The ambition to achieve treatment optimization for people living with HIV could finally be realized – but this World AIDS Day (1 December 2017), activists warn of the creation of a treatment quality gap, where millions may be left behind.
In 2018, treatment optimization may become a reality for many people living with HIV, with the arrival of new drugs which are more potent, yet with lower dosage and fewer side effects, such as key HIV drug dolutegravir (DTG), developed by ViiV Healthcare. DTG-based treatment regimens will improve the quality of life for people living with HIV, encourage more people to initiate treatment earlier, and prevent HIV drug resistance.
However, this optimal treatment will not be accessible for everyone. People living in some middle-income countries, where the majority of people living with HIV reside, are set to lose out because of patents and high pricing set by pharmaceutical companies such as ViiV. Middle-income countries are routinely excluded from access programs and voluntary licenses which focus on low-income countries. Yet several countries classified as ‘middle-income’ can’t afford to foot the bill for overpriced, branded drugs.
Middle-income countries already register lower coverage of HIV treatment. For example, only 24% of people living with HIV are accessing treatment in the Middle East and North Africa region (MENA) and 28% in Eastern Europe and Central Asia (EECA), compared to 60% in southern Africa, and a global average of 53%.
With optimal treatment unaffordable for millions, if patent barriers are not addressed, the treatment gap is now applying not to just to quantity, but also quality. As treatment activists we fear that, while we will see high and lower income countries accessing better quality treatment, people in middle-income countries will continue to use obsolete treatment, contending with the continued side-effects that affect quality of life, discourage people from initiating treatment earlier and increase the risk of developing drug-resistant HIV. Make Medicines Affordable, a global campaign led by ITPC, welcomes the efforts being made to speed up access to DTG based regimens however in order for these initiatives to benefit everyone, we call for the following:
We urge all countries to revise their treatment guidelines, ensuring optimal treatment is recommended.
We call on ViiV Healthcare and the Medicines Patent Pool to revise the voluntary licence for DTG to cover all middle-income countries – explicitly naming each of the countries so the current ambiguity is removed.
We ask generic producers to fast-track registration of their generic versions of DTG in all countries where supply is possible.
Where patent barriers still exist, we urge countries to use their right to exercise the TRIPS flexibilities, including compulsory licences to make sure optimal treatment is available for all.
Are you attending the International Conference on AIDS and STIs in Africa (ICASA) 2017? Check out all the events and activities hosted by ITPC!
SATELLITE SESSIONS
Demand Creation for Differentiated Care – Putting People at the Centre! Monday 4 Dec | 14:45 – 16:45 | Room: Prof FEMI SOYINKA | Hosted by ITPC, ARASA, & IAS
A lively panel discussion on differentiated service delivery and the launch of a new resource titled What Works for Me: Activist Toolkit on Differentiated Service Delivery! Domestic Financing for HIV Fri 8 Dec | 18:30 – 20:30 | Room: Prof NKANDU LUO | Hosted by ITPC & the Global Fund
Community dialogue bringing together government, donors, regional economic bodies, and civil society to discuss the importance of domestic financing to sustain the HIV response.
PLENARY SPECIAL SESSION
Community Observatories: Examples, Successes and Realities Fri 8 Dec | 12:45 – 14:15 | Room: Prof KADIO AUGUSTE
This special session looks at community observatories, highlighting successes and challenges from projects across West Africa – including the Regional Community Treatment Observatory (RCTO-WA)
ORAL PRESENTATION
A Tool to Assess How Friendly to Access to Medicines Your Law is Wed 6 Dec | 18:00 – 20:30 | Global Village | Hosted by ITPC MENA
This presentation will review an assessment of national intellectual property landscapes and their impact on access to medicines in Egypt, Morocco and Tunisia.
GLOBAL VILLAGE & POSTER EXHIBITIONS
Global Treatment Networking Zone Monday 4 Dec – Thursday 7 Dec | Two sessions daily starting at 10:30 & 15:00
Daily sessions provide opportunities for discussion, skills building, and agenda-setting on key treatment access issues – including treatment education, community monitoring, and intellectual property! Updates from the Regional Community Treatment Observatory in West Africa Monday 4 Dec – Thursday 7 Dec | Poster Exhibition Area | Hosted by ITPC partners
—
You can also download the ITPC at ICASA 2017 (PDF) flyer to print and take with you. Available in both English and French!
Featured photo: Community activists protesting ViiV at ICASA 2015 in Harare, Zimbabwe.
Toolkit on Differentiated Service Delivery Launched at Regional Activist Workshop in South Africa.
The What Works for Me: Activist Toolkit of Differentiated Service Delivery was soft launched this week, at a workshop taking place in Johannesburg, South Africa for activists from Asia and southern and east Africa. Developed by the AIDS and Rights Alliance of Southern Africa (ARASA) and the International Treatment Preparedness Coalition (ITPC), with the support of the International AIDS Society (IAS), the Toolkit supports communities to engage in and demand recipient-centered models of care, most specifically differentiated antiretroviral therapy (ART) delivery.
Topics covered in the Toolkit include: understanding the HIV treatment continuum and links to differentiated service delivery; understanding differentiated service delivery and models of differentiated ART delivery; and how to advocate for differentiated service delivery.
Differentiated care is a recipient of care-centered approach that simplifies and adapts HIV services across the continuum to reflect the preferences and expectations of various groups of PLHIV, while reducing unnecessary burdens on the health system. For example, under this approach, “people who are clinically stable on treatment would have a reduced frequency of clinical visits and medication prescribing allowing health service resources to focus on care for people who are ill and require intensive clinical follow-up”
“Over the last year, we’ve heard repeatedly that communities want and need more effective ways of access the treatment they need,” says Wame Mosime, ITPC Director of Global Programs and Advocacy. “This new toolkit not only educates people about their own treatment needs, but empowers them to demand better access – whether that’s through more integrated services, task shifting, or new adherence support initiatives.”
“HIV has become a manageable chronic illness, with people living with HIV understanding how their treatment works and the importance of adherence. This toolkit was developed with the aim of strengthening community engagement and demand for recipient–centred models of care, for delivery of antiretroviral therapy. Services should be provided in a way that suits the daily lives of people living with HIV. This makes adhering to treatment easier and respects a rights-based approach to service delivery,” says Michaela Clayton, Director of ARASA.
Interested? Sign-up here to be notified when the toolkit becomes available for download on December 4, 2017!
In 2003, more than 120 treatment activists from 67 countries gathered in Cape Town, South Africa for the first International Treatment Preparedness Summit (ITPS). The goal of the four-day meeting was to identify ways to strengthen regional treatment education and advocacy efforts to pave the way for the realization of the then, newly introduced “3 by 5” Initiative.
The 2003 Treatment Preparedness Summit was convened at a time when HIV treatment access was very poor, and activists were still grappling with the brunt of the epidemic. Today, we have an opportunity to share stories of our journey and ask salient questions. Fifteen years later, how far have we come? Where are we now? What is the state of our activism today? And, what do we have left to do? On the cusp of this anniversary, these are the questions the HIV movement must answer.
New HIV targets – like UNAIDS 90-90-90 – continue to focus on quantity and the numbers needed to end the epidemic. However, in reigniting the fight for both people’s right to health and universal access to optimal HIV treatment, it is imperative that we purposefully shift the focus to quality.
To this end, ITPC will host a Community Activist Summit on Sunday, July 22, 2018, ahead of the International AIDS Conference (AIDS 2018) in Amsterdam, Netherlands. Using innovative tech-powered panel discussions, campfire-style deliberations, and interactive Q&A sessions, participants will strategize viable approaches and outline concrete next steps needed to effectively advocate for the improvement of:
qualityservices and affordability along the Continuum of Prevention, Care and Treatment (CoPCT);
quality protection of human rights; and
quality engagement of communities (including key and vulnerable populations) throughout these processes.
The Summit is intended for PLHIV and key population activists, civil society and community advocates, program implementers, government officials, and all stakeholders interested in and seeking to influence a global, community-led HIV advocacy agenda.
Interested? Sign-up here to be notified of the latest updates & news!
This week, ITPC South Asia and ITPC LATCA are hosting national workshops on pre-exposure prophylaxis (PrEP) in India and Mexico, respectively. Supported by LINKAGES/FHI 360 and MAC AIDS Fund, the two-day trainings build off of the foundation laid by the Community-led Consultative Think Tank Meeting on Access to and Use of PrEP hosted by ITPC earlier this year.
Together, participants representing civil society, key populations and technical expert groups are engaging in open discussions focused on key considerations of PrEP implementation across key population groups, and the development of national strategies to create better access to PrEP for communities.
“What I liked about this workshop is that around the table are different actors that were not used to working together. It’s given us the basis for discussion. It shouldn’t be the last one” “Our dream is that an official Mexican norm would allow access to PrEP for anyone who wants it” “We need to push for HIV prevention to remain in the hands in the community”
“We’ve seen that once people know what PrEP is, they are interested. But right now there is a huge knowledge gap about it. We need to ensure that people are educated.” “It had been a long time since we did a workshop like this one in Mexico. The role of ITPC-LATCA has been very meaningful” “You have identified the right people to take this forward. Sex workers, MSM, PUD, transgender – we know what our communities need first and foremost.”
The trainings are taking place among a string of other ITPC treatment education trainings happening this quarter, including one earlier this month in Vietnam and a final one will be held in Swaziland in November. At the latter, ITPC will be launching the Key Population Activist Toolkit on PrEP to help communities better understand the most pressing issues on the topic.
GABORONE, Botswana – Nov 1, 2017 – The International Treatment Preparedness Coalition (ITPC) and Prevention Access Campaign (PAC) announced today a groundbreaking partnership that will amplify the Undetectable=Untransmittable (U=U) message among communities of people living with HIV worldwide.
U=U reinforces the public health benefits of antiretroviral therapy (ART), affirming that a person living with HIV on ART with an undetectable viral load cannot sexually transmit HIV. The growing campaign has already been endorsed by more than 450 community partners in 65 countries, and the U=U science confirmed by leading public health bodies including UNAIDS, the U.S. Centers for Disease Control and Prevention (CDC), the European Centers for Disease Control and Prevention (ECDC), and the International AIDS Society (IAS).
“When people in power, like U.S. House Representative Betty Price, are still asking in 2017, if there are ‘any methods, legally, that we could use that would curtail the spread [of HIV]?’ the answer is a bold YES! – provide the medicine needed to be undetectable. This partnership is timely and critical; there is no question that communities should know the science behind what U=U means. This knowledge alone can be life-changing – not only for people living with HIV, but their families, friends, and loved ones,” said Solange Baptiste, ITPC Executive Director.
The collaboration builds on the work of both organizations and will equip activists across the globe to integrate U=U into their on-going advocacy efforts to improve access to optimal HIV treatment. The partnership will enable the U=U message to better reach and be utilized by those who it concerns most: communities.
“The ITPC team and those of us who are a part of the U=U campaign share the same belief in international solidarity among people living with and affected by HIV,” said Bruce Richman, Executive Director of PAC. “With its roots in the Global South and an internationally recognized track record for capacity building and community engagement, ITPC is the ideal implementing partner to empower communities with U=U knowledge and strategies in accurate and meaningful ways.”
The partnership will work in parallel with PAC’s existing partnership with the International Association of Providers of AIDS Care (IAPAC), focused on providing U=U training and education for clinical and allied health professionals to integrate into clinical practice in specialized and primary care settings.
* * *
A copy of this press release (PDF) is available here. Note: An undetectable viral load is typically under 40 copies/ml depending on the diagnostic tests. However, studies show a person living with HIV on antiretroviral therapy (ART) with a viral load of 200 copies/ml or less also cannot sexually transmit HIV. This is called being “virally suppressed.” For the purposes of the U=U campaign and any Prevention Access Campaign materials, the term “undetectable” is used synonymously with the term “virally suppressed,” meaning a person living with HIV with a viral load of 200 copies/ml or less cannot transmit HIV. About ITPC Global
The International Treatment Preparedness Coalition (ITPC) is a worldwide coalition of people living with HIV and community advocates working to achieve universal access to optimal HIV treatment of those in need. Formed in 2003 by a group of 125 HIV activists from 65 countries at a meeting in Cape Town, South Africa, ITPC actively advocates for treatment access in eight regions across the globe. ITPC believes that the fight for HIV treatment remains one of the most significant global social justice issues. For more information about ITPC, please visit www.itpcglobal.com. About the Prevention Access Campaign
The Prevention Access Campaign’s Undetectable = Untransmittable (U=U) campaign is an international community of HIV advocates, activists, researchers, and over 450 community partners from more than 65 countries uniting to disseminate the scientifically supported message that people living with HIV who are on effective antiretroviral therapy with an undetectable viral load do not sexually transmit HIV. For more information about the Prevention Access Campaign, please visit www.preventionaccess.org. For more information
Please contact Trisa Taro, ITPC Program Impact Manager (ttaro@itpcglobal.com).
GABORONE, Botswana – Nov 1, 2017 – The International Treatment Preparedness Coalition (ITPC) and Prevention Access Campaign (PAC) announced today a groundbreaking partnership that will amplify the Undetectable=Untransmittable (U=U) message among communities of people living with HIV worldwide.
U=U reinforces the public health benefits of antiretroviral therapy (ART), affirming that a person living with HIV on ART with an undetectable viral load cannot sexually transmit HIV. The growing campaign has already been endorsed by more than 450 community partners in 65 countries, and the U=U science confirmed by leading public health bodies including UNAIDS, the U.S. Centers for Disease Control and Prevention (CDC), the European Centers for Disease Control and Prevention (ECDC), and the International AIDS Society (IAS).
“When people in power, like U.S. House Representative Betty Price, are still asking in 2017, if there are ‘any methods, legally, that we could use that would curtail the spread [of HIV]?’ the answer is a bold YES! – provide the medicine needed to be undetectable. This partnership is timely and critical; there is no question that communities should know the science behind what U=U means. This knowledge alone can be life-changing – not only for people living with HIV, but their families, friends, and loved ones,” said Solange Baptiste, ITPC Executive Director.
The collaboration builds on the work of both organizations and will equip activists across the globe to integrate U=U into their on-going advocacy efforts to improve access to optimal HIV treatment. The partnership will enable the U=U message to better reach and be utilized by those who it concerns most: communities.
“The ITPC team and those of us who are a part of the U=U campaign share the same belief in international solidarity among people living with and affected by HIV,” said Bruce Richman, Executive Director of PAC. “With its roots in the Global South and an internationally recognized track record for capacity building and community engagement, ITPC is the ideal implementing partner to empower communities with U=U knowledge and strategies in accurate and meaningful ways.”
The partnership will work in parallel with PAC’s existing partnership with the International Association of Providers of AIDS Care (IAPAC), focused on providing U=U training and education for clinical and allied health professionals to integrate into clinical practice in specialized and primary care settings.
* * *
A copy of this press release (PDF) is available here. Note: An undetectable viral load is typically under 40 copies/ml depending on the diagnostic tests. However, studies show a person living with HIV on antiretroviral therapy (ART) with a viral load of 200 copies/ml or less also cannot sexually transmit HIV. This is called being “virally suppressed.” For the purposes of the U=U campaign and any Prevention Access Campaign materials, the term “undetectable” is used synonymously with the term “virally suppressed,” meaning a person living with HIV with a viral load of 200 copies/ml or less cannot transmit HIV. About ITPC Global
The International Treatment Preparedness Coalition (ITPC) is a worldwide coalition of people living with HIV and community advocates working to achieve universal access to optimal HIV treatment of those in need. Formed in 2003 by a group of 125 HIV activists from 65 countries at a meeting in Cape Town, South Africa, ITPC actively advocates for treatment access in eight regions across the globe. ITPC believes that the fight for HIV treatment remains one of the most significant global social justice issues. For more information about ITPC, please visit www.itpcglobal.com. About the Prevention Access Campaign
The Prevention Access Campaign’s Undetectable = Untransmittable (U=U) campaign is an international community of HIV advocates, activists, researchers, and over 450 community partners from more than 65 countries uniting to disseminate the scientifically supported message that people living with HIV who are on effective antiretroviral therapy with an undetectable viral load do not sexually transmit HIV. For more information about the Prevention Access Campaign, please visit www.preventionaccess.org. For more information
Please contact Trisa Taro, ITPC Program Impact Manager (ttaro@itpcglobal.com).
The International Treatment Preparedness Coalition (ITPC) is excited to announce that its community monitoring campaign, formerly known as Treatment Access Watch, is now called Watch What Matters.
The name change – which is effective immediately – reflects an expanded understanding of our work and acknowledgment of the strength and diversity of the entire treatment access movement.
“As activists, we Watch What Matters! This broad call to action leads the way on HIV treatment access, as well as other social justice issues. The work that ITPC has been doing over the last 15 years with our Missing the Target series and community treatment observatories has organically created a larger movement for community-led global accountability.” – Solange Baptiste, ITPC Executive Director
Watch What Matters will continue to gather data on access and quality of HIV treatment globally, using the same unique model that empowers communities to systematically collect and analyze qualitative and quantitative data on these issues.
“We are proud that the Regional Community Treatment Observatory in West Africa (RCTO-WA) is part of this larger movement focused on community monitoring. It speaks to the power of communities to hold governments and others to account and bring solutions to the table. In West Africa, we’ve already seen the impact of this in our 11 countries.” – Alain Manouan, ITPC Community Treatment Monitoring Project Director
The campaign, and the RCTO-WA that it houses, will continue to operate in their current structure and all organizational engagements will remain the same.
If you have any questions regarding this name change, please feel free to contact Alain Manouan (amanouan@itpcglobal.com) or Trisa Taro (ttaro@itpcglobal.com)
On September 18, 2017, at the Funders Concerned About AIDS (FCAA) AIDS Philanthropy Summit in Washington D.C., ITPC Director of Global Programs and Advocacy Wame Mosime and AIDS and Rights Alliance of Southern Africa (ARASA) Deputy Director Felicita Hikuam spoke at the session titled Civil Society-Driven Actions on Sustainability and Domestic Mobilization for HIV and AIDS, co-sponsored by the Robert Carr civil society Network Fund (RCNF) and Open Society Foundations (OSF).
The session placed a spotlight on the sustainability of the HIV response and the impact of the shift to domestic funding:
The Shift to Domestic Funding and What It Means
Domestic investment is increasingly accounting for more of the HIV funding pot in low- and middle-income countries. While this appears to be a promising trend, the shift to domestic funding has been rapid, and in most cases unplanned and void of systematic preparation to ensure previous systems and investment remain intact. The result: insufficient funding levels and competing health priorities – which, as civil society knows, translates to inequity in the HIV response. From a human rights and treatment access perspective, this leaves a significant sub-population inadequately served.
In most settings, external funding is the only source of funding for key populations. Even in countries like Botswana, which has nearly reached the 90-90-90 targets, it is critical key population groups where HIV prevalence and infect rates are highest that are not being supported by national funding.
Civil Society Must Push for Both Increase in Domestic Financing and Global Solidarity for HIV
In 2015 and 2016, with support from the Global Fund through the RCNF, ARASA and ITPC supported partners in Botswana, Malawi and Tanzania to increase their understanding of national and international health funding architectures. This included collaborating with the Centre for Economic Governance and AIDS in Africa (CEGAA) to undertake budget monitoring and expenditure tracking on domestic funding allocated to health, with a focus on HIV-related interventions for key populations.
This process highlighted that investment is needed to increase civil society’s knowledge of national and international funding architecture national and international commitments, national budgets and budgeting processes. The advocacy to increase domestic financing for equitable access to treatment and critical enablers, including protection of rights of key populations needs to be understood in the specific social and legal context of continuing criminalization, stigma, and discrimination.
The Way Forward
Addressing the challenges related to the lack of sustainability and the push to transition domestic funding are many – but both funders and civil society can help by:
Maintaining global solidarity to ensure civil society, national governments, and donors continue to work together. While we gravitate towards domestically sustained programs, we must uphold global accountability.
Influencing the creation and revision of better policies at national levels to redirect investment prioritization to help and guarantee governments create and invest in policies and programs that respond real needs, and therefore better predict their HIV response and budgets. This includes having constructive dialogue at national level about critical considerations to make to ensure we sustain response, negating new infections, and ensure groups that are vulnerable are getting the support that they require.
Recognizing that the HIV response is borderless, and investments in regional and global networks to support cross-border advocacy (as RNCF & OSF are doing) are a necessity.
Revitalizing the shrinking civil society voice and space by supporting and investing in community efforts. This includes funding for advocacy, demand creation, community monitoring, and community-based service delivery (differentiated service delivery).
On Wednesday, October 4, 2017 ITPC Intellectual Property and Access to Medicines Lead Othoman Mellouk addressed the Human Rights Council’s 2017 Social Forum in Geneva, Switzerland, explaining why we can’t stand back while Big Pharma abuse the patent system at the expense of public health:
Translating Principles into Action: Patents, Big Pharma and Access to Treatment
Honorable assistance, Ladies and Gentlemen, I would like to thank the Human Rights Council to give me and my organization the International Treatment I would like to thank the Human Rights Council to give me and my organization the International Treatment Preparedeness Coalition (ITPC) the opportunity to provide our input in this important topic. I would like to start by extending a heartfelt thanks and congratulations to the government of Malaysia which just a few weeks ago translated the principle of access to affordable medicines into action. Malaysia announced the first ever compulsory license on a treatment for hepatitis C – sofosbuvir – the famed $1000 a pill drug sold by US MNC Gilead Sciences as I would like to start by extending a heartfelt thanks and congratulations to the government of Malaysia which just a few weeks ago translated the principle of access to affordable medicines into action. Malaysia announced the first ever compulsory license on a treatment for hepatitis C – sofosbuvir – the famed $1000 a pill drug sold by US MNC Gilead Sciences as Malaysia announced the first ever compulsory license on a treatment for hepatitis C – sofosbuvir – the famed $1000 a pill drug sold by US MNC Gilead Sciences as sovaldi. Malaysia was faced with Gilead Sciences – which represents the “modern” pharma company. Their so-called “responsible” licensing practices first received global acclaim through the Medicines Patent Pool when they announced a voluntary license for HIV treatment covering over 80% of people living with HIV for tenofovir. Their sofosbuvir voluntary license which is outside the Pool covers over 100 low and Malaysia was faced with Gilead Sciences – which represents the “modern” pharma company. Their so-called “responsible” licensing practices first received global acclaim through the Medicines Patent Pool when they announced a voluntary license for HIV treatment covering over 80% of people living with HIV for tenofovir. Their sofosbuvir voluntary license which is outside the Pool covers over 100 low and middle-income countries. Hidden by these numbers and statistics is the dangerous games of haves and have-nots that Gilead plays. Leaving Malaysia out of the sofosbuvir license they engaged in never-ending price negotiations with the government and reportedly refused to agree to a price lower than USD 12,000 for a 12 week course of treatment while generics are selling for USD 100. Gilead had the upper hand in the negotiations with its patent in Malaysia. Like many other developing countries, Malaysia as a member of the World Trade Organisation signed the Agreement on Trade Related Aspects of Intellectual Property Rights (TRIPS). With TRIPS, all developing countries in the WTO are today granting patents on pharmaceutical products for 20 years. At the beginning of the HIV epidemic the devastating impact of such patent monopolies on lives and health was clear for all to see. Patent holding companies would not offer prices lower than USD 10,000 per person per year even as entire generations were wiped out. With generic production prices crashed to less than a 30 cents a day. Today generics for HIV and HepC are available but not for everyone: Like Malaysia, so-called middle income countries are routinely excluded from licences and pricing arrangements; the dolutegravir pricing arrangement recently announced by UNAIDS is a case in point. It is baffling that even with the involvement of UN and other international agencies the potential for affordable dolutegravir excludes key middle-income countries that are seeing an increase in HIV incidence. In fact, by 2020, the vast majority of people living with HIV (87%) will be in high- and middle-income countries. Middle-income countries are home to almost half of the world’s population, and have a large and growing share of HIV infections (62%). They have even lower rates of antiretroviral treatment coverage than low-income countries. One third of people living in middle-income countries survives on less than US$2 per day. Almost 6 million people in middle-income countries (excluding sub-Saharan Africa) need antiretroviral treatment. However, less than a third are currently able to access it. On 20 September, Malaysia’s Health Minister said enough to Gilead’s dangerous games by using their right under the TRIPS Agreement to issue a compulsory license. And we hope other countries will do the same or use other TRIPS flexibilities and use their rights as governments to turn principles into actions when faced with unjust patents and the abuse of patent monopolies. The path to Malaysia’s CL was paved of course by the determined hard work and actions of local CSOs who first presented a petition to the Health Ministry for a Compulsory Licence to be issued on sofosbuvir already in 2015. Challenging the unethical, immoral and, I would argue, illegal actions of big pharma in keeping affordable generic medicines out of the hands of patients has become a critical part of the work of many CSOs and community-based groups. Even though we are no match for money, legal or lobbying muscle of big pharma, we challenge, often successfully their patents on key medicines in several middle-income countries:
During last couple of years, ITPC’s consortium (working in 4 MICs: Argentina, Brazil, Thailand and Ukraine with the support of UNITAID) challenged up to 14 unmerited patents on HIV and Hepatitis C drugs, we file compulsory license petitions, we campaign – we critique unjust licensing and pricing exclusions, we engage in direct action highlighting the human rights violations of companies whether it is in a rally or at an international conference.
Our impact during the last two years on HIV drugs alone generated annualized budget savings of 549 M$ in the four countries.
What is interesting of course is that when community and public interest groups criticise companies for their divide and conquer policies on licenses or price discounts, the almost immediate response is that it is the governments that should be criticised instead. Companies will be companies of course. How can we expect that even in the area of life saving or life prolonging products that they should be driven by anything other than profit and PR. And governments after all, have full rights, like Malaysia within the WTO framework to get access to generic medicines. So as CSOs we are told we should direct our anger and our actions at the governments, not so much at the companies. Right. So let us see what does happen when governments exercise these rights, when CSOs file legal interventions to challenge drug patents. In Brazil and Argentina, both countries also always excluded from voluntary licenses and price discounts, safeguards in their patent laws are designed to prevent unjustified patents and evergreening – the tactic used by big pharma to make small, obvious changes to older drugs so that they enjoy exclusive control of those drugs for far longer than 20 years. The laws of Brazil and Argentina prevent such unjustified patents from being granted and have been used successfully by local CSOs to challenge patents on HIV medicines. Of course both Brazil and Argentina are facing now legal challenges to these safeguards from big pharma. The lack of global condemnation of big pharma’s actions in Brazil and Argentina is extremely worrying. Local community based groups and CSOs like FGEP in Argentina and ABIA in Brazil are courageously fighting this legal nightmare but solidarity it seems is now also defined by World Bank classifications. These legal challenges to public health safeguards in the patent laws of developing countries are backed up by threats of trade sanctions from developed countries like the United States which through its annual 301 report names and shames countries that do not grant US style patents to big pharma. And to well and truly close the legal paths that governments have to access generic medicines by using TRIPS flexibilities, developed countries are engaged in a record number of trade negotiations with IP demands far in excess of the WTO or TRIPS-plus demands. The EU is demanding data exclusivity, a whole new form of exclusivity on medicines in its free trade agreement negotiations with MERCUSOR which includes Brazil and Argentina, my country Morocco and our neighbors in Tunisia. EFTA in their FTA negotiations with India are attempting to overturn or water down India’s critical evergreening safeguard that has kept key HIV, cancer, heart disease and other medicines off patent in the pharmacy of the developing world. The Trans-Pacific Partnership Agreement, that 11 countries are still trying to revive even without the US features some of the worst TRIPS-plus provisions ever seen in any FTAs. While Japan and South Korea are attempting to impose these provisions on three major generic producing countries – China, Thailand and India in the Regional Comprehensive Economic Partnership (RCEP) negotiations. In all this, developed countries are ultimately acting by and on behalf of big pharma. So we respectfully disagree with those who believe our actions, advocacy and campaigns should only be directed at our governments. We do and will continue to hold our governments accountable. We will advocate and campaign against developed country FTAs that threaten global production in the South. But our governments’ actions and inactions are strongly influenced and challenged by the enormous power of multinational pharma companies. The Right to Health requires that our governments, domestically and internationally protect, promote and fulfill this right, including access to medicines to all who need it. Instead, we see our governments now acting as negotiators and regulators. From citizens and patients, we are now consumers and markets. A market to be profited from. A market to be divided. This has been inexorable pull and result of the WTO-world view that has strengthened the control of corporations on our medicines. An ongoing effort within the UN to draft a framework holding Transnational Corporations accountable for human rights violations is something that now deserves our attention if we are to ensure that the lives and health of people are no longer held hostage by the profits and PR of a company. To turn principles into actions, we also need a stronger international and national rights framework for a paradigm shift; where solidarity and access to medicines is not dependent on a World Bank classification; pharma greed is not justified in any country – high income, middle income or low income. Two days ago, the world celebrated the birthday of Mahatma Gandhi who taught us that Science without Humanity and Commerce without Morality are sins. I think it is appropriate to end with his words in the hope that it will remind us of a crucial principle that has been buried along with the right to health in debates about GDPs, percentages and statistics: “I do not believe in the doctrine of the greatest good of the greatest number. The only real, dignified, human doctrine is the greatest good of all.”
After 14 years of activism within the HIV treatment movement, ITPC Treatment Education Lead Bactrin Killingo is retiring.
Official as of September 1, 2017, Bactrin’s leaving marks the end of an era for ITPC. He was in attendance at the International Treatment Preparedness Summit in Cape Town, South Africa in 2003, where ITPC was founded, and has been a part of the organization ever since.
“It has been an honor being part of the movement. I have enjoyed advocating for various aspects of HIV treatment access over the years. It has been a joy watching ITPC become what it is today.”
ITPC has benefited from his innovative training style – which helped to pioneer the ITPC Advocacy for Community Treatment (ACT) Toolkit and the Community Demand Creation Model – and from his breadth of knowledge, which has been a source of inspiration to us all.
From both a regional and global perspective, Bactrin’s departure will be felt across all treatment access initiatives. In the last year alone, he led the development of three toolkits and conducted more than two dozen trainings and workshops in Asia, Africa, and Latin America and the Caribbean – building knowledge and creating demand for routine viral load testing, differentiated service delivery, and PrEP. He will be greatly missed by partners, allies and colleagues for his long-standing work with ITPC and as a respected global HIV treatment activist.
“Bactrin is one of the most respected names in HIV treatment education. Though he comes from a medical background, he can simplify all the technical jargon into a community language. That is how and where he stands apart from the rest. I am going to miss him. Jambo, my friend!” – Loon Gangte, ITPC South Asia Regional Coordinator.
“How I see it, this gives others the opportunity to take on the baton and keep the movement going. I have never had more confidence in the future of activism and the role ITPC will play in it.”
While together at IAS 2017 Paris, ITPC colleagues – including staff, board members, and founders – celebrated Bactrin’s retirement from active HIV treatment advocacy and expressed our appreciation for his years of service.
“Bactrin is a fearless advocate, a humble teacher, caring doctor and a lifelong friend. He will be sorely missed and be impossible to replace,” says ITPC Executive Director Solange Baptiste, who has worked closely with him since his start at ITPC, where he started as the Program Manager for Africa under the HIV Collaborative Fund. “It’s hard to imagine ITPC without him. He’s been involved in so much of what we’ve accomplished over the last nearly fifteen years. But because of what he’s imparted to the team – to the organization as a whole – there’s no doubt that we will take his legacy forward.” – Gregg Gonsalves, ITPC Global Advisory Board Chair.
Bactrin will continue to be involved with ITPC in other ways and he looks forward to continued work in the treatment access movement. For now, the entire ITPC family wishes Bactrin well as he starts a new chapter in his life.
To our dearest Bactrin: Thank you. We are forever indebted to you for your vision and commitment to #TreatPeopleRight!
Helen Etya’ale, ITPC’s Program Coordinator, shares her reflections from the recent Intergenerational Summit on Positive Youth Leadership and what the HIV advocacy movement looks like through the eyes of youth leadership.
August 12th is International Youth Day. In light of that, I can’t help but think back on my recent experiences and observations from the Intergenerational Summit on Positive Youth Leadership – which highlighted, in a very real way, the voices of young people living with HIV (YPLHIV). It’s a commonly used phrase: “today’s youth are the future leaders of tomorrow”. So, when faced with the leaders of YLPHIV networks from around the world gathered together in this Summit, it is fitting to characterize this as a meeting of those currently championing the plight of YLPHIV but also those poised to becoming strong players in the future of the HIV response.
The Summit was the chance to ask some important questions: What does a youth-led HIV response actually look like? How supported are global and national YLHIV networks? How are we equipping leaders of PLHIV networks to best support their peers and make a difference in their communities?
Several responses arose, but there was one that clearly emerged: by giving them a seat at the table. Young people may be young in age but are often carrying responsibilities beyond their years. Anyone who has transitioned into adulthood knows what it is like to be an adolescent, a young adult. While experiences may vary worldwide, this is without a doubt a time of change, of navigating through transitions, dealing with obligations at work/school, figuring out one’s future – which alone can be a challenging enough.
As YPLHIV actively involved in their networks, in addition to managing their individual responsibilities, these youths dedicate much of their time and energy advocating for the needs of their peers. Running a YLPHIV network goes beyond simply providing peer support and carrying out advocacy activities but also involves more demanding tasks, such as establishing clear and transparent financial procedures for the organization, implementing monitoring and evaluation systems, complying with local registration and legal requirements and establishing and maintaining solid governance structures. What’s even more remarkable is the breath of advocacy and peer support activities carried out by YPLHIV, many of whom operate with little to no resources – and in often tough sociopolitical environments.
So what’s clear is that being young is not synonymous with inexperience or lack of knowledge. Given a seat at a table, YLPHIV have the capacity to speak knowledgeably about the issues that concern them. Some may even hold the key to innovative ways to respond to the needs of their peers. A YLPHIV from Uganda, for example, shared how they use a WhatsApp group to track ART stock outs at health centres and bring these to the attention of district level health officials for follow-up and action.
Despite these evident capacities, the challenges of running a YLPHIV are not to be minimized. With the requirements from donors or other partners to maintain strong organizational structures, YLPHIV are regularly faced with the competing demands of both meeting these requirements and remaining responsive to the needs of their communities.
YLHIV networks have real needs, and with targeted financial and advisory support, can be empowered to achieve their objectives. Thus, investing in the future of an HIV response also implies concretely building the capacity of YLPHIV networks. Trusting that they know what to do, and providing them with the required support to do so.
It is true that there may not be any simple or blanket solutions. But a good place to start is to listen. Youth often still face great difficulties in having their voices heard – but their presence and potential to be powerful agents of change in their communities cannot be undermined. Looking back on this Summit is a welcome opportunity to raise the profile of YLPHIV voices of and a continued reminder that, in the strive towards the end of HIV, YLPHIV cannot be left behind.
—- About the meeting The Intergenerational Summit on Positive Youth Leadership, organized by the Adolescent Treatment Coalition (ATC) was held last 19-20 June 2017 in Cape Town, South Africa. The summit brought together representatives of youth networks working with young people living with HIV and young key populations globally—operating in countries such as Zambia, Philippines, Uganda, India, Argentina, Brazil and Ukraine, among others. A member of the ATC, ITPC was engaged in the Summit as a support organization. Under the wider umbrella of community advocacy for HIV treatment access, ITPC is committed to raising the profile and advocating around the specific treatment access issues affecting children and adolescents living with HIV. ITPC is, thus, uniquely positioned as a resource, providing effective advocacy tools and resources to raise awareness and trigger action—to ensure that YLPHIV are not forgotten in the HIV response.
To find out more about the Adolescent Treatment Coalition and ITPC’s involvement, visit their website. Photo by Jennifer Bruce/UNAIDS (2014).