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Lost in translation: reflections from the 20th International AIDS Conference (July 2014) By Gracia Violeta Ross: UNITAID Board Member for Communities Living and Affected by HIV/AIDS, TB and Malaria

With great enthusiasm I started my 33 hours flight from Bolivia to the big country-continent: Australia. But my first night in Melbourne was filled with tears as I turned on the television and heard of the attack to the Malaysian flight MH17.

The opening ceremony of the 20th International AIDS Conference paid respect to the scientists and advocates who died in this tragedy. Throughout the conference, almost all plenary speakers spoke about the “now more than ever” feeling and the importance of Stepping Up the Pace of the AIDS response. In this blog I share some of my reflections from my week in Melbourne.

The highlights

• I was reinvigorated by the effective activism on Hepatitis and HIV as activists protested against the hypocrisy of the big pharmaceutical industry pricing life-saving medicine beyond the means of people and governments

• It was interesting to learn about the issue of “Grey HIV” as we are seeing people living with HIV getting older in developing countries. Getting old with medications and with HIV looks scary for me because I am also living with HIV and I am already 37!

• It was inspiring to hear daring talks about sexuality in conservative contexts such as those in some Muslims countries and Christian conservative settings. I was pleased to hear that faith leaders are increasingly tackling this issue and talking to their peers

• Although the theme of the conference was “No one left behind”, I heard a lot of the discourse of “shared responsibility” in the AIDS response. Ultimately, this is the idea that countries will have to “find your own funding”. For Middle Income Countries (MICs), the pressure is already mounting and there is a real risk that these countries will be left behind

• I did not hear a lot about women and girls as a key population and the links to gender based violence and HIV. Moreover the debate on vulnerability to HIV infection and impact must recognize that each community and country has its own vulnerabilities that need to be considered in AIDS response

• Children living and affected by HIV were notably absent and this is a fundamental mistake, given the fact that this group is really voiceless and vulnerable. There are huge gaps in the coverage of treatment for HIV and TB for children. I am really enthusiastic about UNITAID because it invests in shaping the market for diagnosis and treatment of children

• As someone coming from Latin America, I felt the strong absence of my region, not only in that very few delegates from Latin American and the Caribbean were present, but also in the fact that the UNAIDS’ “global analysis” included incomplete data from these two regions. At the conference, I realized that there is much misunderstanding about Latin America and the Caribbean. Some donor countries seem to believe these two regions have universal coverage of treatment and prevention services. The reality is that Latin American countries vary a lot and there is huge inequality and disparity.

At the end, I left Melbourne without seeing the sun nor one Kangaroo!

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Reflections on AIDS 2014 – Stepping up the Pace and Leaving No one Behind By Georgia Burford (CAFOD)

Reflections on AIDS 2014 – Stepping up the Pace and Leaving No one Behind By Georgia Burford (CAFOD) The International AIDS Conference in Melbourne 20-25 July 2014 is the 20th gathering of the largest regular conference of any health or development issue, bringing together politicians, scientists, epidemiologists, practitioners, policy makers, the private sector and communities of people living with and affected by HIV. There is uniqueness in this fight against HIV in that it is a social movement, pulling people together and putting people at the forefront of the response to sustain our efforts on addressing HIV. It’s a powerful reminder that HIV has not gone away and is still affecting the lives of many today. The theme of this year’s conference was ‘Stepping up the Pace,’ summarised by Bill Clinton when he said ’It says much good work has been done, but it’s not an excuse to slow down. Right now we must redouble our efforts on areas like stigma and discrimination, which after 30 years is still increasing in some regions. We have the tools; we need to step up the pace.’ There has been remarkable progress since the 1980s, when HIV was a condition that had no name, no tools to diagnose, prevent or treat it. Today, there are 15 million people on treatment, yet there are still alarming challenges that must be tackled in order to even contemplate an AIDS free generation. Statistics from 2013 show there were 1.5 million HIV deaths, 2.1 million new infections and 35 million people living with HIV. Of the 35 million people living with HIV, 55% (19 million) don’t know they have the virus. They haven’t been tested and if they don’t find this out, they will die. The conference highlighted many reasons as to why people do not access or drop out of treatment. Reasons can be due to lack of services; however, a large part is due to stigma. Studies and personal testimonies have shown that:

  • Men are less likely to come forward for testing [1] when their wives are being tested during pregnancy because:” pregnancy is about women not men”. Men may be testing but not telling their partners, claiming that “they’re too busy”
  • Women, who may often discover a positive test whilst pregnant, will opt out of treatment and out of disclosing to their partners for fear of loss of trust, abandonment and violence from their partner for bringing HIV into the home[2],[3].
  • For youth, where 2 out of 3 new infections is amongst girls aged 15-19 years old, HIV remains the biggest killer of adolescent girls. This can be attributed to the lack of education around sex and HIV[4],[5], the stigma and barriers to youth friendly sexual health and HIV services[6] and links between poverty and transactional sex[7].
  • For Key populations, including sex workers, men who have sex with men and injecting drug users, many are inhibited from seeking testing and treatment because of legislative, structural and societal barriers – fear of judgement or reprimand[8],[9].

In many cases it may be easier to ignore the positive status than deal with the consequences of seeking support. The need for this is highlighted in a recent report produced by STOPAIDS Entitled “Increasing DFID’s contribution to Addressing HIV among key populations which makes a series of recommendations about ways to advance the rights of communities who are disproportionately affected by AIDS. The report was launched at the conference alongside a recent film focusing on people who use drugs in Moldova. We must tackle stigma and discrimination at every level including state policies. The AIDS 2014 conference organisers released the AIDS 2014 Melbourne Declaration, calling for an end to discrimination against people with HIV and the eradication of criminalising laws and practices. [10] Another key issue highlighted at the conference is the importance of monitoring viral load to ensure PLHIV are able to access necessary medication in order for treatment to be optimally effective. However, currently very few high-burden countries routinely offer viral load testing to people receiving HIV treatment. Since 2012, UNITAID has supported projects working to make viral load testing technologies available in resource-limited settings in Sub-Saharan Africa, but these do not yet address viral load monitoring needs on the large scale required. More efforts are needed to make new viral load testing technologies must be affordable and appropriate for poor resource settings in order to be used effectively. In Melbourne, UNAIDS launched the Diagnostics Access Initiative which calls for improving laboratory capacity to ensure that all people living with HIV can be linked to effective, high-quality HIV treatment services. Lack of access to Treatment is still a huge concern especially that there is a 10 fold price increase from 1st line to 2nd line treatment. In reality, the international community is facing huge challenges to control HIV. Therefore, governments, policy makers, funders, and civil society need to:

  • Have a renewed focus to work on the Key Populations and those most at risk and focus on stigma, discrimination and the legislative barriers
  • Address the dysfunctional health systems that hinder treatment
  • Continue campaigning for effective, affordable and appropriate new medicines and medical technologies (e.g. viral load equipment)
  • Challenge the notion that HIV is over and ensure that decision makers realise that  we are at a critical tipping point, where if we don’t step up the pace now we will miss the opportunity to contain the epidemic
  • Ensure the unfinished business of MDG 6 is taken forward post 2015 into the health goal

In the expressive words from Sir Bob Geldof, ‘We have come so far but there is a preposterous reluctance to fund the last mile. The advocates get tired, the same message goes out to the same people and it becomes less effective.’ I can’t help but think that many of the UK based members of the STOPAIDS network feel the same. It’s not only a challenge on the global stage, but often within many of the organisations we work in. We must not become those tired advocates beating the same drum, but come back from the conference championing the successes of our work over the last 30 years and enter a phase of renewed energy to ensure we step up the pace and most importantly leave no one behind.


 

References

[1] Intrahealth International at AIDS 2014 Conference

[2] Rev Phumzile Mabizela, INERELA+, Pre Interfaith Conference
[3] Jennifer Gatsi Mallet, Namibia women’s health network, ICW, Plenary Session AIDS 2014 Conference
[5] UNESCO poster at AIDS 2014 Conference
[6] YWCA, PNG, Pre Interfaith Conference
[7] Cluver, L, Boyes, M, Orkin, M, Pantelic, M, Molwena, T, Sherr, L. Child-focused state cash transfers & adolescent HIV infection risks: A prospective multi-site study in South Africa. The Lancet Global Health
[8] Rev Phumzile Mabizela, INERELA+, Pre Interfaith Conference
[9] Khuat T. Oanh, MD, Vietnam, Diane Havlir, MD, United States, Daisy Nakato Namakula, Uganda, James Ward, BA, Australia, Wednesday Plenary Session AIDS 2014 Conference
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Medicine, monopoly and malice: critically-acclaimed documentary on access to medicines ‘Fire in the Blood’ opens in UK and Irish cinemas

Fire in the BloodA new documentary film opening in UK and Irish cinemas this week tells the story of what its makers call “the Crime of the Century” – how available low-cost antiretroviral medicine was blocked from reaching Africa and other parts of the global south in the years after 1996. The film signals the dangers of the increasingly-perilous outlook for access to essential medicine in developing countries.

Fresh from its much-talked-about premiere at the Sundance Film Festival in Park City, Utah, last month, Fire in the Blood opens at the Irish Film Institute (IFI) in Dublin and the Prince Charles Cinema in London later this week. The film will be released in cinemas  across the UK on Monday 25th February.  The film tells a harrowing story of inhumanity and heroism, with a highly compelling cast of characters.  It details how it could come to pass that millions upon millions of people, primarily in Africa, were left to die horrible, painful deaths, while the drugs which could have saved them were being safely and cheaply produced and distributed just a short airplane ride away.

“I was curious to see what the reaction in the US would be”, says writer-director Dylan Mohan Gray.  “So much indoctrination about the necessity of high drug prices has gone on there that the Big Pharma Research & Development (R&D) defence is very much a sacred cow… even those with profound reservations about how the industry behaves tend to grudgingly accept its validity.  This is very easy for me to understand, since I was more or less that way myself when I began digging into all this.”  Gray was, however, gratified to discover that the American audiences who waited in line to attend six sold-out screenings at Sundance had much the same reaction after seeing the film that he had had when he began to work on the story.  “There is a very strong sense of betrayal when people find out what their governments have done in their name… and a very powerful conviction that the prevailing system of developing and commercialising medicine has to change”.

As the film points out, drug companies actually do very little basic research for drug discovery.  “84% of drug discovery research is funded by government and public sources”, says Gray, citing the landmark work of Professor Donald Light, “Pharmaceutical companies fund just 12% of such research, while the lion’s share of their spending goes into marketing and administration.”  These facts will come as little surprise to those familiar with the industry, but many have never really contemplated the repercussions of pricing essential medicines at levels only a tiny sliver of the world’s population can afford. 

While the film tells the story of how multinational drug companies and the Western governments collaborated to keep low-cost generic AIDS drugs out of the hardest-hit countries at the height of the HIV/AIDS pandemic – at a cost of ten million or more lives – it also tells the fascinating story of the unlikely group of people which came together in order to try and break this blockade.  Among this number were front-line doctors, HIV-positive activists, generic drugmakers, intellectual property specialists and individuals of global stature such as Desmond Tutu and Bill Clinton (both interviewed in the film).  “That’s what really set this story apart for me”, says Gray.  “It was a real-life David versus Goliath tale, full of incredibly interesting, daring, courageous mavericks who took on the world’s most powerful companies and governments to do what virtually everyone else at the time said was impossible (i.e. mass treatment of HIV/AIDS in Africa), and against all odds they won…” 

While the inspirational story of how low-cost generic AIDS drugs, first and foremost from India, came to save millions upon millions of lives in Africa (and beyond) is at the heart of FIRE IN THE BLOOD, the film concludes on a distinctly alarming note.  “The story this film tells was on the verge of being forgotten, something we can’t afford to let happen”, says Gray. The film details the tireless efforts of Western governments, working on behalf of industry, to impede and cut off supplies of affordable generic medicine from countries like India and Thailand to other parts of the global south, primarily by means of bi- and multilateral trade agreements which low- and middle-income countries are placed under enormous pressure to sign.

“The drug industry is stagnant, its pipeline is anemic and it has pinned all its future hopes on China and India”, notes Gray.  “Almost all these companies are publicly-traded, which means their bosses have to keep turning profits quarter-by-quarter if they want to try and keep their jobs… as they see it, they simply can’t afford to take a humanitarian view on issues of access.”  With the World Health Organisation having estimated that one-third of all deaths worldwide are attributable to treatable and preventable diseases, largely due to lack of access to medicine, the stakes could not be higher. 

Meanwhile, for all its insistence that high prices are the only practical trade-off for an industry that spends so much money on R&D to find new and innovative medicines, Gray noted with a wry smile that the who’s who of senior pharma executives will be gathering in London for the industry’s can’t-miss event, the Pharma Summit, just a few days after FIRE IN THE BLOOD opens theatrically in the UK.  “I was amused, but not surprised, to read that the theme of this year’s summit is Should pharma cut its losses and get out of R&D?”.

Araddhya Mehtta is a global heath campaigner for Oxfam GB.

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An AIDS-free generation is in sight but action is needed now

Protesters campaigning against Novartis in India.In 2001, I stood in front of a huge picture in the UN building in New York. It showed an African woman on her death bed with another woman hold her hand. It said: “You must not die alone”. I screamed: “You must not die full stop! There is treatment!”

My friends in the UK were living and working thanks to treatment provided free through the public health system, so why not this lady?

Today, interviewers ask me: “What are the major challenges for HIV in country X?” My response is that there are four challenges facing all countries dealing with HIV: funding, health systems, medicines and prejudice.

AIDS has uncovered many ills in the world: donors’ lack of long term commitment, weak health systems and flawed drug research and pricing. Not to mention deep-rooted stigma, prejudice and discrimination against marginalised including women, men who have sex with men, drug users, and sex workers.

Achieving the goal of an AIDS-free generation and the control of HIV is in sight but action is needed now.

1. Donors dragging their feet

Firstly, donors are dragging their feet from supporting the Global Fund which provides grants to countries to finance effective prevention, treatment and care programmes. Clearly donors need to re-think their reluctance. The more people we treat now and the more infections we prevent, the less costly the AIDS response will be in the near future and the more lives will be saved. The opposite is also true: ignore scaling up of prevention and treatment now and pay later not only in terms of lives lost but also in terms of money needed to contain an escalating epidemic.

2. Drug companies – part of the problem as well as the solution

Second, drug companies! They are a big part of both the problem and the solution. Thanks to Indian generic companies’ competition, the price of first line antiretrovirals dropped from £10,000 per patient per year to under $100. But now patients need more effective medicines and some need new ones which are still under patent. To avoid the patent block, civil society organisations and others supported UNITAID, the international drug purchasing facility, to establish the Medicine Patent Pool (MPP).  MPP acts as a one stop shop where the big international pharmaceutical companies license their medicines to the pool and then generic medicine manufacturers can make the needed combinations – paying royalties on sales in countries that have patent on those drugs.

Yet so far, the big companies are dragging their feet or refusing to join. Only Gilead issued a license, which represents a good start but still needs to be improved. ViiV Healthcare (created by GSK and Pfizer), Boehringer Ingelheim, Bristol-Myers Squibb, Roche and Bristol Myers Squib are taking a long, long time to negotiate with MPP. I am not sure when they will conclude these negotiations with decent licenses. We cannot wait forever!

Other companies – notably Johnson & Johnson, Merck and Abbott – refused to join. Instead, they are trying hard to polish their public image by cutting separate deals with generic medicine manufacturers but the terms of the licenses are not transparent  and they exclude patients in many countries. For example, the latest J&J deal on the drug “darunavir” excludes the West Bank and Gaza where the drug is sold at USD 5900 per patient per year!

When will drug companies put patients’ lives before making huge profits?

3. A critical need to invest in public health systems

The need for treatment programmes highlights once again the fact that investing in public health systems must be a priority for all governments and donors. Without qualified health workers (including managers, planners, pharmacists, etc) infrastructure, health information systems, and medical supplies, we will not be able to scale up treatment to reach all who need it. Yet some government donors still see investing in public health system as a remote goal to dream about rather than an urgent action to be performed now. A decade of increased funding for HIV response and most countries still face bottle necks in the drug supply chain – because of a lack of investment.

4. Addressing discrimination

Last but not least, all governments, community and societal leaders must address the deep-rooted discrimination in their societies. Countries cannot continue to ignore the rights of women, girls and marginalised groups under the cover of culture, religion or any other banner. In this age where young people across the world are communicating and sharing views and ideas about rights, it is not possible to continue with discriminatory laws and rules.

For a start, access to prevention, treatment and care is a right for all.

Mohga Kamal-Yanni is a Senior Health and HIV Policy Adviser at Oxfam GB.

This blog was originally posted on  Oxfam Policy and Practice website on the 1st December 2012.

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Reflections on the AIDS Conference 2012: reasons for hope but the battle continues

An HIV/AIDS activist in a ‘Keep the promise’ march at the XIX International AIDS Conference (AIDS 2012) Washington D.C. As the 19th AIDS conference drew to a close last week, I left Washington DC with mixed feelings of hope and despair. Advances in science gave me hope for the day we can cure HIV, yet pharmaceutical companies’ fierce fight for control over existing and emerging technologies remind me of the battles ahead. I was optimistic about the commitments made by Jim Kim, the new president of the World Bank, to invest in health systems that work for the poor, but worried that declines in donor funding will slow down progress. Above all, I was energised by the activists in the North and South who have for decades demanded action. Yet I felt frustrated at the lack of high-level commitment to address prejudice, stigma and discrimination. Here I reflect on my three greatest hopes and the three battles in the struggle to end AIDS.

REASONS FOR HOPE

1.   THE SCIENCE IS MOVING TOWARDS ENDING AIDS
Great strides have been made by the scientific community and the goalposts have clearly shifted – instead of “fighting AIDS” we now talk about “ending AIDS”. Scientific advances in prevention and treatment have saved lives and turned the deadly disease into a chronic condition. Medicines for those who develop resistance or side effects are more effective than ever before and scientists are on track to find a cure. There are new lab techniques to test and closely monitor people living with HIV in order to improve treatment. The evidence is clear that treatment is an effective method of prevention and new studies show that early treatment results in far better health outcomes. Therefore, there is a strong recommendation to start treatment as soon as a person is diagnosed.

2.   BOLD COMMITMENT FROM THE WORLD BANK
In his opening remarks, the new World Bank President Jim Yong Kim stated that the World Bank would play a pivotal role in ending AIDS by focusing on what it does best: building health systems. I strongly believe that investing in health systems (including infrastructure, health workers, drug supply chains, and health information systems) is a critical prerequisite to ending AIDS.  To achieve Jim Kim’s vision I hope that the World Bank will increase its support to developing countries (with help from other donors) to invest in free public health care and support community-based care. Access to free treatment has been critical in the struggle against HIV and we must learn from this lesson.

3.    THE POWER OF ADVOCATES
In his speech Jim Kim reminded delegates that at every point in the history of the epidemic, it was the HIV activists who have led the way – putting pressure on politicians and drug companies to act. The 2012 conference brought together the veteran fighters who broke the silence on HIV decades ago and the young activists who are driving the movement today, demanding their rights and creating new societal norms in difficult contexts, such as the Middle East.

THE THREE BATTLES

1.   PHARMA: THE DE JA VU PHENOMENON
As new medicines come on stream, there are signs that pharmaceutical companies are taking the same path they took decades ago when the first ARVs became available and advocates fought tirelessly to demand access to new treatment. Now as then, the pharmaceutical companies want to control of the Intellectual Property for these medicines in order to maintain absolute control of the market.  For example, companies such as Johnson & Johnson and Merck are refusing to license their medicines to mechanisms like the Medicine Patent Pool (MPP), an initiative which would enable widespread generic competition and hence expand access to medicines. Some companies have cynically claimed that they are refusing to work with the MPP because they want to ensure patient adherence – as if a patent monopoly would allow them to monitor every patient! Others claim that the market for their products is so small that it cannot bear more than 2 to 3 producers: the company itself and those it decides to provide voluntary licenses.  Such licenses tend to have very limited geographical coverage and their standards are not open for public scrutiny (unlike the MPP license which has transparent policy and is mandated to negotiate wide geographical coverage).  Besides, generics companies, which understand the dynamics of the generics market, are best placed to determine whether it is worth producing a generic version after the entry of 2 or 3 generics producers.

2. DECREASED FUNDING
There is no doubt that donor funding for HIV and health is decreasing. The global financial crisis has been blamed for this decrease. Yet it is not possible to end AIDS without investment in massive scale-up of prevention and treatment efforts, especially via the Global Fund. Last year, the Global Fund cancelled Round 11 causing difficulties in programmes in a number of countries such as Malawi and the Democratic Republic of Congo.

This year the Global Fund is discussing a new funding model to replace the Round system.  We activists are concerned that the “financial crisis” will dictate a model that dampens country demand.  Allocating budgets to countries, as has been proposed at the Global Fund, will induce “self-censorship” whereby countries go for what they can buy with their allocated funds rather than what they actually need. I hope that the Global Fund board rejects such top-down approaches and maintains the principle that it prides itself on: country ownership. To enable the serious work to end AIDS to continue donors will also need to fulfil their funding commitments.

3.   WOMEN AND VULNERABLE GROUPS
The initiative to have a HIV free generation via stopping mother-to-child transmission is to be applauded. Yet the lack of commitment of donors and governments to treating women before and after birth is appalling. Also, the lack of high-level political commitment from country leaders to tackle prejudice, stigma and discrimination threatens to undermine the goal of ending AIDS.

FINALLY..
In a nutshell, the science, the advocates, and the new World Bank give me reason for hope. It’s now time for pharma, donors, and governments to play their part. Activists will not wait for long to act!

Mohga M Kamal-Yanni works for Oxfam as a Senior Health & HIV Policy Advisor

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Global Health Check is edited by Anna Marriott, Health Policy Advisor for Oxfam GB, and welcomes contributions from different authors. If you would like to write an article for this site or if you have any queries please contact: amarriott@oxfam.org.uk.