The International Treatment Preparedness Coalition (ITPC) – China is working to support the immediate phase out of d4T, an anti-retroviral drug that has serious side effects. For several years, the World Health Organization (WHO) has raised concerns over d4T’s high levels of toxicity, and no longer recommends it as an optimal first line ARV.
Although China’s government has vowed to phase-out the drug, it remains common in many rural areas, due to the drug’s relatively inexpensive cost. In 2012, it was estimated that 26 per cent of the 140,000 people living with HIV (PLHIV) in China were still taking d4T.
According to ITPC-China Regional Coordinator Hongwei Lu, phasing out d4T will require a significant investment on behalf of the government into procurement of TDF, a suggested first-line alternative. It also requires improved treatment literacy among PLHIV. “Some patients who experience side effects on other ARVs switch back to d4T not realizing the long-term side effects may be more severe,” said Lu.
Some of the common side effects of d4T include lipodystrophy (when fat is re-distributed on a person’s body), peripheral neuropathy, and lactic acidosis, as well as damage to the liver and pancreas.
Since the beginning of 2013, ITPC-China has sent out leaflets and T-shirts among community-based organizations to raise awareness around d4T and advocate access to comprehensive and safe treatments, especially among the poor. ITPC-China has also tapped into Weibo, a social networking space, and other platforms to spread information about the negative consequences of d4T use and promote an alternative.
ITPC-China is also supporting a lawsuit in Shangdong Province, where a female patient was put on d4t despite the existence of guidelines that the ARV should no longer be used. As a result, the woman is suffering from d4t’s side effects. ITPC-China helped the woman identify a lawyer and provided funding for the lawsuit.
In the long-term, ITPC-China will advocate for more ARVs to become readily available in China, as having several, inexpensive options will be the only way to ensure more PLHIV have optimal treatment regimens.
For more information about ITPC-China’s campaign for the phase out of d4T, please email: luhonwi@gmail.com
This blog post originally appeared on the HIV Advocates website.
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ITPC China works to eliminate d4T
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ITPC visit to Guinea reveals persistent barriers affect treatment access with disastrous results
Dear ITPC colleagues,
On a recent visit to our partner organization AVG-Guinea in Conakry, Guinea in January 2014, I became aware of some serious barriers to HIV treatment uptake and related-care. I hope the following brief will be useful to those of you working in West and Central Africa as the situation in Conakry points to systemic, regional issues hampering treatment scale-up and access.
-First, I’d like to start by sharing with you the story of one of the patients I met, a woman who presented late at a clinic and was then diagnosed with HIV and TB co-infection (picture attached, consent was given). Due to this late presentation, as you can see her health had seriously deteriorated, and she is now struggling to regain it. The daily treatment regimen she was prescribed consisted of 8 pills (4 LOP/RIT, 2 Truvada and 2 TB pills); it was difficult for her to swallow the large pills in her weak state; she was nauseous and vomiting. According to the latest information received yesterday (Feb 7 2014) her health continues to suffer. Her case is not isolated; there are many other cases of people facing similar situations throughout West Africa.
-This woman’s story illustrates why it is so important to try and get optimal first-line treatment regimens in Conakry and elsewhere. Had this patient been on a one-pill-a-day regimen, her treatment would have been easier to take and perhaps she would have begun feeling better more quickly. In addition, she is not alone in presenting late at the clinic; according to AVG-Guinea, this is major cause of unnecessary loss of life in Guinea.
-The role of small, community-based organizations (CBOs) in Guinea (and other parts of West and Central Africa) are critical in linking PLHIV to diagnosis, treatment and care. The country lacks a centralized treatment distribution program, and instead PLHIV access treatment at whichever NGO or donor-funded program is closest to them (such as the GIZ or MSF clinic). With many people still living in rural areas, small CBOs are often the only way people receive support to get tested, access treatment and other essential services. Yet at present, there is a funding crisis for these groups and it is difficult to see how some of them will survive without small grant programs.
-Stigma and discrimination towards PLHIV in Conakry and other parts of Guinea result in many PLHIV experiencing social isolation, as was the case with the woman I met. As a result, they may lack a family member or friend to take care of them when in the hospital. The existence of these CBOs is therefore also vital in addressing this isolation and ensuring people feel cared for, especially when they experience co-infections.
If anyone is traveling to Conakry or would like to be in touch with this NGO to learn more, please contact me so we can discuss further.
In Solidarity,
Sylvere
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The Birth of the African Community Advisory Board (AFROCAB)
It is well know that a lot of HIV biomedical research has been conducted on the African continent, mostly by groups of people and institutions from other parts of the world.Unfortunately, on the whole, communities have not been meaningfully involved in the entire process of research from research protocol development to dissemination of results and what these results mean for communities. Various researchers have put
together community advisory boards (CABs) in pursuance of their own interests and to simply abide by ethical standards in the countries in which research is being conducted. Due to the lack of meaningful engagement of communities, the community led African Community Advisory Board (AFROCAB) was formally established in December 2013. Its members come from west, central, east and southern parts of sub‐Saharan African countries and I was happy to represent ITPC at this founding meeting.
Following an ITPC led World Community Advisory Board (WCAB) meeting held in Nairobi Kenya in 2011, African members present decided to establish an African led community driven advisory board that intends to engage with researchers and drug developers to ensure Africans in need of optimal HIV treatment get the best quality treatment similar to or better than what is enjoyed in the west.
The AFROCAB, once established, kick started its activities with actions to support Nigerian activists voicing their concerns over a company called Tyonex Nigeria Ltd that was providing non‐WHO prequalified, substandard and suboptimal ARVs to people living with HIV in Nigeria using funds provided by the Federal Ministry of Health with disastrous consequences; one of the Nigerian activists is said to have most likely lost her life after using products from Tyonex.
The AFROCAB mobilized African and international activists present at the recently concluded 2013 ICASA conference to pressure the Nigerian Government delegation to withdraw the Tynoex products from all programmes and to cancel the contract with Tyonex. Nigerian activists are making progress under the leadership of Obatunde Oladapo an AFROCAB member and one of the founding members of the ITPC West African Regional Advisory Committee.
It is suspected that other West African countries like Ghana and the Gambia may be experiencing the same situation as Nigeria. Unscrupulous business entities are making deals with governments to provide substandard medicines at the expense of innocent people. ITPC and AFROCAB are committed to ensuring quality is not compromised and that Africans in need of quality treatment are indeed accessing the best efficacious, safe and affordable treatment.
Bactrin Killingo
Senior Treatment Knowledge Officer ITPC
Co‐chair AFROCAB -
Reflections from the 2013 ICASA Conference in Cape Town South Africa
As a platform to scaling up HIV treatment, the recently concluded 17th ICASA conference was a buzz with themes, presentations and discussions aimed at asking and seeking answers to the question – how does Africa get to UNAIDS’ ‘zeros’ especially to ‘Zero New Infections and Zero Deaths’?
Various sessions in the conference seemed to suggest the thinking that if Africans can start treatment earlier as proposed in the 2013 WHO treatment guidelines, chances of approaching zero new infections based on the preventative benefits of treatment would be a reality. The logical questions around how and who to finance this paradigm then follow. In addition, and from a reflective angle, other futuristic questions to consider would perhaps be ‐ is this the beginning of pushing for the test and treat agenda in Africa? Are waters being tested to prepare for test and treat pronouncements in treatment guidelines in the very near future? What strategies exist to ensure those that will present late actually get ahead of the queue and access treatment without much further delay? While we have evidence showing early treatment has benefits, at what scale do we need to see this happen? There seems to be more questions to this new guideline that may not have answers until we jump into unchartered waters.
One undisputed resource that ICASA identified to make the ’zeros’ dream a reality is the involvement of communities in the implementation of the new treatment guidelines.Various community groups come up with the ‘how to’ implementing the guidelines.What is still begging is a discussion on how to support communities to be part of the guideline implementation and what commitments exist to provide this support. There isn’t much of expression of interest and an appetite for global players to support communities thus far, let alone there being plans to have African governments develop policies and strategies to include and support communities in the implementation of the new guidelines.
The conference seemed to illuminate a new awakening in the continent – the sudden realization that quality of life is more important than just being alive. Demanding for quality treatment through the provision of optimal regimens seems to be taking root especially amongst activist groups as demonstrated by AFROCAB activists in support of their Nigerian comrades against a government approved company distributing non ‐ WHO prequalified ARV. Entities with commercial interests seem to be entering the market to provide poor quality medicines through corrupt deals with the custodian of the peoples of various African countries. While this should be discouraged, the purists in the pharmaceutical industry want to take advantage and push the ‘fight the fakes’ agenda using global agencies thus threatening access to genuine life saving generics. Activist clearly made the point that quality should not be compromised while at the same time protecting completion that promotes price reduction and access to safe efficacious generic ARV.
But we still battle with the scourge of stockouts! When will it end? Who or what really is the problem? It is well known that some of these stockouts are due to poor leadership, bad management, weak procurement and supply systems etc. But it probably could also be artificially manufactured by the powers that be with external influence purely for commercial gain. Whatever the reason, those advocating for getting to ‘zero new infections and zero deaths’ can continue dreaming if the issue of stockouts is not critically looked into at local, regional and global level.
Every discussion in most sessions highlighted the fact that the cost of delivering treatment is and will remain a challenge. Debates on what are the most innovative ways to finance treatment delivery persist with little interests on remaining focused on commitments by donor and African governments.
So there was and still is much to reflect on. The worry is what will these reflections translate to! Or will the 17th ICASA Conference be yet another multimillion dollar talk shop that will not change the life of the ordinary African person living with HIV!
Bactrin Killingo
Senior Treatment Knowledge Officer ITPC
Co ‐ Chair AFROCAB -
Strong Participation of ITPC and Allies in the Brasilia Consultation on Access to Medicines in the Middle Income Countries
By 2020, most of people living with HIV will be living in the middle-income countries (MICs), where inequality in access is still high. HIV treatment coverage rates observed in regions like Eastern Europe and Central Asia (EECA) and Middle‐East and North Africa (MENA) and other MICs remain among the lowest in the world. Currently, middle income countries are paying high prices for medicines, particularly the newer medicines such as antiretrovirals used for second‐line and third‐line treatment as well as treatment of HIV related co-morbidities such as hepatitis C.
Several countries were represented by official delegates and shared their experiences and challenges to ensure access to medicines. Most of these countries are facing concentrated epidemics, which raises a lot of concerns in terms of accessing key populations. And it also represents challenges in terms of market size, since those groups are often marginalized in many contexts and, therefore, are not considered by the public health policies. Because of their income status, these countries are left from access initiatives by international institutions and pharmaceutical companies aiming to increase access to treatment as well as a diminution of aid by global donors. Trade and intellectual property barriers constitute and additional challenge as most of these countries are members of the World trade organization (WTO) and many have been engaged in free trade agreements with very strict intellectual property provisions that reduce drastically generic competition.
Civil society participation to the consultation was very strong although the number of organizations involved initially was quite low (4 only). ITPC succeeded to mobilize its partner organizations and secure resources to allow key activists at the front of advocacy for access to medicines in their respective countries to attend. Civil society efforts coordinated by ITPC after several weeks of online discussion and teleconferences helped to enrich the conversation on different topics such as markets and prices, intellectual property rights, regulatory issues, voluntary licensing, South-South collaboration and research & development.
Several recommendations pushed by civil society have been successfully adopted by the participants such as developing cooperation mechanisms, e.g. strengthen patentability criteria and bring MICs together to discuss patent law reform to improve access and adopting TRIPS flexibility (compulsory licensing and patent opposition) as first-line strategy for MICs instead of voluntary mechanisms. Participants also agreed on the need of more support and resources for civil society groups working on advocacy for the implementations of TRIPS flexibilities. -
Anti TB Drug Stock- outs
Drug stock outs have dominated many discussions that look at barriers to treatment access for communicable infectious diseases. The main reason for concern when stock outs occur is mostly due to the propagation of drug resistance as a result of failing regimens.
So when the custodian of a taxpaying citizen facing the dangers caused by stock outs commits sins of omission or commission due to laxity, denialism and self-interest, there are bound to be justified reactions from the affected. At the recently concluded 44th International Union Against Tuberculosis and Lung Diseases conference held on the 30th October to the 3rd November in Paris, Treatment Action Group and Global TB activists exposed the inadequacies of governments & their national TB programmes and particularly shamed the Indian government for failing to acknowledge that there are anti TB stock outs in the country. The Indian stock outs are due to a below par supply management and monitoring system that ignores the involvement of civil society and affected communities.
Following this action https://vimeo.com/78345486 also reported in key local media outlets in India http://m.timesofindia.com/india/Indians-booed-at-global-meet-for-genocide-of-TB-patients/articleshow/25148964.cms, it is hoped that the momentum to pressure the Indian government (and for that matter other governments that have broken/absent/suboptimal supply management and monitoring systems) will be maintained by local activists who have over the years demanded for an end to HIV & TB medicine stock outs. Global effort from comrades all over the world will continue providing support to fellow activist demanding for an end to HIV & TB stock outs.
Suffice it to say that humanity will never achieve any Zero targets to HIV and TB if there is no commitment by governments to its citizenry in the spirit of partnership to end stock outs caused by broken or failing supply management and monitoring systems. Denialism needs to end and so does dictatorship, corruption, non-inclusion policies and practice and above all governments need to give meaning to their rhetoric to include civil society in their national responses to HIV and TB.
Bactrin Killingo
Senior Knowledge Officer
ITPC -
Silence equals Death
By Rajiv Kafle
As I proudly sported my ‘Silencio = Mujerte’ t-shirt that morning and was heading towards the conference shuttle that would take me to the Walter E Washington convention center an elderly lady probably in her sixties greeted me warmly and said “I get re-energized and my blood starts to boil every time I see that silence equals death sign you know”. Even before I could ask her about her connections with those three words on my t-shirt from the Mexico AIDS conference 4 years back she added “AIDS activism in the eighties brought us all together and we were angry like hell with our government.” As she romanticize her good old days I just sat their and listened to her with a smile on my face as if to say to her that I am also a part of that great legacy just because I am wearing the t-shirts now.
I am from Nepal one of the many poorly run country in the world and even in my country there are no waiting lists when it comes to access to life saving ARV treatment for people living with HIV. When I came here in the United States to learn that half of the people who need treatment do not have access to these life saving drugs it just didn’t feel right specially because one third of resources that goes in keeping people on treatment in my country comes from US taxpayers. I kept thinking that either the US citizens are too generous and kind or the system here is screwed. I have no doubt that American people are kind and generous but there still remained enough room in my mind to argue that the system is screwed and the silence is killing people.
It’s been almost a month that I am in the US now and there has not been a day that health care is not on the top of the political agenda since I have been here. I don’t know what incorporates the Romney/Ryan health care plan nor I understand the intricacies of the Affordable Care Act but I am simply trying to figure out as to why there is still waiting lists for those needing life saving treatment in this country and moreover why those on the waiting lists are silent.
I am now in New Mexico which is one of the few states which has no waiting lists for people who need treatment and that’s a pretty good news to hear for me coming from Nepal you know. But guess what an old friend of mine who I am visiting here recently was prescribed with (a pretty common diarrhea medicine in my part of the world called) ‘metronidazole’. As I looked into her prescription slip from the doctor it read in rather bold letters that she had saved 25$ because of her insurance in getting those 30 pills for just 10 bucks. I laughed my heart out reading those lines and she asked me what the reason was for this untimely burst. I said ‘are you kiddin me’ as I am catching up with few common phrases here and there – showing her the slip. She asked me what would that cost me in Nepal. “Maybe 60 cents or most of the times nothing because it’s distributed for free under various schemes’ was my answer.
If I were an American voter I’d ask why I am paying more than a dollar for a 2 cent worth pill and why half of the people in one of the richest nation on earth are deprived of life saving medicines. I would certainly not just remain silent and listen to these endless debates as to whose healthcare plan is better.
I personally think that both are crap if these plans would not change anything and people living in one of the richest nation on earth are still deprived of basic healthcare and most ironically a handful of people are making a fortune out of this.
These are decisive times and those of us who pride ourselves in wearing the ‘Silence equals death’ t-shirts should step up our efforts in making our voices heard as we did in the past and more recently during the DC AIDS conference.
And as the lady on the bus reminded me of how powerful these three words are I wanted to share my story to my friends in US who have inspired me time and again to not to remain silent.
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I dedicate this story to my friend Steve Garret who laid the foundation of an outstanding healthcare services for people living with HIV in the state of New Mexico where there is not a single person in the waiting list for access to HIV and HCV treatment.
