The truth you need to know about People who Use Drugs (PUD)
The role of people who use drugs on successfully achieving the target 3.3 of the Sustainable Development Goals (SDG)
- People who us drugs have typically been excluded from Hep C treatment opportunities, due to the ‘ill-perceived’ risk of discontinuation from the treatment course in many countries. But studies of Direct Acting Antivirals (DAAS) have found that people on Oral Substitution Therapy (OST), including those who continued to use illicit drugs, maintained good adherence and had high sustained response rates comparable to those of non-drug users in the trials. We have many friends who have self-medicated with Indian made generics and have cured their Hep C. One may wonder why on earth would drug users seek medicine and complete the treatment on their own? They would of course, because people who use drugs are inherently not the enemy of their own life. Treatment, in many cases begins with prejudices and often “physical discomfort” is misunderstood as withdrawal symptoms. Governments and health care providers should understand that successful treatment often depends on having the right systems in place rather than focusing on drug use behavior as the unit of analysis.
- People who use drugs have been the most effective way to reach out to their hidden peers in both HIV and Hep C response. May it be through some funded projects or in an individual capacity, we have been supporting our peers with the right prevention and treatment messages. Various misconceptions on Hep C still exist in every country. The reality is that most people who use and inject drugs are unaware that they are infected and Hep C treatment rates among them are very low. There are a number of reasons for this, including the asymptomatic nature of virus itself, paucity of strategic information, cost of treatment and lack of funding for Hep C interventions, which is further exacerbated by criminalization of drug use.
- We have been an educator and a support system for our friends who undergo the screening and treatment since the era of peg-interferon. We have been there to share happiness when some of our friends were cured. We were there to look after when some of our friends were re-infected or hospitalized due to the side-effects. We are always there to mourn when our friends die due to Hep C and other health issues. The essence is that we make up a good peer educator, outreach and support system; and meaningfully engaging and mobilizing our community is the best chance governments have to respond Hep C epidemic.
- People who use drugs relentlessly are in pursuit of serving the community – through whatever means. People who use drugs in most of the countries have been supporting their peers residing in different countries to access affordable generics, without worrying about the regulatory barriers. Governments could have made access to generics much easier, faster and cheaper, but since they have more lucrative business to take care of, we have taken the responsibility on our shoulders. It is not only our community that we have served but anyone in dire need for that matter. Let me share with you a short memory. Recently, in Thailand, we assisted someone to purchase generic DAAs from India. We do not know if she belonged to our community but she was in need. She had cirrhosis and her doctor had prescribed Sofusbuvir +Daclatasvir for 6 months – costing her with approximately 160,000 Thai Baht or (US $5,000+) per month. We were able to get her into medication in less than 35,000 Thai Baht (US $1000) for the entire 6 months. Her daughter regularly updated us of her progress with her smiling photo as if they were saying ‘thank you’ – it came to us with an unimaginable level of determination to break the rules and regulations again and again if it saves lives.
- Price and regulatory barriers are one of the biggest and unavoidable barriers to accessing Hep C medicines. We must not undermine the role of community advocacy in overcoming it. In the early 2000s, significant price reduction on effective HIV medicines (from several thousand dollars per person per year to below US$100) led to substantially increased access to ART around the developing world. This did not happen out of the blue but rather required a combination of mechanisms including: (1) huge advocacy movement led by affected communities; (2) pooled and joint procurement agreements or opportunities by large entities (such as the Global Fund and UNITAID); (3) increased demand for HIV medicines by the mobilisation of a co-ordinated international response; all underpinned by (4) an unprecedented expansion of generic manufacturing. Unlike the global HIV response, it is unfortunate that we do not see the same level of support to people who use drugs to perform advocacy; the price of DAAs may have reduced in some countries but are not accessible for people who use drugs across the region and diagnostic costs are higher than the medicine itself.
- Despite all the hostilities that our community face, national networks of people who use drugs in India, Indonesia, Vietnam, Thailand and Nepal have been advocating to overcome these barriers. For instance, since 2010 in India, community and civil society groups have been actively opposing Free Trade Agreements (FTA). They have filed several pre-grant oppositions to the office of the controller of patents for numerous DAAs. The Indian Drug Users Forum (IDUF) sits on the committee for National Action Plan for Viral Hepatitis and has successfully pushed for prevention and treatment of HIV-Hep C co-infection with the Global Fund and Ministry of Health in India.
- PKNI, the network of people who use drugs in Indonesia is one of the strongest activists network in the Asian region. Through their collaborative advocacy efforts, thousands of our community members are benefiting from treatment. Similarly, the Vietnam Network of People who Use Drugs in Vietnam have been advocating to include HepC under the universal health coverage scheme; Community groups in Thailand, Malaysia, Cambodia, Nepal and other countries have been advocating for affordable diagnostics and treatment of HepC. Inside every, person who use drugs lies a great activist. We must build the capacity of people who use drugs in these issues and engage them to more effectively organize, advocate and be part of the solution.
- We recognize and welcome the level of progress being made with respect to the commitments and advancements of newer, safer and more potent pan-genotypic Direct Acting Antiviral (DAA) regimens. But at the same time, we insist on the full implementation and access to affordable diagnostics and treatment services without any delay because millions of lives are at stake. Since effective programming stems from the quality and availability of data in the country, governments should invest resources in generating national and sub-national data on HepC among people who use drugs. National guidelines and strategies for diagnosis, treatment and care of people living with HepC should be developed through meaningful engagement of people who use drugs. Finally, governments must ensure equitable access to affordable diagnostics and treatment with the new DAAs.
Barriers to perform our role
In the realm of HIV, it has been long established that criminalization and punitive approaches prevent people who use drugs from accessing life-saving care and support services. After almost 30 years of reiterated message, here we are now trying to explain the same for Hep C. People who use drugs have been forced to suffer through at least three major crises – infection of blood and airborne diseases, overdose due to massive drug contamination and the so-called “war on drugs”.
- However that is not the thing. The thing is that “We are not the priority” – and it is as simple as that. Not that there has been no progress in terms of Hep C response: certainly there are, but when we talk about people who use drugs “we are simply not the priority”. We have been denied from participating in clinical trials, from various opportunities, from forming our organizations.
- Not prioritizing us for health services is one thing but we have been the targets of politically motivated war. Asian governments are killing us like some stray animals. In the Philippines over 20,000 people have been brutally murdered since June 2016. Over 65,000 people have been arrested. Those in prison are forced to sleep piled up on one another due to overcrowding. In August 2017, they killed 32 people in one night because they were suspected of drug use – “suspected” they do not even know whom they have killed. Similarly in 2017, it has been reported that Indonesian government have extra-judicially killed at least 107 people related to drug offence. Cambodia declared war on drugs and arrested over 17,000 people for drug-related offences. What kind of policy is this? What sort of future are we trying to build with a bloody war and dead bodies in the streets? Why is drug use a moral issue that the government decides to either quarantine or kill us all?
One of the fellow AIDS activists from Nepal, who currently works at ANPUD, Mr. Rajiv Kafle said – “I have lived with HIV for nearly 20 years and even during the AIDS crisis I did not loose as many friends in any given day as we are losing them today since this crisis began”.
- Last month, in the 37th session of the Human Rights Council, UN High Commissioner for Human rights raised the issue while he stated that –
“Some States view human rights as of secondary value – far less significant than focusing on GDP growth or geopolitics. While it is one of the three pillars of the UN, it is simply not treated as the equal of the other two”.
Seriously, why is human right not the priority for United Nations? Member states are pushed, or in some cases forced, to ratify the UN drug conventions. The universal declaration of human rights that came before the drug conventions is simply useless when it comes to protecting our community. It would be more appropriate to say that human rights are not universal but violations of human rights are rather unfortunately universal.
For more than half a century, people who use drugs have been defined either as a social evil or the people with a chronically relapsing brain disease. We are perceived by many governments and societies as their enemy, many see us as public nuisance while others as victims, many think that people who use drugs are not functional, many think we are beyond redemption and our brains have melted as a result of drug use. Scientific evidences that counteract such inhumane system are easily ignored.
To conclude, unlike what our governments and societies think of us, We have shared the vital roles of people who use drugs at different level of responses to eliminate Hep C – from as a patient to peer support, as a Hep C prevention outreach to an advocate. We have contributed equally, if not more, to the global HIV response. We have organized our community at national, regional and global level. There are organizations led by our communities all around the world supporting peers to access health services, protecting peers from human rights violations, saving lives of peers from overdose and other diseases, saving peers and the societies through harm reduction messages, advocating in collaboration with many stakeholders for evidence and rights-based drug laws and policies at different levels. We, who you have known as “Junkies”, have been doing all of it in the context where we are criminalized, where we are highly stigmatized and discriminated, where we are have been or forced to live in fear of being abused, tortured, incarcerated, and extra-judicially killed. We wonder how many thousand times more effective we could have been in presence of enabling laws and policies that are evidence-based and that respect basic rights of people who use drugs.
This system, at one breath promises us health and well-being but dehumanizes us on the other. We do not need a system that victimizes people. We need to have a system that does not treat people differently. How is it even possible to envision elimination of viral hepatitis when our organizations and communities are not considered as allies? UN and country governments must acknowledge the level of effort our community has made to achieve the SDG targets; they must begin to see as well as engage us as the ultimate solution. There is nothing for us – without us.
Key highlights on the Hep C epidemic and commitments
- An estimated 110 million people have a history of Hep C infection and 80 million have chronic viraemic infection worldwide. In 2013, Hep C was ranked as the seventh highest cause of mortality globally, with an estimated 1.45 million preventable deaths per year from acute infection and hepatitis-related liver cancer and cirrhosis.  South and East Asia are the regions with greatest numbers of deaths attributed to viral hepatitis, while Central Asia has one of the highest mortality rates. In Southeast Asia, 78% of the 408,000 deaths related to viral hepatitis is attributed to HBV and HEPC, ranking cirrhosis of liver as the top 5 causes of death among the age group 15-59. Despite the significant burden on lives, communities and health systems, hepatitis has been largely overlooked as a health and development priority until very recently.
- Globally, it is estimated that 67% of PWID are infected with HEPC. The World Health Organization (WHO) recognized people who inject drugs (PWID) as the population at higher risk of viral hepatitis infection because of the shared use of contaminated injecting equipment.
- Based on the 2006 Political Declaration on HIV/AIDS, (4) in 2009, the WHO, UNODC and UNAIDS technical guide recommended a comprehensive package of interventions for the prevention, treatment and care of HIV among people who inject drugs. Member states reaffirmed these commitments in the 2011 and 2016 and were also widely endorsed by the Economic and Social Council, the UN Commission on Narcotic Drugs, the UNAIDS Programme Coordinating Board, the Global Fund and PEPFAR. (5-7) Asian countries have introduced some combinations of harm reduction interventions including the Needle Syringe Program (NSP) and Opioid Substitution Therapy (OST), however the coverage of these essential services have been very low despite the significant proportion of new HIV infections among people who inject drugs. Countries with a high HIV burden like Pakistan do not implement OST services and the Philippines do not have NSP or OST. (3) Almost after a decade, there is no substantial progress made in terms of the introducing and scaling up the vaccination, diagnosis and treatment of viral hepatitis, which is one of the nine interventions of the comprehensive package.
- In September 2015, the United Nations General Assembly adopted the 2030 Agenda for Sustainable Development. The Goal 3.3 targets that – “By 2030, to end the epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases and combat hepatitis, water-borne diseases and other communicable diseases.” Though explicit as a global public health threat, such global recognition has not necessarily resulted in country action. We are also quite shocked with the fact that the target 3.3 does not have any indicators of Hep C elimination.