English – Page 16 – ITPC Global

U=U Unites with ITPC to Improve the Lives of People Living with HIV

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).

ITPC Global

1 Nov 2017

Press
U=U Unites with ITPC to Improve the Lives of People Living with HIV

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).

ITPC Global

1 Nov 2017

Press

Prevention Access Campaign, U=U, Undetectable = Untransmittable
ITPC’s Treatment Access Watch is now "Watch What Matters"

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)

ITPC Global

24 Oct 2017

Updates

community monitoring, Community Treatment Observatory, Watch What Matters
Civil Society Must Participate in Domestic Funding Dialogues – Here’s How
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).
You can watch the full session recording here.

Want to know more? Check out our work on health financing, community monitoring, and treatment education.
ITPC Global

6 Oct 2017

Commentaries

civil society response, domestic funding, Funders Concerned About AIDS
High-, Middle- or Low-Income: Pharma Greed is Not Justified in Any Country!
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.”

You can see more of what was said over on Twitter via our Make Medicines Affordable campaign
ITPC Global

4 Oct 2017

Commentaries

access to medicines, Human Rights Council, intellectual property, Othoman Mellouk
ITPC honors long-time HIV activist, Bactrin Killingo, as he retires

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!

ITPC Global

5 Sep 2017

Updates

Bactrin Killingo, retirement, treatment education
The Future of the HIV Response Through the Eyes of Youth Leadership

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 12^th 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).

ITPC Global

10 Aug 2017

Commentaries

Adolescent Treatment Coalition, Intergenerational Summit, YLHIV, youth
Civil Society Leaves Important Mark at IAS 2017

On 22-26 July 2017, ITPC Global, Regional Directors from ITPC LATCA and ITPC MENA, and representatives from ITPCru were in Paris, France for the 2017 International AIDS Society Conference on HIV Science (IAS 2017). With support from the Bridging the Gaps initiative, we were able to ensure treatment access issues – particularly as they affect key populations – were brought to the center of an otherwise strictly scientific conference.
Joined by activists from across the globe, here is what we did to ensure visibility and action on HIV treatment access:

“Last month WHO added dolutegravir to the Essential Medicines list, but because ViiV’s access policy EXCLUDES middle- income countries, millions of people are left without access to it!”

ITPC IP & Access to Medicines Lead Othoman Mellouk led activists in action against ViiV Healthcare. The group marched through the conference center and stormed ViiV’s exhibition booth to demand a change in the corporation’s restricted voluntary license and poor transparency practices!

Photo ©IAS/Steve Forrest/Workers’ Photos

“When you meaningfully invest in communities, you can do more and you can do better!”

ITPC Executive Director Solange Baptiste spoke at the IAS 2017 Official Press Event on Impacts of Investing in HIV highlighting the unintended consequences of the shift to domestic funding and why community investment and strengthening is critical.

“We pledge to remember… We pledge to hold governments, donors, and service providers accountable for the care that each person living with HIV needs… We pledge to be innovative, unconventional, and inconvenient in our approaches to end AIDS!”

Activists stood up and honor Prudence Mabele and Mark Wainberg at the IAS 2017 opening ceremony. Sibongile Tshabalala gave empowering remarks on the legacy of the two leaders.

Photo ©IAS/Steve Forrest/Workers’ Photos

“Where is France? Where is Macron? President Emmanuel Macron, DON’T make HIV great again!!”

Activists shamed and denounced the French Minister of Health and President Emmanuel Macron at the IAS 2017 opening ceremony in response to French policies that cut budgets, reduce development assistance funding, and threaten the human rights of key populations!

Copyright: Marcus Rose/IAS

“Let’s invest in platforms that bring communities and civil society together, and give them the space at AIDS 2018”

ITPC Director of Global Programs Wame Mosime, on the IAS panel looking ahead at AIDS 2018, discussed the achievements and challenges in the international HIV response ahead of the next IAS conference in Amsterdam. To her point, ITPC hopes to host a pre-conference event next year. Stay tuned for details!

Copyright: Marcus Rose/IAS

“Women with HIV are not able to prevent mother-to child transmission. They have to choose whether to breastfeed their babies & transmit HIV or let them starve to death.”

Venezuelan activist Jesus Aguais took the stage at the plenary session to call for urgent global solidarity for Venezuela. The country has been left behind, with 80% of people living with HIV without treatment.

“Civil society can take direct actions – like patent oppositions, which are already making an impact in countries like Argentina, Ukraine, Russia, and Thailand.”

ITPCru Intellectual Property Lead Sergey Golovin (center) spoke on a panel on the affordability of drugs, highlighting case studies from Eastern Europe and Central Asia.

“Although treatment is free for most people in the Dominican Republic, other expenses can be a barrier to access and retention to HIV care and treatment.”

ITPC LATCA Regional Director Alma de Leon (center) presented her abstract on the results of a community-based study on out-of-pocket expenditures associated with HIV treatment and care.

“Gilead Sciences is funding this conference and making a lot of positive public relations, but we all know that its pricing practices leave millions of people without access to lifesaving treatment!”

ITPC IP and Access to Medicines Lead Othoman Mellouk delivered the community address at the closing plenary. Read the full statement here!

To see more of the action, check out our Facebook and Twitter #IAS2017

ITPC Global

4 Aug 2017

Our Impact

advocacy, IAS 2017, Paris, treatment access
HIV Activists Denounce ViiV for Denying 3.5 million People Access to Optimal Treatment

Today, Monday, 24 July 2017, during the 9^th International AIDS Conference on HIV Science in Paris (IAS 2017), HIV treatment activists from around the world collectively blocked access to ViiV Healthcare’s promotional booth and stormed its presentation to physicians.
The action, which included taping off ViiV’s booth, to deny access to conference delegates, highlights the company’s access policy in middle-income countries, preventing millions of people from accessing its drug: dolutegravir.
Initially considered for people failing on HIV treatment, dolutegravir is now also recognized as the most optimal drug available today for patients newly initiated on treatment, given its safety, efficacy, and high barrier to resistance.
A recent forecast analysis^[1] predicts dolutegravir to become a major component of HIV treatment regimens by 2025 with millions of people in need. Last month, the World Health Organization (WHO) added the drug to its list of Essential medicines (June 2017). However, ViiV’s access and pricing policy, based on greed and exorbitant profits, excludes many middle-income countries.
In 2014, ViiV signed a voluntary license agreement with the Medicines Patent Pool to allow generic production of the drug in, mainly, low-income countries: “Such a licence is a smokescreen that hides an aggressive market monopoly on key HIV high burden middle-income countries such as Thailand, China, Columbia, Khazakhstan, Algeria, Malaysia, Moldova, Peru and many others, where ViiV promised case-by-case flexible pricing that reveals today to be a real greed,” said Chalermsak Kittitrakul from AIDS Action Foundation in Thailand, a country left behind from the licence.
While generic manufacturers are now entering markets with a cost of $60 per person per year, which is expected to reduce even further to $40, the few examples of ‘discount’ prices offered by ViiV and made public include $1,003 in South Africa and $2,317 for Belarus.
“What’s significant is that even at $60 or less, the drug is still profitable. This shows just how excessive ViiV’s offered prices tags are,” says Othoman Mellouk, Intellectual Property and Access to Medicines lead at the International Treatment Preparedness Coalition (ITPC). “We should also keep in mind that these prices are for dolutegravir only, and the cost of the additional ARVs needed for a treatment regimen must be factored into the overall price of treatment.”
“The drug is important for millions of people living with HIV. ViiV needs to adjust to the new reality that dolutegravir is needed by all people living with HIV and not only those failing treatment. The drug should be affordable and accessible for everyone and quickly,” says Solange Baptiste, ITPC Executive Director.
Call to action for ViiV
The activists are calling on ViiV to reconsider the geographical coverage of its voluntary licence to ensure access to generic versions of the drug in all low and middle-income countries. Also to speed-up registration of dolutegravir in all countries and revise its pricing policy to adapt to the reality, and to be both quick and transparent about doing so.

***

Download the press release (PDF) here.
About ITPC
The International Treatment Preparedness Coalition (ITPC) is a worldwide coalition of people living with HIV and community advocates working to achieve universal access to optional 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.
Media contacts:
Trisa Taro, ITPC Program Impact Manager
ttaro@itpcglobal.com
+1 909 720 0324

Othoman Mellouck, ITPC IP and Access to Medicines Lead
omellouk@itpcglobal.com
+212 666 45 28 11

Additional info:
High quality photographs from the action will be made available for immediate use. These can be downloaded via the following link: http://bit.ly/2uVINzT . If you have any issues accessing photos or need information for captions, please contact Trisa Taro (listed above).
For more information on dolutegravir and other campaigns to ensure access to medicines, visit ITPC’s Make Medicines Affordable website.
The Roadmap Special Edition Report on Dolutegravir (DTG), published by I-MAK is available here: http://www.i-mak.org/roadmap/. The aim is to equip stakeholders with current clinical, cost, and patent information to inform decision-making about the best strategies to expand currently limited access to DTG. This report therefore expands on the information provided in the original Roadmap.
^[1] http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0164619

ITPC Global

24 Jul 2017

Press

access to medicines, dolutegravir, DTG, IAS 2017, make medicines affordable, Othoman Mellouk, ViiV Healthcare
Protecting Access to Medicines in India and Beyond
Why millions of people around the world are counting on India to protect them against harmful provision in the Regional Comprehensive Economic Partnership (RCEP) Trade Agreement

PRESS RELEASE

Hyderabad, 24 July 2017 – The Regional Comprehensive Economic Partnership (RCEP) is a free trade agreement that has been in negotiations since 2012, between 16 countries – including Australia, China, India, Japan, New Zealand, and the Republic of Korea. Because of the countries it represents, it will cover nearly 50% of the world’s population – including the most vulnerable, marginalized and impoverished.

A leaked draft of the RCEP’s negotiating text on intellectual property (IP) and investment reveals proposals from Japan and South Korea that could undermine access to affordable medicines and medical innovation across the Asia Pacific region. As the next round of RCEP negotiations start in Hyderabad today, the International Treatment Preparedness Coalition (ITPC) and its allies around the world are calling on the involved countries to drop four key provisions in the trade agreement that will increase market monopolies for pharmaceutical corporations and block access to affordable medicines.

As the next round of RCEP negotiations start in Hyderabad today, the International Treatment Preparedness Coalition (ITPC) and its allies around the world are calling on the involved countries to drop four key provisions in the trade agreement that will increase market monopolies for pharmaceutical corporations and block access to affordable lifesaving generic medicines“People living with HIV – many of whom rely on generic HIV drugs – have seen time and again how access to medicines is undermined when trade agreements include provisions that limit access to medicines,” cautioned Solange Baptiste, ITPC Executive Director. “ITPC welcomed the recommendations of the UN Secretary-General’s

“People living with HIV – many of whom rely on generic HIV drugs – have seen time and again how access to medicines is undermined when trade agreements include provisions that limit access to medicines,” cautioned Solange Baptiste, ITPC Executive Director. “ITPC welcomed the recommendations of the UN Secretary-General’s High Level Panel on Access to Medicines for countries to make full use of existing public health safeguards in trade and to reject measures beyond this. We expect RCEP countries to heed this advice, reject these provisions, and protect access to medicines for the 3.5 billion people living in RCEP countries, as well as the millions more worldwide.”India has been a leader in making use of these public health safeguards and resisting India has been a leader in making use of these public health safeguards and resisting

India has been a leader in making use of these public health safeguards and resisting expansion of monopolies that threaten access to affordable medicines. As a result, the Indian generics industry has been able to play a crucial role in the revolutionary scale up of HIV treatment by ministries of health around the world – particularly in low- and middle-income countries. As people living with HIV continue to lack of access to new drugs to treat coinfections, such as tuberculosis and hepatitis C, India’s ability to provide low-priced generics can save lives. This capacity, however, will be restricted if India commits to the current provisions included in the RCEP trade agreement.

“Millions of people globally are counting on India to continue to stand firm and resist dangerous provisions that represent a matter of life and death for those in need of treatment,” said Loon Gangte, Regional Coordinator of ITPC South Asia. “India has been through this before with the EU-India trade agreement where similarly harmful provisions undermining access to medicines were either withdrawn or dropped. The country needs to stand firm again!”

***

Download the press release in PDF here

Editor’s Notes:
This week ITPC expressed these concerns in a letter to India’s Minister of Health, as well asto Indian Ambassadors in Russia, Guatemala, Kenya, Morocco, Botswana, and USA (New York, Washington D.C.).

The UN Secretary-General’s High-Level Panel on Access to Medicines’ report was published in September 2016 and subsequently endorsed by then-UN Secretary-General Ban Ki Moon. The report makes recommendations to address the “policy incoherence between the justifiable rights of inventors, international human rights law, trade rules and public health in the context of health technologies.”

UPDATE: August 3, 2017

Local media in India and the Asia-Pacific region continues to cover this story.
UPDATE: October 26, 2017

Local media in India report that India will stand to oppose provisions in the RCEP that could hinder global access to generic drugs.
- India to oppose anti-generics proposals at RCEP meet: “According to people attending the negotiations, India has not agreed to provisions like extended patent terms and data exclusivity. Data exclusivity is a form of legal monopoly protection for a drug, over and above patent protections. South Korea and Japan have been pushing for proposals to extend drug and vaccine patent terms, a move that is likely to inhibit competition in countries like India.A leaked negotiating text of RCEP indicates that India’s ministry of commerce, which is the chief negotiator, is resisting many aspects of the Japanese and Korean demands for higher intellectual property rights (IPR) standards. The measures go beyond what is required by the World Trade Organization (WTO) Agreement on Trade-Related Aspects of Intellectual Property (TRIPS), and are called TRIPS-plus provisions.”
ITPC Global

23 Jul 2017

Press

access to medicines, ARVs, generic, India, intellectual property, ITPC South Asia, TRIPS
Civil Society and Allies Push Against IP Barrier in Guatemala
Last week, ITPC Latin America and the Carribean (ITPC LATCA) and allies began urging Guatemala and the international community to expand HIV treatment coverage through the use of compulsory licensing for the Lopinavir 200mg / Ritonavir 50 mg fixed-dose combination tablet.

What is compulsory licensing? According to the Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS), patents are granted by governments to reward innovators. However, the government retains the right to suspend patent protection when needed. The government can give itself, or a third party, the right to manufacture generic medicines to protect the health of its citizens. This procedure is called a compulsory license. Compulsory licensing remains one of the most effective strategies to reduce the price of patented medicines.

On July 10, 2017, the coalition of entities that defend human rights of people living with HIV in Guatemala and strategic allies united by access to treatment in the country released a press statement (Spanish, PDF) outlining the intellectual property (IP) safeguards that must be employed in order to increase both affordability and availability of ARVs. The press release was followed by a press conference, held on July 13, 2017.
Alma de Leon, Regional Director of ITPC LATCA, shared the key takeaways:
- Lopinavir 200 mg + Ritonavir 50 mg tablet is a drug of high therapeutic impact as it stops the progression of infection and can be used in the prevention mother-to-child transmission.
- In Guatemala, this fixed-dose combination has patent protection which makes it unaffordable. It is currently purchased between 3-4 times more expensive than in neighboring countries.
- Medication patents limit access to health. In Guatemala, the patient rights are protected for 20 years or more, ceding exclusivity and setting prices favorable to the industry and preventing free marketing and competition.
- To overcome this, governments can grant compulsory licenses on grounds of public interest and, in particular for reasons, of national emergency, national security or public non-commercial use, to remedy any anticompetitive practice.
- ITPC LATCA and others have requested a compulsory license on these grounds, to treat the 2,238 people using the combination of Lopinavir 200 mg + Ritonavir 50 mg tablet, as well as to improve the health of more than 15,000 people diagnosed who do not yet have ARV treatment to safeguard their lives.
Activists from the local, national, regional and international levels are urged to join the present request that seeks to improve the quality of life of people with HIV and the general population of Guatemala through the use of the TRIPS flexibility by issuing compulsory licenses – which are recognized in the legislation of intellectual property in Guatemala.

Check out ITPC’s Make Medicines Affordable campaign to learn more about intellectual property and access to medicines!
ITPC Global

19 Jul 2017

Our Impact
ITPC at IAS Conference on HIV Science 2017

Join ITPC at IAS 2017 – Paris

Join ITPC’s global team and regional directors at the International AIDS Society’s 9th Conference on HIV Science (IAS 2017) in Paris from 23 – 2016 July.
We are co-hosting and participating in many sessions throughout the week. Check out our downloadable flyer (PDF) below for our full programme!

Follow us on Facebook and Twitter to see all the action as it happens!

ITPC Global

17 Jul 2017

Updates

AIDS Conference, Bactrin Killingo, differentiated models of care, HCV, IAS 2017, ITPC LATCA, Othoman Mellouk, Solange Baptiste

The Shift to Domestic Funding and What It Means

Civil Society Must Push for Both Increase in Domestic Financing and Global Solidarity for HIV

The Way Forward

Want to know more? Check out our work on health financing, community monitoring, and treatment education.

Translating Principles into Action: Patents, Big Pharma and Access to Treatment

You can see more of what was said over on Twitter via our Make Medicines Affordable campaign

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.

“Last month WHO added dolutegravir to the Essential Medicines list, but because ViiV’s access policy EXCLUDES middle- income countries, millions of people are left without access to it!”

“When you meaningfully invest in communities, you can do more and you can do better!”

“We pledge to remember… We pledge to hold governments, donors, and service providers accountable for the care that each person living with HIV needs… We pledge to be innovative, unconventional, and inconvenient in our approaches to end AIDS!”

“Where is France? Where is Macron? President Emmanuel Macron, DON’T make HIV great again!!”

“Let’s invest in platforms that bring communities and civil society together, and give them the space at AIDS 2018”

“Women with HIV are not able to prevent mother-to child transmission. They have to choose whether to breastfeed their babies & transmit HIV or let them starve to death.”

“Civil society can take direct actions – like patent oppositions, which are already making an impact in countries like Argentina, Ukraine, Russia, and Thailand.”

“Although treatment is free for most people in the Dominican Republic, other expenses can be a barrier to access and retention to HIV care and treatment.”

“Gilead Sciences is funding this conference and making a lot of positive public relations, but we all know that its pricing practices leave millions of people without access to lifesaving treatment!”

To see more of the action, check out our Facebook and Twitter #IAS2017

Why millions of people around the world are counting on India to protect them against harmful provision in the Regional Comprehensive Economic Partnership (RCEP) Trade Agreement

Check out ITPC’s Make Medicines Affordable campaign to learn more about intellectual property and access to medicines!

Join ITPC at IAS 2017 – Paris

Follow us on Facebook and Twitter to see all the action as it happens!