFFMAN-LA ROCHE’s Armenian office, Anna Hovhannisyan. The meeting lasted approximately 30 minutes. Ms. Hovhannisyan said that they were open to collaboration and would be happy to meet in the future and to discuss any concerns. She also offered to contact the Ministry of Health with a proposal to introduce the monitoring of hepatitis C cases. We submitted a letter containing a demand to review pricing policy and to reduce the prices for pegylated interferon to $2,000. She also noted that she was not competent in questions of price reduction, but that she would definitely inform the field office of our request.
Afterwards, the participants in the demonstration headed to the Ministry of Health, where they submitted a letter to the minister demanding that a system for monitoring hepatitis C be introduced, separate financing for a separate hepatitis program be allocated, and negotiations conducted with importing companies with the goal of significantly reducing the pricing of pegylated interferon.
In addition, during the press conference after the demonstration, the goals of the event were presented. In Armenia, the situation with regard to hepatitis C remains unclear, because on the one hand, there is no statistical data, although according to specialists, many people have been infected, and on the other hand, while there is a drug for radical treatment in Armenia, the prices are so high that many prefer to live with the disease. "The strongest weapon in the spread of Hepatitis C is our silence. The time has come to break this silence with the help of those infected, with health care managers, community leaders and the general pubic.
The demonstration was covered by several major Armenian television stations and by the electronic mass media.
Some photos can be found here