Category Archive: News
Check out this video about the legal battle with Novartis and the importance of protecting Article 3d and continuing to fight for access to medicines. Makee sure to keep an eye out for Sankalp founder and Director Eldred Tellis.
Here is the English translation and trascript:
Der Baseler Pharma-Multi Novartis kämpft derzeit an vielen Fronten: in der Schweiz, in den USA und auch in Indien. Dort ist ein hartnäckiger Patentstreit im Gang. Es geht um das Krebsmedikament Gleevec, ein Kassenschlager aus dem Haus Novartis.
Novartis, the multinational pharmaceutical company based in Basel, Switzerland is fighting on many fronts: in Switzerland, the USA and also in India, home to an ongoing legal dispute about Gleevec—Novartis’ top-selling cancer medication.
Seit Jahren versucht Novartis, Gleevec in Indien per Patent schützen zu lassen, um billige Kopien zu verhindern.
For years, Novartis has tried to protect its patent on Gleevec in India and prevent cheap generic versions from being made.
Das wäre verheerend sagen internationale Hilfsorganisationen. Novartis setzt mutwillig das Leben von Millionen von mittellosen Patienten aufs Spiel. Der Fall geht nun in die letzte Runde.
International aid organizations say that would be catastrophic. Novartis is putting the life of millions of low-income patients on the line. The case has now reached the highest court in India.
Bruno Amrein über den Schowdown im indischen Patentstreit.
Bruno Amrein reports on the “showdown“ in India.
Mumbai. Anfang Dezember.
Mumbai. Beginning of December.
Vor der Konzernfiliale von Novartis marschieren rund 200 Menschen auf. Sie demonstrieren gegen den Schweizer Pharmamulti.
Around 200 people are demonstrating against the Swiss multinational in front of Novartis.
„Leben statt Profite“ und „Patienten statt Patente“ lauten die Slogans der Protestierenden.
Protesters‘ signs read “Lives before Profit” and “Patients before Patents”.
Angeführt werden sie von Eldred Tellis, dem Direktor einer AIDS-Hilfestiftung.
They’re being led by Eldred Tellis, Director of a AIDS NGO.
Wir fordern Novartis auf, ihre Klage gegen die Regierung zurückzuziehen. Sie gefährdet das Leben von Millionen von Menschen, die von indischen Medikamenten abhängig sind.
We’re campaigning for Novartis to drop its case against the government. They’re putting the lives of millions who need Indian medications in danger.
Vergeblich sucht Tellis das Gespräch mit Novartis. Außer dem Sicherheitspersonal lässt sich niemand blicken. Der Schweizer Konzern kämpft um lukrative Patente; viele Patienten bangen um Ihre Medikamente.
Tellis tries to speak to Novartis in vain. No one appears except security. The Swiss company is fighting for lucrative patents; many patients are fighting for their drugs.
Alkan Sonwane Zum Beispiel. Mit ihrem Mann kommt die 32-jährige ins Zentrum der Krebshilfe CPAA (Cancer Patients Aid Association) in Mumbai, einer privaten Stiftung, die sich für Krebspatienten einsetzt.
32 year old Alkan Sonwane comes with her husband to the Cancer Patients Aid Association in Mumbai. CPAA is a private foundation that advocates for cancer patients.
Die Sonwane sind Bauern und leben mit einem Einkommen von 60 Franken im Monat am Existenzminimum.
The Sonwanes are farmers and live at the poverty line with 60 Swiss Francs (US $65) a month.
Alkan Sonwanes Krankheit war für sie zuerst ein Schock.
Alkan Sonwane’s diagnosis was a shock for her at first.
Vor 2 Jahren haben wir erfahren, dass meine Frau Leukämie hat. Wir waren verzweifelt, denn ich muss auch für 3 Kinder und meine Eltern sorgen. Noch dann wurde Alkan aufgenommen und seither bekommen wir die Medikamente, dank denen sie weiterlebt.
Two years ago, we found out my wife had lukemia. We were in despair because she needs to take care of my three children and parents. Since then CPAA has covered the cost of her medication. She is still living, thanks to CPAA.
Die Patienten im Wartezimmer leiden alle an chronischer Leukämie – CML – und sie sind alle zu arm, um sich Medikamente leisten zu können.
Patients in the waiting room all suffer from chronic leukemia. They are all too poor to afford medication.
Auch der 41-jährige Manish Sarvaye. Er lebt vom Verkauf von Räucherstäbchen. Einmal im Monat kommt er zur Kontrolle und erhält sein Medikament. Sein Leben lang ist er darauf angewiesen, ein indisches Generikum mit dem Namen Veenat, das den Blutkrebs unter Kontrolle hält.
41 year old Manish Sarvaye is one of them. He subsides by selling incense. Once a month, he goes for a check-up and gets his medicine. For the rest of his life, he will take the Indian generic Veenat to keep his blood cancer under control.
Es ist ein Geschenk Gottes. Ohne dieses Medikament könnte ich nicht weiter leben. Und ich selber hätte nie genügend Geld dafür.
This is a gift from God. Without this medication, I wouldn’t be able to live on. And I would never have enough money for it.
Viele Patienten können dank Veenat wieder ein normales Leben führen. In der Rhea-Abteilung des Zentrums werden sie darauf vorbereitet.
Thanks to Veenat, many patients can continue to live a normal life. They’re getting prepared for it in the rehabilitation wing of the center.
Shubha Mandgal und ihre Organisation sichern so Tausenden von Krebskranken das Überleben.
Shubha Mandgal and her organization are saving the lives of thousands of cancer patients.
Wir sind der Meinung, dass alle Krebspatienten die bestmögliche Behandlung erhalten sollten, welche die Medizin zu bieten hat. Finanzielle Gründe sollten nicht schuld sein, dass sie diese nicht bekommen.
We feel that all cancer patients should receive the best treatment and medicine available. Financial reasons shouldn’t hamper this.
Doch die kostenlose Medikamentenabgabe des Zentrums ist in Gefahr. Denn das Medikament Veenat ist ein indisches Nachahmerpräparat, das auf dem Werkstoff Imatinib aufbaut, und genau darauf will hier Novartis unbedingt den Patentschutz.
This free service of handing out medicine is in danger. Veenat is an Indian generic, made from the active pharmaceutical ingredient Imatinib, which Novartis is trying to patent.
Es war der Basel-Konzern, der den Werkstoff Imatinib 1993 entdeckte. Novartis entwickelte daraus das Medikament Gleevec, das zu einem Kassenschlager wurde. In über 40 Ländern ist Gleevec patentiert. Doch Indien lehnte die Patentanträge ab. Der Wirkstoff Imatinib sei zu alt sagten die Behörden in Indien.
The Basel-based company first invented the ingredient Imatinib in 1993. From this, Novartis developed Gleevec, a top seller, which is patented in over 40 countries. But India is refusing its patent application, saying Imatinib is too old to warrant a patent.
Indien führte erst 2005 Patente im Pharmabereich ein. Medikamente, die vor 1995 entwickelt wurden, können nicht geschützt werden. Doch Novartis gibt den Kampf bis heute nicht auf. Gleevec sei weiter entwickelt worden, und deshalb zu patentieren, sagt Novartis.
Pharmaceutical patents were first granted in India in 2005. Medicines that were developed before 1995 cannot be patented. But Novartis is not giving up. It says Gleevec has been developed further and deserves a patent.
Noch immer ist der Fall nicht entschieden. Das kommt Organisationen wie der Krebshilfe im Mumbai bis heute zugute.
The case has not yet been decided. Organizations like CPAA in Mumbai are benefiting from this.
Gleevec kostet heute mindestens 2500 Schweizer Franken pro Monat, je nach Dosis. Die Nachahmerversion aus Indien kostet nur ein Zehntel davon. Wenn wir diesen Prozess verlieren, werden tausende von Patienten nicht mehr die Behandlung bekommen, die sie brauchen und sie werden sterben.
Today, Gleevec costs at least 2500 Swiss Francs (US $2725) a month, depending on the dose. The generic version from India is only a tenth of the cost. If we lose this case, thousands of patients will not receive the treatment that they need, and they will die.
Bis für das Oberste Gericht in Delhi hat Novartis den Rechtstaat gezogen, weil Indien die veränderte Zusammensetzung von Gleevec nicht unter Patentschutz stellen wollte, greift Novartis das Patentgesetz selber an, und zwar den entscheidenden Artikel 3d.
Novartis filed a suit with the highest court in Delhi because India refused to patent Gleevec. Novartis is challenging the patent law itself, particularly article 3d.
Hier steht geschrieben, dass Veränderungen eines Medikamentes nur dann patentwürdig sind, wenn sie nachweislich eine höhere Wirksamkeit bringen. („enhancement of the known efficacy of that substance“) Nächsten Monat entscheidet das Höchste Gericht endgültig.
Its written here that medicines can only be patented if they enhance the known efficacy of a substance. The highest court will decide the case in February.
Leena Menghaney von der Hilfsorganisation Ärzte ohne Grenzen befürchtet, dass eine Änderung des Patentrechts zu einer Lawine neuer Patente führen würde. Für sie ist deshalb der Artikel 3.d zentral im Kampf um Zugang zu Medikamenten.
Leena Menghaney from the aid organization Médecins Sans Frontières is worried that a change in the patent law would allow for an avalanche of new patents to be filed and granted. Article 3d is therefore essential in the fight for access to medicines.
Artikel 3.d wurde ins Patentrecht aufgenommen wegen des weltweiten Patentmissbrauchs. Denn anstatt neuer Wirkstoffe zu erforschen, verändern die Pharmakonzerne einfach die alten und maximieren so ihre Profite. Indien wollte weder die Forschung noch der Zugang zu Medikamenten einschränken und sagte „wir geben euch Patente auf neue Wirkstoffe aber wir geben keine Patente auf alte Medikamente.“
Article 3d was created in response to the worldwide misuse of patents. Instead of inventing new pharmaceuticals, pharma companies are making simply making changes to old products so they can maximize profits. India wanted to encourage R&D and access to medicines and said, “We’ll give you patents for new pharmaceutical ingredients, but we won’t give you patents on old medicines.”
Mitten im Gewimmel der Altstadt Dehlis befindet sich der wichtigste Großmarkt der indischen Pharmaindustrie. Auch dank der Bestimmungen vom Artikels 3.d ist Indien zu einem der wichtigsten Generika-Hersteller der Welt aufgestiegen.
In the middle of Dehli’s old town, you find the Indian pharma industry’s most important market. Also thanks to article 3d, India became one of the most important producers of generics worldwide.
In den engen Gassen bestellen Apotheker ihren Nachschub oder decken sich gleich vor Ort mit Medikamenten ein. Die indischen Produkte kosten einen Bruchteil der Originale. Davon profitieren nicht nur die Patienten in Indien, denn indische Generika werden in die ganze Welt exportiert; ein großer Teil davon in Entwicklungsländern.
Pharmacists directly order their medicines here. The Indian products cost a fraction of the price of name brand drugs. Not only do patients profit from this; so do Indian generic companies that export worldwide, especially to developing countries.
Dilip Shah, der Präsident des wichtigsten indischen Pharmaverbandes glaubt, dass Novartis mit seinem Verfahren die indische Pharmaindustrie als Ganzes schwächen will.
Dilip Shah, the president of the most important Indian pharma association believes that Novartis is trying to weaken the whole Indian pharmaceutical industry.
Seit dem Jahr 2000 beobachten wir, dass etwa ein Dutzend internationaler Pharmaunternehmen versuchen, der indischen Generika-Industrie die Flügel zu stutzen, mit nationalen und internationalen Prozessen. Weil wir zu erfolgreich sind, und weil wir in den Entwicklungsländern Qualitätsmedikamente zu viel viel tieferen Preisen anbieten, das tut ihnen weh.
Since 2000, we’re monitoring about a dozen international pharma companies that are trying to clip the wings of the Indian generics industry. Because we’re too successful, and because we offer quality products in developing products at a much, much lower price, we’re hurting them.
Indien gilt heute als die Apotheke für die Armen der Welt. Sollte sich Novartis vor Gericht durchsetzen, wären von wichtigen Medikamenten möglicherweise bald keine Generika mehr erhältlich, befürchtet der Pharmaverband.
Today, India is the pharmacy of the world’s poor. If Novartis succeeds before the court, generics might soon become unavailable, says the Indian pharmaceutical association.
Es überrascht uns sehr, dass ein Konzern, der vorgibt, sich für die Armen einzusetzen, wegen eines einzigen Medikamentes eine Gesetzbestimmung stören will, die den Zugang zu Medikamenten erleichtert.
That is what is surprising to us. A company, which pretends to be working on behalf of the poor, is working to prevent access to medicines.
Auch bei der Organisation Ärzte ohne Grenzen befürchtet man weltweit gravierende Konsequenzen, wenn Novartis gewinnt. Vor allem den AIDS-Projekten von Ärzten ohne Grenzen könnten wichtige Medikamente verloren gehen.
If Novartis wins, the organization MSF fears this will have grave consequences worldwide. MSF’s AIDS projects could particularly suffer from losing access to important medicines.
Wir behandeln 170 000 HIV-Patienten weltweit, 80% von ihnen mit Generika aus Indien. Aber auch was andere Krankheiten wie die TB oder Impfungen betrifft, ist Ärzte ohne Grenzen zunehmend von indischen Generika abhängig.
We treat 170,000 HIV patients worldwide, 80% of whom are taking generics from India. But this could also impact treatment for diseases like TB and vaccines, which MSF gets from Indian generic companies.
Im Auffangzentrum der privaten Stiftung Sankalp in Mumbai treffen wir Eldred Tellis wieder, den Mann, der die Kundgebung vor Novartis anführte. Tellis und sein Team geben HIV-Positiven gratis Generika. Regelmäßig müssen die Medikamente gewechselt werden, um die Wirkung zu gewährleisten.
In the reception of the private foundation Sankalp in Mumbai, we met Eldred Tellis again, the man who was leading the demonstrations against Novartis. Tellis and his team give people with HIV free generics. New medicines must be regularly used in order to guarantee their effectiveness.
Es gibt mir etwas Hoffnung. Seit ich die Medikamente bekomme, habe ich Hoffnung.
This gives me some hope. Since I have medicines, I have hope.
Sobald Patente auf diese Medikamente vergeben werden, können sie in Indien nicht mehr produziert werden. Hersteller wie Novartis bieten einen über 20 Mal höheren Preis für dasselbe Medikament. Das ist weit mehr, als wir bezahlen können. Wir haben es hier mit Drogen-Abhängigen von der Straße zu tun. Wir sind ihre einzige Hoffnung.
As soon as these medicines are patented, they can no longer be produced in India. Novartis sells medicines for more than 20 times the price of what Indian generics cost. That’s way more than we can pay. We help drug addicts who live on the streets. They come to us and we are their main source of hope.
Über 2 Millionen HIV-Positive gibt es allein in Indien und nur sehr wenige Organisationen wie Sankalp. Der Zugang zu Medikamenten ist in allen armen Ländern ein zentrales Problem. Je nach Ausgang des Novartis-Prozesses könnte er sich weiter verschärfen.
India has more than 2 million HIV positive patients and very few organizations like Sankalp. Access to medicines is a central problem in all poor countries. Depending on the outcome of the Novartis case, access to medicines could get even worse.
by Suseelkumar, November 2008
Participating the World AIDS Conference and to be part of the ‘Community Tequio’, (Community Equip), was a lifetime experience. It was the first International Conference that I attended and must admit that I was not prepared to be part of such a huge gathering of 20,000 people.
We stayed at the Best West Hotel Majestic in the heart of the Mexico City, which was one of the boundaries for the grand open space, where there were flag hoisting parades every morning paying tradition to the first parliament held for the Country until two decades back. There was the Palace, which had been turned into Parliament after the Revolution, a Cathedral and an administrative building, which are reminiscent of the 18th Century architecture in Mexico.
We were 50 delegates there, representing the 25 Award Winning NGOs / CBOs from around the world and on 1st and 2nd August were briefed on the Community Tequio and the Inaugural Ceremony that was to be held on 3rd August, where the UN Secretary General was the chief guest. The ‘Community Tequio’, Community Dialogue Space was the forum created in the Global Village to show case the stories of success and the challenges faced by these NGOs / CBOs as well as to highlight the effectiveness and pivotal role of grassroots action worldwide in the field of HIV/AIDS.
My first observation about the activities of other NGOs was that the World over the activities were mostly community driven, where as in our country it is still through NGO based programmes. I felt that the major issues dealt or faced in African and Latin American areas are stigma and discrimination in the care and social integration. In that sense we, in India, is yet to give prominence beyond awareness activities and struck with nuances in the delivery of ART and segregating the high risks behaviours into communities of so and so, furthering endangering them to social labeling.
The world over, the movement is looking into the minute aspects of adverse effects on society, as a result of affliction, such as access to medicine and treatment, human rights, psycho social health, services to children orphaned by AIDS, vulnerability of other family members and advocacy instigating changes in policies and legislature for child custody, asset & property inheritance and prevention of trafficking.
We were also made aware the efforts for empowerment of women, involving women more in traditional councils, generation of community funding, change of attitude among Police, Administration and Judiciary, special programmes for the deaf and blind communities, alliances with faith based organizations, religious and opinion leaders to bring in an enabling environment for the society to respond to the situation.
Another pleasing aspect of the Conference was the presence of transgender and other sexual minorities vocalizing their existence and their involvement in HIV prevention, working for the care and support of people living with HIV/AIDS and the concerns they felt as barriers in the effort.
Daily deliberations at the Community Tequio celebrated success, shared knowledge, priorities and concerns. There were opportunities to enter into dialogue with donor agencies, global leaders and government officials on how to partner with and support locally driven community efforts on HIV.
The Conference was hosted outside the Global Village, there were presentations and discussions held simultaneously on various topics. The exhibitions and stalls were marked by materials and publications on various research studies and interventions, accompanied by pavilions set up by the multi national pharma companies propagating treatment and advanced monitoring facilities available currently.
Abstracted from AIDS India: North East: AIDS, HIV and misery co-exist, 2006
Images of guns, drugs and rebels have long defined India’s troubled North-east. A study carried out by the Nedan Foundation across eight states in this resource-rich, infrastructure-poor, conflict-scarred region highlights a new worry: the rising tide of human trafficking mostly women and girls and its potential for hastening the spread of HIV/AIDS.
At the 25 relief camps of internally displaced persons (IDPs) in Kokrajhar in Bodoland Territorial Council, Assam nearly 200,000 people are live without proper food. Kokrajhar is one of several hot spots in conflict-ridden North-east India. Since the late 1990s, hundreds of thousands of people have been displaced in the region by regular clashes between various militant and tribal groups. Traffickers carry out recruitment drives here making false promises of jobs as domestic help in big cities.
It was noted that more than 100 young women had gone missing from the camps over the past two years. Regional analysts fear that such “missing girls” may have been sold into sexual slavery or “temporarily married” ~ often a euphemism for prostitution.
The fear is that many such girls are extremely susceptible to HIV/AIDS and that many have already been infected.
Most of the girls are from broken families, having lost one or both parents in the region’s protracted ethnic con-flicts. Almost all had dropped out of school and faced a bleak future, the foundation discovered.
It is hoped that the study’s key findings, such as these from the eight states, will spur the Indian government, as well as NGOs, to come forward with initiatives to reduce the level of human trafficking in the region and thereby lessen the spread of HIV/AIDS in this troubled part of the country.
(This is a report by Plusnews, and does not necessarily reflect the views of the United Nations.)
From Ashoka India, Shivangini Tandon and Samuel Fernandes
Eldred Tellis, Founder and Director of Sankalp Rehabilitation Trust, was awarded the Ashoka Fellowship in 2008 for his outstanding work with the street drug user community in providing aid to them through targeted and sustained interventions. Eldred was officially inducted to the Fellowship at a public event in Pune hosted by Tata Motors.
Ashoka: Innovators for the Public, is a non-profit organization supporting the field of social entrepreneurship. Ashoka was founded by Bill Drayton in 1981 to identify and support leading social entrepreneurs through a Social Venture Capital approach with the goal of elevating the citizen sector to a competitive level equal to the business sector. The organization currently operates in over 60 countries and supports the work of 2000 social entrepreneurs or Ashoka Fellows.
Eldred was hand picked as a leading social entrepreneur and had to pass through a stringent time tested selection process. From nomination to election as a Fellow, candidates go through an extensive series of in-depth interviews, a judging panel, and a final executive board vote. While local Ashoka staff visit to evaluate candidates in their work environment, international experts review candidates against Ashoka’s criteria. Nominees are rigorously questioned by international staff and local experts about practical implementation—the blueprints that will make their ideas come to life—as well as personal background, values, motivations and aspirations. Eldred having being through the entire search and selection process of Ashoka met all five of Ashoka’s criteria:
- New Idea: A new solution to a social problem.
- Creativity: Ashoka Fellows are creative both as goal-setting visionaries and as problem solvers capable of engineering their visions into reality.
- Entrepreneurial Quality: The candidate needs to be completely absorbed by and committed to their vision of change
- Social Impact of the Idea: Ashoka looks for the potential of systemic change in the field and region of work
- Ethical Fiber: It is crucial that any individual introducing major structural changes be absolutely trustworthy. Every participant in the Ashoka selection process is asked to evaluate candidates for these qualities rigorously.
Eldred’s passion and commitment to his cause as well as his cutting edge work in prevention and treatment of HIV/AIDS, such as the unprecedented program for Injecting Drug Users in prisons convinced Ashoka of his abilities as a leading social entrepreneur. Eldred was publicly inducted into the Fellowship along with 17 other new Ashoka Fellows from India at a ceremony hosted by Tata Motors and supported by Google India. The guests of honour at the ceremony were Mr. Nihar Kothari, who is the owner and Chief Editor of “Rajasthan Patrika” the largest selling vernacular daily in India and veteran Ashoka Fellow CK Ganguly of the Timbuktu Collective.
Taken from Express Healthcare, May 2010
Sankalp Rehabilitation Trust has been providing dedicated care and support to over 2,000 street-based drug users and seeks to combat the spread of HIV/AIDS in Mumbai. Sonal Shukla takes a look at this unique endeavour
Project Hunar offers its members introductory computer instruction through a visual recognition approach
Ram Prasad is a happy man today: not only is he free from an appalling drug addiction, but also has a job, which has helped him to earn a living with dignity. Ram Prasad ran away from his home in UP at the age of eight and came to Mumbai. Soon after he arrived in the city, the streets became his shelter and he became addicted to drugs. To feed his addiction, he started stealing and ended up in jail several times. His health deteriorated due to consistent drug use. Like other street-based drug users he was on his way to a slow and painful death, until one day he heard about the Sankalp Rehabilitation Trust through a peer educator (peer educators are former drug users who are trained and empowered as outreach workers, to go into the field and meet drug users), which changed his life.
Today, Ram Prasad is himself a peer educator in Sankalp, and is determined to help others like him. Not only did he break free of the addiction but also received support, care and a source of income with the help of Sankalp. Today, Sankalp is helping over 2,000 street-based drug users like him in Mumbai.
The NGO received the prestigious Red Ribbon Award in 2008, awarded by UNAIDS every two years at the International AIDS Conference, designed to honour and celebrate community-based organisations for their outstanding initiatives that show leadership in reducing the spread and impact of AIDS.
“We support safe injecting, because they will inject anyway. They should not use reused syringes and die of AIDS”
Sankalp, a Hindi word meaning ‘taking a pledge’, has been providing dedicated care and support to street-based drug users and seeks to combat the spread of HIV/AIDS in Mumbai, India. Sankalp was started in 1995 by Eldred Tellis, a former heroin user himself.
“I took a centre’s help to treat myself and then worked there and rose to become an executive director. But then I realised that they were not willing to respond to the persistent HIV/AIDS problem in the street-based drug using community, hence I dropped them and went to the North East of India,” shares Tellis. There he involved himself with drug abuse treatment work which took him to states of Manipur and Nagaland. He worked with HIV problems and helped many of the drug treatment centres to incorporate HIV prevention in their programmes and build capacity locally. Today, Tellis is globally recognised for his understanding of scientific and psychological techniques used in reforming drug users.
“I realised that there was a need to address this problem in my own hometown, Mumbai, too,” says Tellis. For 15 years now, his NGO has been actively working for the street-based drug users, but with a difference. What makes Sankalp different from other NGOs working in the same area is its approach, which goes beyond just curbing the habit and HIV/AIDS prevention, and tries to bring drug users into the mainstream of society through regular rehabilitation efforts.
Step by Step
Sankalp has seven Drop in Centres (DICs) near the drug-using hotspots in Mumbai. These DICs provide holistic care to street-based individuals (called clients), who use brown sugar, a crude form of heroin. Clients are offered basic medical care, opioid substitution therapy, treatment referrals, and extensive one-on-one and group counselling, as well as advocacy and support throughout their rehabilitation. Sankalp has 10 peer educators at each centre at present. Each peer educator is assigned an area where they distribute clean needles and syringes to drug users. They let them know about Sankalp services and disseminate information on HIV prevention. These peer educators also collect used needles and syringes.
“If the needles and syringes are thrown away around areas like railway stations and bus stops where one finds these drug users, they can even injure an innocent person and pass on illnesses like HIV and Hepatitis C,” shares Tellis. As he points out, almost 20 per cent of street-based drug users today suffer from HIV/AIDS, and almost 80 per cent suffer from ailments like Hepatitis C. The peer educators also give primary health treatment to these drug users who suffer from many ailments and injuries.
Sankalp has an ambulance which picks them up when required and brings them to DICs. From DICs, the clients are sent for health tests to the main public hospitals in Mumbai. One of the peer educators takes them to the hospital as a nursing escort and thus trains them how to access healthcare. Once back from the hospital, they are counselled by trained counsellors. Due to their weak health, these drug users suffer from many ailments, including TB. Sankalp, in collaboration with DOT centres of the Government, has been doing TB screening for them. All the DICs are equipped with eight doctors, nurses and 10 counsellors who carry the process of treatment and rehabilitation further.
The Right Approach
Each peer educator is assigned an area where they distribute clean needles and syringes to drug users
All the DICs are equipped with eight doctors, nurses and 10 counsellors
The NGO has been working unceasingly to offer a sustainable livelihood once the drug users are free of their addiction
The NGO has been following the ‘Harm Reduction Philosophy’, which aims to minimise the harmful consequences of drug use. The first consequence which is minimised is the incidence of HIV/AIDS and Hepatitis B/C, by giving the drug users clean needles, syringes and oral substitution. Due to oral substitution, they do not feel the urge to take drugs. “By giving them oral substitutes, we actually reduce the crime which they might commit to buy the drugs. We support safe injecting, because they will inject anyway. So, it is better they don’t use the dirty, reused syringes and die of HIV/AIDS,” says Tellis. Once those clients approach the centres, their health needs are taken care of. “The Harm Reduction Philosophy is a unique approach that we follow to counter this serious issue of drug abuse in street-based drug users – which is the most forgotten area as people don’t even like to touch them. Besides treatment and counselling, we also feel responsible for their rehabilitation. In extreme cases, we have been giving them ‘Nivara’ – a place to stay in one of our centres,” shares BN Bhagwat, Chairman, Board of Directors, Sankalp Rehabilitation Trust.
The HIV positive patients among the drug users are handled by a special support group. They are given nutritious food and extra vitamins regularly. “We give them nutrition every day. We ask them to pay Rs 3 for the kichadi. If they come and sit for the sessions, they are given a meal,” says Tellis.
Prison Therapeutic Community
Many of the clients, who used to come to DICs for the oral substitution therapy programme, would suddenly drop out. “We would find out that they were rounded up by the police and thrown into jail just because they were drug users in the past. I later realised that some of them were also exploited sexually in jail,” states Tellis. To keep them safe in jail, Sankalp initiated ‘Project Nischay’ at Arthur Road Prison in 2004. This project has directed a therapeutic community to help with the rehabilitation of incarcerated drug users and prevent HIV/AIDS transmission. Sankalp’s medical officers visit the prison three times a week to conduct health check ups. The project co-ordinators work closely with prison authorities to provide care in the separate barracks for Sankalp’s clients.
The networking partner of Sankalp extends free legal aid to those in need and the staff reaches out to clients’ family members to prepare them for court hearings, and provides follow-up counselling and care for clients after their release.
Counselling and Rehabilitation
Sankalp provides counselling and rehabilitation with a difference. The NGO has gone much beyond just sharing information about HIV/AIDS and how to prevent it, with drug users. The clients are counselled about how they should take care of themselves, and relapse prevention is conducted, which has been instrumental in reducing the risk of relapsing. Explains Tellis, “We look at relapse triggers – such as how should they save money, not keep too much money with themselves, how they should be more responsible and how they should get back in touch with their families and once again build relationships, anger management etc. Part of the prevention is that those drug users should not use drugs again.”
The biggest challenge facing this NGO is to retain its staff. As Tellis points out, once counsellors and other support staff is trained, they become an asset to the organisation, but pay inadequate according to Government standards makes them leave the organisation after some time. “The Government issues us Rs 8,000 as rent which is not enough to acquire an adequate place. We hope to get some land from the Municipal Corporation in a prime location to continue this work,” states Tellis.
Rehabilitating drug users is crucial, believes Tellis. However, doing so has become a huge challenge for Sankalp. Rehabilitation comes under the purview of the Ministry of Social Justice and Empowerment whereas HIV/AIDS prevention is looked after by the Health Ministry, and both give monetary help only pertaining to their scope. Tellis expects much more convergence between the two, which in his opinion will give impetus to the rehabilitation of the needy. The support that Sankalp is getting from the AIDS Control Society in Mumbai is meant only for working with injecting drug users as they are considered at high risk of HIV/AIDS.
The NGO provides a helping hand to those who are still not at high risk. These drug users are sent to detoxification camps by the NGO. Each year, Sankalp has three to four detoxification camps of 15 days each. A regular camp has 15 to 20 clients, of which approximately 25 per cent stay clean on a long-term basis. JJ Hospital Nursing Association is offering space for these camps at Aksa Beach.
The NGO has been working unceasingly to offer a sustainable livelihood once the drug users are free of their addiction. In May 2009, Sankalp launched a partnership with Bangalore-based NGO AMBA CEEIC, geared at providing sustainable livelihood training to a group of recovering clients. Project Hunar offers its members introductory computer instruction through a visual recognition approach, help in developing professional skills, participation in educational sessions, and assistance finding group work in the data entry sector. In addition, the residential nature of Hunar ensures the consistent availability of medical, psychological and peer support, thereby creating a holistic environment in which to grow. “We are now putting all our efforts in finding the corporate tie-ups which will help us further expand the reach of this project,” says Tellis. The NGO now is trying to set up small BPOs for its clients. Working with the municipality for garbage recycling is also on the agenda as most of the street-based drug users work as garbage collectors.
Sankalp Rehabilitation Trust is presently involved in a case to ensure that people have access to treatment for Hepatitis-C. The drug in question is Peg-Interferon α2a, marketed by Swiss global health-care company La Roche Limited as Pegasys.
Hepatitis C represents a huge public health problem in India. An estimated 12.5 million people in India are infected with the Hepatitis C virus (HCV). Left untreated, it can lead to other complications such as liver cirrhosis, liver cancer, or liver failure. Those who suffer from an HIV-HCV co-infection have an increased rate of disease progression. Injecting drug users are especially vulnerable to co-infection; figures from Manipur show a high co-infection rate of up to 93% among injecting drug users. However, partly due to its high cost, treatment for HCV is not available in government hospitals in India. Thus, an ironic tragedy unfolds—people living with HIV are able to obtain treatment for HIV, but are dying because of their HCV-related complications.
In 2006, the Indian Patent Office granted a patent to Roche for Pegasys, the first product patent for pharmaceuticals granted in India under the new World Trade Organization Intellectual Property Agreement, which essentially grants a monopoly to Roche. Patients with chronic HCV, who need a six-month course of treatment of Peg-Interferon α2a, must purchase it at a cost of approximately Rs. 4, 36,000 [8,752.38 USD] (sometimes available at a discounted price of Rs. 3,14,496 or 6,313.28 USD). Again, Pegasys has to be taken in combination with anti-viral drug Ribavirin, which alone costs Rs. 47,160 [946.70 USD].
As we know, a patent grants a monopoly to the patent holder to prevent others from making or selling the same drug without its permission. If there is no patent, other companies can make and sell the drug. The resulting competition helps lower the prices of drugs, as has been clearly shown by the falling prices of HIV drugs.
Therefore, in May 2007, Sankalp filed an opposition to challenge the grant of patent to Pegasys. Wockhardt, an Indian company, had also filed a post-grant opposition against the patent granted to Pegasys.
Roche’s patent for Pegasys involves combining interferon – a naturally occurring protein which has been known for several years to be effective against HCV – with a structure called polyethelyene glycol (PEG), an inert substance. PEG helps to prevent the interferon from being broken down immediately by the body and thus allows it to remain in the bloodstream longer. This technology of combining interferon and other biologically active proteins with PEG had also been known for many years.
Under the law, a patent can only be granted to inventions that are new and involve an “inventive step.” Sankalp argued that the patent was wrongly granted as Roche’s “invention;” in fact, combining interferon with PEG was neither new nor inventive. Sankalp also opposed the patent based on other public health safeguards, which disallow patenting of “mere admixture” of known substances and patenting of a “new form of a known substance” without increased efficacy.
In a decision delivered in March 2009, the Indian Patent Office rejected the post-grant opposition filed by Sankalp against the grant of Roche’s patent for Pegasys.
The patent case has not yet been settled, and Sankalp continues to work to end Roche’s monopoly, decrease pricing of HCV medicines, so that we can provide affordable and necessary treatment for their clients.