Zackie Achmat on Activism

On Wednesday 14th I went to listen to a lecture by the legendary  South African HIV+ activist Zackie Achmat organized by the Monument Trust at the National Gallery, London.

Zackie was a founder of Treatment Action Campaign the South African activist group that took drug companies to court and made them either reduce the price of HIV medications or allow South African governament to overcome patent rights and buy cheaper generic drugs.

During this battle Zackie, who could have afforded to buy treatment, refused to take it, and nearly died. He was saying: ‘Until everybody will have access to treatment in South Africa, I will not take it’.  It is very rare nowadays to find this level of commitment in action.

TAC  continues being at the chore of the SA response to HIV. Supporting the community in developing treatment literacy and campaigning and negotiating with the Big Pharma for more options and better drug quality. TAC has more then 20.000 volunteers and 60% of them are black women from some of the poorest sections of society in South Africa.

Zackie lecture centered on the state of education in South Africa. Its focus wasn’t HIV, even if HIV was mentioned several times.

During the Q & A at the end of the lectures, one of my colleagues asked Zackie to speak about the process of becoming an activist. What are the important elements?  He pointed out three things (what follow is a summary in my own words):

1) Principle. As an activist you have to have a strong commitment to your values.

2) Taking risks. You need to take risks. Know when and how to do it in order to be most effective.

3) Self education. You need to educate yourself. Read. Keep informed.

Vienna October 2009

I have just terminated attending the second Leadership and Accountability Programme Committee (LAPC) meeting to prepare  for the next International Aids Conference. It has been 2 days of hard work. Yesterday from 9 until 7 pm and today from 8,30 until 4. But I am amazed about how much work we have  done. It is very inspiring to be locked up in a room with such a bunch of committed people.

Our job was distributed between planning plenary sessions (the massive sessions at the beginning of the day where everybody participates), working on 10 sessions which are called ‘Non Abstract Driven Sessions’, and 10 Skills Building Sessions.

The final word on the plenary sessions is given by the Conference Coordinating Committee, and the basic outline of 9 sessions were already given. However we were able to recommend speakers and also to signpost  the topic of 3 plenary sessions. I also really pushed for the recommendation that each plenary should have a positive speaker. I am very happy about this. I have also made a recommendation for a speaker for a plenary session. She is an amazing activist…I will say no more and keep my fingers crossed.  But I have let other positive women from other committees know about her so that they can also support her.

The ‘Non Abstract Driven Sessions’ we planned are also really interesting and include an Open Call for an elected leader to come out about their HIV status. This would have an incredible impact on stigma in countries with high prevalence,  especially Africa. We also have sessions about developing leadership in ‘Key’ population( I have learn that ‘key population’ is a better word for ‘marginalized’).  Other very exciting ideas are:  a session were the youth will hold leaders accountable and another one about De(criminalization), which will include drug use, sexual transmission, sex work,  and really explore the relationship between criminal law and public health.

The 10 skills building sessions were divided into two groups: 5 focusing on accountability skills  and 5 on leadership. I am really happy because we were able to push on the agenda a  ‘Leadership Skills for Women” session, and we hope to have it facilitated by a network of positive African women. Another skill building session we have put on the agenda which is very close to my heart  is leadership skills for drug users, which we hope we can also  offer in Russian.

Those are the highlights of the work we have done, but I tell you, we have been discussing for something close to 18 hours (and probably more since the discussions carried on during dinner lunch and breakfast). My head is still buzzing.

After the meeting I decided to find out the route to  Pure Yoga, the Ashtanga Yoga Studio of Vienna. I studied the map, took the underground, walked around a bit, and now I know the way. Tomorrow, before getting on the plane, I will treat my self to some Austrian Yoga. So I know that when I will get back here for my next meetings, and  maybe even during the conference, I can squeeze a good yoga practice in. That’s all I need to be happy…

Not All Is Well On The Western Front

Wow what a week…It felt like I never stopped. I have just arrived in Vienna for my second meeting for the Leadership and Accountability Programme for the next International Aids Conference.

On Thursday I attended the BHIVA conference, and Gus – who is holding the position at the moment- announced me  as the new Community Representative. The reality hit me that it is going to be hard work, and I will need a lot of support from the ‘community’ I need to represent. I hope that my election will bring about some fresh air. To begin with, it is the first time that a woman, and somebody who wasn’t born in the UK is elected.

I thought that a first step to start to get a feeling  of what the “community’ of people living with HIV believe is important,  was to ask them what I should highlight during this meeting in Vienna, and what they thought could be good topics for plenary sessions. So I posted my question on the UKCAB web  forum.

The response I had is that it is vital to highlight that even in the so called ‘High Income Countries’, there is large potential  for improvement. A lot has been achieved, but there are still huge problems for certain sections of the population to access treatment and testing (migrants in particular), and that travel restrictions an widespread stigma and discrimination still hugely impact on the quality of life of people living with HIV. Since the conference is set in Europe, it should focus also on the realities of those of us who live in Western Europe. Not all is well.

On a similar note, something that really shocked me at the BHIVA conference was what was said during the presentation on the guidelines for treatment of co-infection with hepatitis C.  Somebody asked  how many people are accessing  treatment with pegylated interferon and ribavirin. The answer was shocking: only 50% of those with co-infection are accessing treatment. And who are the excluded? Injecting drug users, who are deemed incapable of sustaining such a difficult treatment. But have they thought about how to support drug users through treatment? Have they looked at solutions? I don’t think so. I don’t think a lot of medical professionals really believe that those are patients who deserve treatment like all the others. It is clear that even in the UK if you are, or have been an IDU, you can be denied your  right to health.

Executive Community Representative

I am proud to announce that I have been elected Community Representative for BHIVA – British HIV Association.
BHIVA is a body manly constituted by HIV consultants and is responsible of all the important decisions regarding the medical care of people living with HIV in the UK
For example BHIVA writes every year updated treatment guidelines. Recently they published a booklet in collaboration with the National Aids Trust on guidelines for the detention and deportation of HIV positive migrants. Those guidelines state that nobody should be taken into detention without their medication and if deported they should be given 6 months of medications and contact information about treatment centers in their country.
BHIVA is a very influential body and I am really grateful to all the members of the Community Advisory Board who showed their trust by voting for me. I will work very hard to represent the views of us who live with HIV, to do this I will need your support and input.

Returned to Risk

Last week I went to the launch of ‘Returned to Risk’ a report by the Human Rights Watch on the deportation of HIV-Positive migrants. It was held by the All Party Parliamentary Group on HIV and AIDS at the House of Common. The report highlighted the unfair treatment of HIV positive migrants, not only in the UK but all over the world.

In Saudi Arabia, for example,  all migrants are compulsory tested for HIV. If they are positive they are imprisoned and then deported without provision of care. This is done not only with HIV-positive people, but also with those infected with Hepatitis C, B or TB.

South Africa has also a really poor record of treating immigrants. Often migrant mine workers are deported without treatment if found HIV – positive or with TB. They are viewed as a disposable asset. Even if it is  against the young South African constitution. At the moment there is an estimated 3.000.000 Zimbabwean refugees in South Africa. 17.000 get deported back to Zimbabwe every month. One wonders how many of those forcefully sent back are positive, how many of those will die because of lack of access to medication?

At the meeting there was also a courageous  Malawian woman, Ivy,  currently living in the UK and expecting to be deported soon. Ivy is on third line HIV drugs, which are impossible to find in any developing country. She voiced her fear and anger at the prospect of being returned to a place where she will not find the medication she is on and will probably face illness and death. Ivu has been volunteering for a number of organizations and charities in the North West of England contributing to our communities for the past 6 years. The home office told her “Go and continue your good work in your country”.

The Human Right watch states in this report: ‘ The principle of non-refoulement, articulated in refugee and human rights law, establishes an absolute prohibition on the forced departure of a person to another state where there are substantial grounds for believing that the person would be in danger of being subject to torture or other cruel, inhuman or degrading treatment or punishment’

However the UK government is obviously not listening, because while it preaches its commitment to the Millenium Development Goal of Universal Access to HIV Treatment, it still doesn’t guarantee HIV treatment to failed asylum seekers in the UK, and deports people with HIV to countries where they will most certainly die because of the lack of appropriate medical care.

The African HIV Policy Network is running a campaign to stop the deportation of HIV positive migrants: Destination Unknown. You can sign the petition here.

It was great to see that discussion on this crucial issue for people living with HIV was brought up, especially in a site as the House of Common. However I was quite disappointed by the fact that those who attended the meeting were the usual people from the HIV sector. Once again we were preaching to the converted. If we want to move forward in securing access to HIV treatment for all in the UK we must work harder to reach those who are not already on our side. How can we do this?