ANPUD June 30, 2017 – Biennial National HIV, STI and Hepatitis Program Managers meeting of selected Asian and Pacific island countries, Manila, Philippines [By Mr. Rajiv Kafle]
Firstly, we would like to express our sincere thanks to WHO for making us a part of this important planning process and allowing us a meaningful opportunity to voice our issues, concerns and challenges. We feel grateful also to be able to connect with all of you and hope to work more closely in future. When our goal is elimination, our efforts cannot be ‘business as usual.’ The amount of effort that you all have put in preparation for the meeting as well as smooth running of the various discussions is simply amazing. I have personally learned a lot in these 5 days and every bit of it will be helpful while we do our own meetings and training in future.
Now I would like to move into some points that we as network of people who use drugs in Asia would like to underline, highlight and record as part of deliberations of this important meeting.
- People who use drugs always faced numerous challenges historically as well as today in their day to day lives just because they decided to do something that is considered from ‘not normal’ to immoral and illegal. We are never seen as any one of you who also get excited whenever there is a coffee break or frustrated to learn that there is a no smoking policy in the premises. Evidences show that smoking is equally or more harmful than some of the drugs that we take for which many of us have to give up our lives and leave our families and children way too early. This is not fair. Let us be very clear that ‘elimination’ of people who use drugs is not the answer. Because we have been pushed beyond anyone had ever imagined with the ongoing so called ‘war on drugs’ we also have no choice than to push back. When so many of our members are killed for no reason there is nothing else we can do from here than to rise and fight back with all our might.
- There are two parallel crisis that our community is facing right now. On one hand our community is facing a massive drug contamination led overdose crisis and on the other of course the senseless ‘war on drugs.’ ‘Mowing down’ or ‘bulldozing’ are probably the right metaphors to understand what is happening today with our community. 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 and since this crisis began. We know the answers how to avoid this crisis. Answers that are based in evidence and answers that are pre-qualified by WHO yet our voices are not heard or for that matter grossly ignored.
- We urge all parties specially in this case many of our leaders, governments and law enforcement to take a deep breath and calm down a bit. The road that you are taking leads you nowhere and it is a ‘dead-end’ – literally. Those who are dead however will be in the right side of history and rest who keep silent in these crucial times will be held accountable if not in this world somewhere else.
- There is an ongoing war and as in every war there are people who call for an end to the war or at least a ceasefire to provide humanitarian assistance. However in this war we have not heard those calls as loud and nor they are consistent. We urge all our colleagues, allies and friends across the board to raise your voice to stop this injustice and be on the right side of history when this crisis ends.
- Because what is going around us is so significant that I could not stop myself to express our political views before diving into what is requested from us in the agenda of this meeting i.e. ‘the role of communities in access to Hep C treatment.
- It is already evident from the past experiences with access to HIV treatment the important role that communities play in making these one long term dream into reality. What I would like to highlight today is what more we can do and how we can collaborate more effectively in future.
- First let me go into the challenges that we are facing when it comes to accessing Hep C treatment. Like with HIV treatment access we are again faced with the issue of high cost. High cost of both the diagnostics and treatment. In places where treatment are available in a significantly low prices the cost of diagnostics are still very high. For example, for me to access generic Harvoni today is cheaper than doing 2 viral load and 2 fibroscan at the start and end of treatment. On the other hand in many rest of the places the price of treatment and diagnostics are simply unaffordable.
- Second, because the prices of these drugs are so different from place to place, the chances that someone ends up paying much higher than they should is also a major issue. We continue to hear doctors and other health providers actually profiteering significantly from this uneven pricing.
- Now let me share some thoughts on what our roles are in facilitating access to treatment. We would like to be part of the price negotiations wherever possible but we cannot do that on our own hence we urge WHO to involve us at every level both for treatment as well as diagnostics price discussions. We can also play a key role in creating awareness as well as creating demand. Our roles do not end after the person is treated. We will need to continuously follow up to make sure that reinfections do not occur and monitor any treatment failures or drug resistance. We hope that WHO can support us specifically in ‘treatment literacy’ programs.
- However we do not expect WHO to help us in everything from involvement to funding we do feel that WHO country offices can highlight the importance of our roles to other stakeholders, decision makers during planning and implementation of the programs.
- Like governments representatives, communities and specially people who use drugs can be an integral part of this response. We can reassure you that our contributions will be constructive and helpful in resolving the challenges that we face.
Finally, Thank you all once again and lets keep in touch in future.