August 17, 2006

Abe Janzen, MCC Alberta Executive Director

I’ll miss the closing ceremonies tomorrow. It has been an exhausting week, but very educational. Makes me hope that the constituencies of MCC want to know a lot more about AIDS, and that we in MCC can engage them even more than we do now. It’s just a totally compelling scenario. AIDS exposes us to all the gender, discrimination, peace building, refugee situations, nutrition, food security, water access, human rights, prison ministries, cultural learning international trade issues… all of which, either directly or indirectly, MCC works with.

We ended the day, with about 4,000 others in a public square downtown, by attending an hour-long vigil for those who have died of AIDS since the virus first became known 25 years ago. It was a moving ceremony with singing, poetry, fake candles, and the listing of names. The mayor, the Ontario Minister of Health, and Tony Clements were all present as well. References were made to the marginalized populations who have born the brunt of the epidemic for so many years.

The first session I attended today was called “The Price of Inaction”. Mark Heywood, from South Africa spoke, along with a young woman from Russia, Alexandra Volgina, Musimbi Kangoro from Kenya, and Kerrel McKay from Jamaica. Heywood has to be about the most articulate and well prepared speaker, next to Stephen Lewis, at the conference. He said that more people now die in South Africa between the ages of 20 and 30 than between the ages of 60 and 70. Kerrel’s point was that AIDS now has become the face of a young person and that all of us need to be very conscious of involving young people in this work. 50% of all new infections are now happening to people under the age of 25. Almost 2,000 children and 6,000 young people become infected every day. In Russia, the majority of infections are still coming from intravenous drug users. In Ukraine, it’s the same story; and Ukraine now has the fastest growing infection rate in Eastern Europe. Another point, among many, made was that we may be spending a lot of energy on new research, and not enough on using the knowledge and tools we already have. We know how to prevent mother to child infections, pretty much, but only 9% of mothers are now accessing a medication that we already know works. No wonder people become as indignant and impatient as Stephen Lewis and many others.

There was a strong emphasis on social mobilization during this session, as compared with some others where research plays a much stronger role. In Nigeria, a woman has been on trial now for 6 years, and the judge will not even allow her inside his court room because she has AIDS. There is a lot of stigma out there, everywhere… story after story. The discrimination becomes internalized, causing the people who should have access to good legal support, basic health support, any treatment that may be available and useful not to access it. It is the stigmatization and discrimination, and the internalization of those forces, that keeps people from going to be tested and asking for information. They are dying far too soon and far too needlessly. In Russia, Alexandra says the evidence is clear that the government’s emphasis on the criminalization of drug use has just increased the spread of AIDS and that the idea of “harm reduction” needs to be encouraged as government policy around the world. Harm reduction programs (like the safe exchange of needles among drug users who are going to use drugs anyway) is not acceptable to the Americans, but it is acceptable to a lot of others by now.

Mark Heywood challenged us all to use World AIDS Day, December 1, as a day to launch a new theme of "Holding Governments Accountable". A lot of promises have been made, but few are being kept. Stephen Lewis, at a later session today, read from a UN Resolution of June 2006, that reads…”all people at all times, will have enough food for their daily dietary needs”. Yet, he says, far too many governments, while signing on to a declaration like this, do very little to follow through and make this happen.

A 13-yr old girl got up during the question period and said that in her experience in school in Canada, there is very little information about AIDS being made available to students at any significant level of learning. Maybe there is a role in the school systems of North America for an organization like MCC.

The second session I attended was “HIV, Gender, Development and Poverty”, moderated by Stephen Lewis.

This was one of few sessions that directly addressed the broader issue of nutrition, general health, poverty… and yet, these are still the most basic pieces making the war against AIDS so difficult to win. Robin Jackson, of South Africa, but working in Rome, presented some findings from 7 countries in Sub Saharan Africa - 15,906 households. They found that about 60% are borrowing money just to eat, which leads them into debt they cannot repay, and that where HIV is present, the status of having chronically ill people in the household makes them even more food-insecure, leading them to take severe measures like borrowing money they will not be able to repay, just to eat, selling assets that leave them destitute, and often taking even more severe measures. She also said that when such households are headed by a woman, the problem is even worse given the difficulty a woman, usually a single mother, has in providing resources for the family. Her point was that AIDS multiplies the affect of poverty on a family, and that in such situations, agencies that provide food assistance are very much needed.

A person with HIV apparently needs 10% to 30% more energy, and a child with HIV needs 50% to 100% more energy than otherwise healthy people do. Nutrition, when it is lacking, accelerates the impact of HIV, and we saw examples of food security and income generation programs in Swaziland that have become very successful at food production, engaging people in solving their own problems, and providing at the same time some of the urgent social care that AIDS families need.

A third session talked about Human Rights in Ukraine, China, Zambia, the Dominican Republic, and Guyana. In each case, the point was made in different ways that human rights, access to health services, discrimination by health professionals, fear of losing a job or of not being hired if you know your status, lack of confidentiality, and many other abuses or neglects, contribute to people not accessing services and not having adequate information… leading to early deaths in far too many cases. Abuse and harassment by police, families, and health service centers is common. In China, for example, it was said by an AIDS patient that, "Doctors wore surgical masks and gloves with me, but not with other patients. In winter, all other patients received coats, but not the AIDS patients." There were more stories, and I picked up a pile of short stories from the Human Rights Watch about the denial of basic human rights in many, many countries to those with AIDS, which, in every case, leads to potential spreading of the disease, potential early onset of AIDS, and early death.

Apparently pain medication and palliative care for AIDS patients who are dying is hardly being addressed, anywhere, and yet, a person in the advanced stages of AIDS is often in a lot of chronic and severe pain.

The last session I attended was about older caregivers and the attention grandmothers and others need from government and from all of us. Vietnam, Zimbabwe, and South Africa were presented to us, where, in each case, older caregivers have or are organizing their own support groups and systems so that they themselves can survive what is an almost unbearable and impossible job. They are the ones who are providing care, counseling, food, school supplies, and much more for children, for sick neighbors, or for relatives … and they are exhausted. The Stephen Lewis Foundation brought 100 grandmothers here, from Africa, to meet for 3 days with 200 Canadian grandmothers. To build solidarity, to inform, to build community and support. And that support is critical… everywhere, in any way it can be offered.

People living with HIV suffer from self imposed and externally imposed stigmatization and loneliness. They die long, painful deaths. Caregivers and those living with HIV need support, grace, and a sense that they are normal people. When that begins to happen, and when nutrition and food is available, then the need for the medical work and for the research will diminish.

I think the Conference spoke loudly about the fact that Women and young girls are becoming the most neglected and most victimized people in the AIDS epidemic. It spoke about research. It spoke about needing more money, but also about making sure the funds we now have are used very well and effectively. There is no patience at this conference for any dollars wasted or too easily spent. It spoke about human rights and poverty. It spoke about the fact that young people, more women than men by far, are now the face of the virus, and it pushed governments and NGOs and all of us to keep this agenda very urgently and very actively at the forefront. I am very glad to have been able to be at this Conference. It confirmed for me that Chris Ishichei, of the Faith Alive Clinic in Nigeria, is doing a lot of things right and has understood the complexities and how to work with many of the aspects, very well. It also confirmed for me how complex AIDS is, and how broad our approach needs to be in working with it. It spoke about no one being allowed, anymore, to work alone… of the need for all of us to work with each other, to almost demand cooperation from each other, and to be creative in doing this. It spoke about making sure that the learning comes from where the need itself is. I am so glad MCC is in this, and for the leadership of people like Sarah, Dave, our boards, our staff and RG people, our partners … and I think the GAR program should be expanded, if anything, and that our work in education, fundraising, and engaging of partners and supporting constituencies needs to continue … urgently…creatively … wherever we can work.

The next conference happens in Mexico, in 2 years. People like Stephen Lewis and Mark Heywood, and many, many others have high expectations of us all in the meantime, and maybe that is what the conference is about now. Clinton said that years ago, this conference was needed to call the world’s attention to AIDS and that the pandemic is real. Today, he said, it is needed so that we work harder and smarter and more cooperatively and so that we hold each other accountable for our work, our research, our education… and that we keep moving forward, as aggressively as we can in all areas, “so that people who don’t need to die, will stop dying”. 8,500 die every day now. At least, and maybe more.