After eighteen months of non-stop work to forge some new tools and organising a dozen initiatives to engage them, the IMAXI Cooperative is taking a needed break. Unplugged and disconnected. As we are driven only by patients who volunteer, and without any funding or resources other than whats in our own pockets, the Cooperative is now having a well deserved 'retreat' for the next few weeks to recharge our energies and plan the coming year. During this time, it will not be possible to sign-up new accounts on our website, www.imaxi.org as our moderators are all off-line. Our twitter platforms and facebook will also be on 'hold'. We'll be back in the new year, recharged and wired up to move forward in 2012. We wish all our members, friends and supporters a warm, healthy and happy holiday season.

Update: "#GlobalFund: No Future! What's the #AIDS 'Community' doing about it?" Join #MeetUpMondays Host @AIDSindia Mon.11h30 IST/ 6hGMT at #HIV_chat
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- Sarah Boseley writes: "In what must be seen as a serious setback in the progress made against the major infectious diseases in poor countries, a Board meeting of the Global Fund to fight Aids, tuberculosis and malaria in Accra, Ghana, has effectively cancelled its next round of grant-making.

The Fund has been staring at a financial black hole ever since its big replenishment meeting in New York a year ago failed to deliver the sums it hoped for. It wanted $20 billion. It got $11.7 billion. That was in spite of exhortations to donors to pledge money from UN secretary general Ban Ki-moon, who warned that the stakes were high and that lives would be lost if pressure on the big killer diseases was not maintained. If we lose the ground we have gained, we will be back to square one ? all that effort and investment, lost. The decisions you make here today will determine the outcome. It once seemed unthinkable that the money would not continue to stream into programmes to treat people with Aids, TB and malaria and to prevent others becoming infected. But that is what is happening. There is no doubt that people who could have been spared will instead fall ill and die as a result of the drying up of funds. There is also a Damoclean sword hanging over the heads of people who are alive and well thanks to drug treatment for their HIV infection. The Global Fund - together with Pepfar (the President's emergency plan for Aids relief) has been the main source of money to pay for drugs. Those who start the combination treatments to prevent HIV causing Aids must stay on the drugs for life. If they stop, there is a danger the virus will become resistant to the drugs they are on.

During the last few weeks we've been watching two lines of march coming together. With one arriving from the top and the other from the bottom, a unique opportunity to advance the rights of people to decent health care has developed.

In Rio de Janeiro, the WHO brought together a few hundred Ministers, UN agencies and health experts to discuss the Social Determinants of Health (SDOH). They spent Oct.19-21, speaking about the great inequities in health around the world. Two finely worded Declarations came out of this World Conference - one from the Ministers / WHO and another 'alternative' from the Peoples Health Movement. Unfortunately, neither have many connections with the communities most affected by health inequities and neither bothered to consult before the meeting or enable the participation of the community during the Conference. Yet although these two Rio Declarations are mostly noble but empty words, they may serve to remind the signatories that they said they would act.

While the WHO High-Levelers were holding their 5-Star meeting, a few patients and frontline health workers from the Bronx (New York) began raising their voices within the new 'Occupy Wall Street' movement. Connecting the health conditions and services in the community with the growing inequities of society, the term "OccupyHealthCare" began to circulate on social media including Twitter, Facebook and blogs. Quickly, a few people in Africa, Asia, Latin America and the Pacific realized that there are similarities and common cause between their communities, from the Bronx to Borneo. The social determinants of health are now beginning to be discussed by those around the world that live with the realities that the WHO and Ministers in Rio were talking about, and making Declarations on.

This is an opportunity that should be seized. Together and globally. Perhaps never before has there been such a chance to spark a broad based, diverse movement of right to health advocates and community activists around the world. Crossing over the silos of specific diseases and health programs, bridging the gap between the North and South, 'Occupy HealthCare' is a term that can unite communities wherever there is hunger, poverty, discrimination and other determinants of poor health. We all should get involved and participate. #OccupyHealthCare is a great first step forward, together.

It's not rocket science. It doesn't take a higher degree in global economics to understand the current trends. Hard times have come for 90 percent of the world's population. For those who are ill, or may become sick in the coming years, hard times may be catastrophic and deadly.
No longer can we depend on international donors. Nor can we trust in on our governments to honor their obligations to provide the health services we need. No longer can we expect our 'leaders' to lead on making the Right to Health a reality for all. From the recent Hi-Level Meetings at the UN, it's evident that the needs of the lower levels are not the interest of the few who decide policies.
In these times there is really no alternative: communities must rapidly develop the capacity to respond to cut backs, stock-outs and close-downs. The urgent need is to empower ourselves, our peers, our families and neighbors as the first step towards our communities taking a greater role in treatment, care, prevention, education and advocacy.
It's now vital to discuss, share and explore how to, collectively, get past all the jargon about "community empowerment" which too often comes from writers in the Ivory Towers and not the community. What practical first steps can be taken by individuals? How to power-up people to power-up their community? How to locally, within many countries, OccupyHealthCare? Together, let's learn Rock-It Science.

What a sham! The UN has spent a year and hundreds of million of dollars in the so-called effort to confront the global epidemics of non communicable diseases (NCDs), including cancer, diabetes, stroke, heart and lung diseases (and mental health although backseat). We have watched the process of organising a High Level Meeting, to be held on the 19-20 of September in New York. We had some hope that they would learn from the similar UN process that HIV/AIDS went through in 2001, which led to a global response to the pandemic that has saves millions of lives, and led to the creation of the Global Fund. However, this NCD UN process been led only by Governments and a half dozen international NGOs with vested interests, has not had any patient or their communities civil society participation, and has been influenced heavily by Tobacco, Junk Food and Pharma industry. The 'Political Declaration' that will be signed at the Summit is a shameful document. Only empty words recognising the problem but not a word of engagement to begin to solve it. Not even a goal or any targets. A biilon or two poor people have been sold out by conflicts of interest and the incompetence of the UN and WHO. Below is the link to the NCD Alliance, and to the Declaration - read it and weep for the millions on people who will suffer, needlessly. The positive 'spin' of the Alliance is also shameful - again they seem more interested in setting up a WHO-linked Partnership (their key 'ask' for the past year) than with advancing the right to health of those in need.
Shameful sham of a summit. We lose, globally.
http://www.ncdalliance.org/node/3511

Some of us at IMAXI have been following the process of the UN High Level Summit on NCDs the last few months. Dozens of blogs, hundreds of comments and tweets have been shared by many people directly impacted by this UN effort to scale-up the response to Cancer, Diabetes, Chronic Hear and Lung diseases. Many of us already dealing with HIV or MDR-TB are also extremely vulnerable, and those in need of serious pain-relief risk suffering more. We all demand an outcome to this process that is not just more empty words, but has targets we can hold governments to account with. Even though we have some points to work out with the NCD Alliance (see http://bit.ly/o8aesL ), we now want to support their efforts to secure a real and accountable outcome from this High Level meeting of all the Member States in September. ...read more...

"Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners."
I found this sentence as banner on the website of the Society for Participatory Medicine http://participatorymedicine.org/ and I like it. Although this Society is focused on North American 'e-patients', participation is what is needed everywhere. In most of the world, there are very few 'e-patients'. In fact, very few 'e-anythings'. ...read more...

In many ways UNAIDS has broken new ground for a UN agency including in having civil society representation on its Board (the Program Coordinating Board). But its system of selecting Board Members, now taking nominations, is old style elitist selection not an open and transparent election. What to do? Can UNAIDS4ALL help open the Board to democracy? Why can't PLHIV elect their own board members directly? Why have non-PLHIV decide who speaks for us? Any ideas?
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The UN High Level Civil Society Hearing on Non-Communicable Diseases (NCDs, such as cancer, diabetes, chronic lung and heart disease) will be held later today 16 June. Coming right after last week's High Level Meeting on HIV, the contrast between these UN General Assembly processes is like night and day. At the HIV meeting, a broad base of civil society, including PLHIV, were present to raise their voices and push for universal access. The final declaration includes promises by the Member states to increase efforts on prevention, treatment and care, and although missing some key points, the Declaration offers written commitments to the achieving 80 percent of universal access by 2015. Hope has been raised for millions of poor people without access to treatment and care.
Over the last few months, we have been following the UN process for NCDs, and have serious concerns about where this is going. Shockingly, the aim of the meeting is to set in motion a global plan to only promote "Prevention and Control", and does not offer any hope for Treatment and Care to millions of poor people struggling with life-threatening NCDs. In all the UN pre-meeting documents, even a long term goal of universal access is not mentioned. It appears that the organisers exclusion of patients and community organisations from being meaningfully involved was intentional, so that no voices would be raised about the conflicts of interest within the organising group, the preeminence of pharmaceutical enterprises, the absence of palliative care, or no mention of accountability among many other bad policy points.
We must Speak-Up!. Today. It's urgent that this Civil Society Hearing gets the message from the community, from the bottom-up. So go online and send a tweet with what you need/think to @UN4ALL or @NCDmob and use the hashtag #MMM2Un. Pass the word to comrades not online to send SMS to: +919673205466 (IN) +27781324207 (ZA) +41787597991 (CH).
Speak-Up for the Right2Health and universal access to treatment and care for people with NCDs and any life-threatening or chronic diseases.
Watch the Hearing webcast: http://www.unmultimedia.org/tv/webcast/index.html See the Agenda below and see the many key points that are missing!

The United Nations High Level Meeting on HIV has promised that 15 million people be on ARVs by 2015, over double the number of today. As with past promises and pledges, this one will probably just be another target that is missed. But it is clear that many more of us now have treatment that didn't a few years ago, and some are beginning to live longer than they ever thought. We have lifesaving ARVs, but most of us can't afford care for the many other life-threatening diseases that we also face, including cancers, diabetes, serious lung and heart disease. These are some of the non-communicable diseases or NCDs that cause death and suffering to millions of people in both developed and developing countries.

The UN has another High Level meeting process at present. This one is about the NCDs. Unlike the HIV High Level meeting, the NCD meeting has only limited involvement of the communities through grassroots CBO/NGOs and virtually no patient participation. Its a top down gathering for UN agencies like the WHO, governments, the pharmaceutical industry and a few multinational international NGOs under the banner of the 'NCD Alliance'. PLHIV and other peoples living with life-threatening diseases, and their care-givers, families and allies are not seen as part of the process but more like the problem. Today, poor patients have no say at the NCD meeting. Bottom-up reality will not be heard: "I'm alive thanks to ARVs, but dying without insulin".