The project, which is supported by UNITAID, will take place over the next three years and aims to remove patent barriers to generic competition in Argentina, Brazil, Ukraine and Thailand by reforming patent laws, challenging undeserved patents and advocating for the selective use of compulsory licenses.
The three-day meeting was held at the Merlin Hotel in Rio de Janeiro, Brazil and was dedicated to reviewing project plans, sharing targeted intervention strategies and team building.
The meeting’s 22 participants are members of the project’s global consortium led by ITPC. The consortium includes key organizations from each of the four target countries: the Fundacion Grupo Efecto Positivo (Argentina), Associacao Brasileria Interdisciplinar de AIDS (Brazil), AIDS Access Foundation (Thailand), the All-Ukrainian Network of PLWH (Ukraine); as well as the Initiative for Medicines, Access & Knowledge (I-MAK) – a technical partner.
The consortium looks forward to sharing further updates in the near future!
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ITPC and Partners Meet to Launch New Project on Access to HIV treatment in Middle-income Countries
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Take Action
Sign ITPC’s petition to Gilead
A recent decision by India’s Patent Office rejecting one of Gilead’s key patents for sofosbuvir is an important step for treatment activists. But Gilead is using every trick in the book to get the decision reversed, including lobbying the Indian Government.
Sign our petition today to expand Hep C treatment! -
ITPC and ARASA host workshop on Intellectual Property and Free Trade Agreements for activists in Johannesburg
News summary
On November 24-28, 2014, the International Treatment Preparedness Coalition (ITPC) and the AIDS and Rights Alliance for Southern Africa (ARASA) held a joint workshop training, titled Community Involvement in Access to Affordable HIV Treatment: Focus on the Influence of Intellectual Property & Free Trade Agreements, at the Aviator Hotel in Johannesburg, South Africa.
The four day training aimed to equip human rights and treatment activist leaders with skills, tools, resources and opportunities to influence decisions-makers in their countries to increase access to optimal treatment for HIV and co-infections with an emphasis on intellectual property and trade intervention using a human rights framework.
The workshop’s 14 participants, who came from across the African region, reviewed the basics of HIV and HIV treatment, discussed human rights and intellectual property as they relate to access to HIV treatment, and developed advocacy plans for country access to affordable HIV treatment. Training sessions were developed and adapted from ITPC’s Advocacy for Community Treatment (ACT) Toolkit.
Following the workshop, ITPC and ARASA issued a closed request for proposals to the participants. The available grants will support country-level advocacy for increased community access to affordable optimal HIV treatment. The proposed work will take place over a 10-month period beginning in March 2015.
This training and the subsequent advocacy activities are part of a larger effort to increase HIV treatment access supported by the Robert Carr civil society Networks Fund.
ITPC and ARASA look forward to sharing further updates in the new year.
For more information on the ACT Toolkit, click here. -
ITPC and KeNPUD: Working together to protect the health and rights of PUDs in Kenya
In 2013, the International Treatment Preparedness Coalition (ITPC), through Bridging the Gaps, supported KeNPUD with a small grant to grow their organization. Mid-way through their ITPC grant, KeNPUD has conducted 15 advocacy actions, conseled 85 people, and held HIV education workshops for over 200 people. They continue to do health outreach to mobilize people to know their rights.
[youtube link=”https://www.youtube.com/watch?v=5S7P5a_82mI” width=”590″ height=”315″] -
New report: Global Action with Local Impact: Why Advocacy Matters
News summary
The report, “ Global Action with Local Impact: Why Advocacy Matters ,” details strategies used and outcomes achieved by ITPC and our other global network partners focused on key populations under the Bridging the Gaps programme.
The report examines the role of international advocacy in addressing HIV among key populations, including people living with HIV (PLHIV), people who inject drugs, sex workers, and lesbian, gay, bisexual, and transgender (LGBT) people. All work featured in the report was conducted by Bridging the Gaps global partners: the Global Network of People Living with HIV (GNP+), the International Network of People Who Use Drugs (INPUD), the Global Network of Sex Work Projects (NSWP), the MSMGF , and the International Treatment Preparedness Coalitio n (ITPC). -
Call to Action from HIV community
In July 2014, 23 community leaders came together at the Bellagio Centre, Italy for a three day meeting to assess the state of the HIV/AIDS movement. The meeting resulted in this Call to Action.
The Bellagio meeting brought together a diverse group of academics, health practitioners, activists and policy makers, including HIV and human rights activists; government sector representatives; people who work on health systems strengthening and primary healthcare; experts in Tuberculosis (TB) and Hepatitis C; and people with experience working on access to medicines and intellectual property rights.
ITPC wanted to examine how the many successes and achievements of the HIV movement could be applied to health system debates. The objectives were to examine the value and challenges of integrating with other social justice movements; strategize about how to capitalize on the expertise of the HIV advocacy movement; learn from how community based HIV service delivery approaches can improve broader health systems; and identify how to continue to strengthen community responses.
The resulting Call to Action is a result of that meeting. The meeting was convened the meeting with support from the Rockefeller Foundation and Pangaea Global AIDS. Read the full report here.
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Why I’ll keep showing up to protest Gilead’s pricing on Hepatitis C drugs
We knew it wasn’t going to be easy to protest at the recent Gilead Press Conference in New Delhi, held on 15th September 2014. The press conference was in a posh, five-star hotel. So we thought we’d do a silent protest, to get our message across to Gilead, Indian pharmaceutical companies and the local press that Gilead’s refusal to allow generic versions of the drug Solvadi (which can cure Hepatitis C) in some countries is unacceptable.
We were a group of local activists, from across organizations in India, numbering about 10 people. When we arrived at the hotel, we found the press conference room and set-up the protest at the entrance. We pulled out a large banner, and sat down at the main entrance gate. We did not shout or make noise – we just stood there in our HIV Positive t-shirts with our posters. After about 30 minutes, the security men said, ‘that’s enough’ and told us to take down our banner and leave. We politely refused. Suddenly, I saw two of my colleagues from the Delhi Network of Positive People (DNP+) being manhandled by security as they attempted to drag them out of the room.
I didn’t think this was right, so I ran towards them and wrapped my body around them, locking our hands and feet together and forming a kind of human chain. Now the security men tried to pull us out of the room one by one, but we were too strong to break apart. They called for more men, and gradually because they greatly outnumbered us started lifting us off the floor. I had been silent, but now I began to yell, ‘Why are you doing this? We are here fighting for our lives.’
As I was yelling, about five men descended upon me and yanked me out of the room by my hair. They threw me on the ground outside of the exit gate. I was stunned, and angry. I found out later that someone from the press conference barred journalists from taking photographs or shooting videos of the protestors outside the venue.
Looking back, despite the physical harm, I’m still proud that we pulled off the protest. At the Delhi Network of Positive People (DNP+) and ITPC South Asia, we don’t use protests as the first option for conveying our message. But if repeated letters and meetings have no effect – as is the result with Gilead, who refuses to engage with us – then we have to take our campaign public. We show up for a protest because we have no other options.
But despite Gilead’s attempts to cover up our protests, we are not going anywhere. The HIV treatment movement cannot ignore Hepatitis C; we have seen more and more people diagnosed with the disease among our friends. We have watched them suffer or die because they cannot afford the cost of treatment. Now that there is a cure for Hepatitis C on the market, we have even more incentive to fight to access it – otherwise all of our hard work and investment in HIV treatment will be in vain. -
Activists gather to discuss increasing global access to Hepatitis C treatment
Forty activists and treatment advocates from around the world are in Bangkok from 22 to 25 February 2014 to attend the first World Community Advisory Board (CAB) meeting on Hepatitis C Virus (HCV) treatment. The participants will also meet with key pharmaceutical companies producing medicines to treat HCV. Members of ITPC’s Middle East & North Africa and Russia networks are participating in the meeting.
According to recent estimates, over 185 million people worldwide are infected with Hepatitis HCV, with up to 500,000 HCV-related deaths per year.
While there is treatment for Hepatitis C – including a new drug released in December 2013 that cures HCV – the vast majority of people with HCV remain untreated. Treatment rates range from 3.5% in Europe to 21% in the US. In low and middle-income countries, access to HCV treatment is extremely limited, mainly because the medicines are too expensive. For example, the cost of treatment with the most recently released medicine, Gilead’s sofosbuvir, is US $84,000 per patient for a regular 12-week course. Patients that have a hard-to-treat strain of the virus would need a 24-week course, bringing the price to $168,000.
At the World Cab, activists working to increase access to HCV medicine will share information and strategize together on how to address challenges preventing HCV treatment access including: intellectual property rights, HCV Direct Acting Agents (DAA), patent updates and regional experiences with pharmaceutical negotiations. They will also discuss specific challenges affecting people who inject drugs (PWID) and men who have sex with men (MSM).
From 24 – 25 February, the activists will meet with pharmaceutical representatives to share their concerns around treatment patents and pricing. Companies attending the meetings include: BMS, Abbvie, Jansen Merck, Roche, Gilead and Indian generic company Cadilla.
The meeting is organized by Treatment Action Group (TAG) with support from Asia Pacific Network of People Living with HIV/AIDS (APN+) and funded by TAG, the Open Society Foundation, the World Health Organization, Médecins du Monde, the Global Network of People living with HIV (GNP+) and AIDS Fonds. -
Activists gather to discuss issues faced by women living with HIV and AIDS in Eastern Europe and Central Asia
On 6 and 7 June in Minsk, Belarus, the Public Health and Social Development Foundation, FOCUS-MEDIA, with organizational and logistical support from ITPCru, held an international conference for women affected by HIV across the Eastern Europe and Central Asia region.
Participants included activists from the EVA Women’s Network, the Candle Foundation (Russia), the Community of People Living with HIV in Belarus, the Positive Movement (Belarus), the Ukrainian Network of PLWH, and the Positive Women Organization of Ukraine.
In addition to HIV-positive women and activists from these organizations, representatives of public institutions, such as the Ministry of Health of the Republic of Belarus and the Repulic of Tatarstan’s National Center for the Prevention and Control of AID, were also present.
The focus of the conference was on issues surrounding the quality of life of women with HIV. Specific issues were discussed as related to health and ‘beauty’ while taking ARVs, self-acceptance with HIV, and self-stigma.
Presentations were conducted covered a wide-range of topics, including access to breast milk substitutes, international advocacy by women, working with the media, engagement of HIV-positive teenagers, successful practices in working with women affected by HIV from vulnerable groups, and violence and codependency as a factor in the spread of HIV.
In addition to the scheduled presentations, the conference provided the forum and opportunity for women affected by HIV across this region to share and exchange their experiences.
The conference was the final event of a two-year project by the United Nations Democracy Fund (UNDEF) that was conducted in Russia, Ukraine and Belarus by FOCUS-MEDIA, with the support of ITPCru. -
HIV treatment advocates from MENA region demand lower prices for key drugs
Today, the Middle East North Africa (MENA) region is considered to have one of fastest growing HIV epidemics in the world and the lowest rate of treatment coverage – with only 14% of people in need receiving antiretroviral therapy.
ITPC MENA and ALCS-Maroc recently organized a World Community Advisory Board meeting, bringing together 17 activists from nine countries in the region, to engage in dialogue with the Medicines Patent Pool and the pharmaceutical company ViiV Healthcare. The discussions revolved around how to improve access to HIV treatment in the region.
According to Othoman Mellouk, Regional Advocacy Coordinator of ITPC-MENA: “This is the first time in the MENA region that representatives of people living with HIV and civil society advocates gather together in a Community Advisory Board to meet officially with pharmaceutical companies and public health institutions to negotiate and question them about accountability and responsibility to ensure all people in need access lifesaving treatment.”
During the meeting with the Medicines Patent Pool (MPP), treatment activists raised concerns about the exclusion of several MENA countries in licenses negotiated by the MPP with pharmaceutical companies.
Activists also denounced the exclusion of children from Jordan and Libya from accessing two key medicines under an MPP license. They called on the MPP to urgently re-open discussions with companies to amend these licenses to ensure these children have access to lifesaving treatment.
During the meeting with ViiV Healthcare, advocates raised issues around: information about ViiV’s antiretrovirals, pricing and registration policies, intellectual property rights, drug quality control and results of clinical trials conducted on new drugs in development.
They also urged ViiV to review the geographic limits of its Access Initiative – as the current Initiative excludes children in Jordan and Libya. Regarding ViiV’s recently launched drug dolutegravir, activists requested fast access and lower prices in all low and middle-income countries in MENA. Dolutegravir is a new integrase inhibitor, which can be used in combination with other anti-retroviral medicinal products for the treatment of HIV infected adults and adolescents above 12 years of age.
“It was very pleasant to note that as a result of our capacity building efforts during the last three years, the level of knowledge of the patient community has grown. Community advocates are taking now a different approach to drug provision. People living with HIV understand that nothing is given for granted, and if they do not start to fight for their rights, everything will go for the commercial interests of the companies” , added Othoman Mellouk.
The meeting minutes as well as positions of MENA-CAB regarding the policies of specific companies, will soon be available at our website ( www.itpcmena.org ). -
Grassroot activists work for treatment access across Russia
Between June and August 2014, the Patients in Control initiative, a grassroots movement centered on treatment advocacy in Russia, received nearly 25 private appeals from patients regarding the unexpected replacement of their treatment regimens.
These appeals came from ten regions across the nation, including Ivanovo, Tatarstan, Kaliningrad, Krasnoyarsk, Murmansk, Moscow, Nizhny Novgorod, Perm, Rostov-on-Don and Leningrad. Based on these patient appeals, more than 30 official complaints for violation of Russian Federal law №38 were submitted to the regional state health agencies and to the prosecuting authorities of subjects of the Russian Federation. Complaints were also sent to the Ministry of Health, the Federal Service on Surveillance in Health Care and the Federal Service for Supervision of Consumer Rights Protection and Human Welfare of the Russian Federation for each region.
In Murmansk, activists of the movement initiated the prosecutor’s inspection, which revealed violations in the provision of treatment for HIV-infected patients. Additional activities helped establish open communication with the chief of the local AIDS center.
In Nizhny Novgorod, activists of the movement initiated a roundtable discussion on the issues of access to ARVs and HIV prevention in the region. Regional government officials and activists of patient organizations participated in the discussion. The outcome of the meeting was the decision to study the mechanism for eliminating these problems at different levels. Additional advocacy activities resulted in the early delivery of ARVs in the region following the prosecutor’s inspection.
In the Tatarstan region, requests to the Ministry of Health of the Republic of Tatarstan and the President of Tatarstan were submitted. According to the monitoring of procurement of ARVs, auctions in the region were announced nearly two months later than in 2013, which is likely the cause of ARV availability issues in the region. In response to this issue, activists, with technical support from ITPCru, organized a meeting with patients. The resulting advocacy activities helped ensure early delivery of ARVs in the region. A videos of these efforts can be viewed here .
In the Perm region, one activist conducted a protest at the regional Ministry of Health to bring attention to the availability of essential drugs in the region that has arisen due to the late announcement of electronic auctions. The protest resulted in a meeting of the Public Council, where solutions to the ARV stockouts were identified. It was decided that in October 2014, the AIDS Center will start to form the ARV drug request for 2015 and align it with the local Ministry of Health. Accordingly, in January 2015, the Center will prepare auction documentation for the timely announcement of trades. Furthermore, a total of 10 million rubles from the 2014 regional budget will be allocated for the purchase of ARV drugs.
As a result of the advocacy work conducted by activists of the Patients in Control initiative, with technical support from ITPCru, an extensive investigation was conducted on the availability of ARVs, delays in electronic auctions and patient complaints. These investigations were initiated at the request of the Ministry of Health and the Federal Service on Surveillance in Health Care in all regions of Russia.
While these achievements have already improved the state of treatment access in many regions, work in this area of treatment advocacy remains critical, as the Patients in Control initiative continues to receive new appeals.
Stay tuned for an update from this initiative in the coming months! -
ITPC China works to eliminate d4T
The International Treatment Preparedness Coalition (ITPC) – China is working to support the immediate phase out of d4T, an anti-retroviral drug that has serious side effects. For several years, the World Health Organization (WHO) has raised concerns over d4T’s high levels of toxicity, and no longer recommends it as an optimal first line ARV.
Although China’s government has vowed to phase-out the drug, it remains common in many rural areas, due to the drug’s relatively inexpensive cost. In 2012, it was estimated that 26 per cent of the 140,000 people living with HIV (PLHIV) in China were still taking d4T.
According to ITPC-China Regional Coordinator Hongwei Lu, phasing out d4T will require a significant investment on behalf of the government into procurement of TDF, a suggested first-line alternative. It also requires improved treatment literacy among PLHIV. “Some patients who experience side effects on other ARVs switch back to d4T not realizing the long-term side effects may be more severe,” said Lu.
Some of the common side effects of d4T include lipodystrophy (when fat is re-distributed on a person’s body), peripheral neuropathy, and lactic acidosis, as well as damage to the liver and pancreas.
Since the beginning of 2013, ITPC-China has sent out leaflets and T-shirts among community-based organizations to raise awareness around d4T and advocate access to comprehensive and safe treatments, especially among the poor. ITPC-China has also tapped into Weibo, a social networking space, and other platforms to spread information about the negative consequences of d4T use and promote an alternative.
ITPC-China is also supporting a lawsuit in Shangdong Province, where a female patient was put on d4t despite the existence of guidelines that the ARV should no longer be used. As a result, the woman is suffering from d4t’s side effects. ITPC-China helped the woman identify a lawyer and provided funding for the lawsuit.
In the long-term, ITPC-China will advocate for more ARVs to become readily available in China, as having several, inexpensive options will be the only way to ensure more PLHIV have optimal treatment regimens.
For more information about ITPC-China’s campaign for the phase out of d4T, please email: luhonwi@gmail.com
This blog post originally appeared on the HIV Advocates website.
