At the Pan Pacific HIV/AIDS conference this morning HIV positive health activist and researcher Michael Stevens made an impassioned case for the unacceptability of the system by which New Zealand makes subsidised drugs available for HIV/AIDS treatment. The following is a slightly edited version of his address. In the context of this conference, where so many delegates come from countries where medical care and access to effective HIV medication is so much worse than we have here, I feel almost embarrassed to be pressing my claim that those of us living with HIV/AIDS in New Zealand need better and swifter access to medications. Compared to many of the states in the Pacific region the level of care and access to medication that I can receive in New Zealand is excellent. However, without in any way wishing to diminish the difficulties those of us living with HIV from less well-resourced nations have to go through, access to effective medication in this country is highly problematic, contested, and an on-going struggle. It involves aspects of political will, public policy and financial constraints, as well as a growing level of public discourse that relates to health and responsibility in general and in our case relates to just why we deserve to have these, often expensive, medications funded at all. When I was diagnosed with HIV in 1987, the basic trajectory for anyone infected was clear. You could expect six to ten years of reasonable health, and a period of one to two years of sharp deterioration caused by opportunistic infections such as pneumonia, Kaposi's Sarcoma, wasting, tuberculosis, cyto-megalo virus, or any combination of these or other conditions. This was the fairly well known and understood prospect those of us with HIV faced at that time. We were getting ready to get sick, to get sicker, and then die. We knew this, and to a large extent our lives were built around this prospect. This is still the prospect for most people infected with HIV who do not have access to medications now. I did in fact start down that road in the early 1990s, with a growing number of serious opportunistic infections, and an ever-decreasing CD4 count. I was on AZT treatment alone for a while, then AZT and 3TC combined, but this seemed to do little. Then, in the mid '90s everything changed. I can recall a good friend visiting from the US, a nurse, telling me of these new wonder drugs called protease inhibitors and how they had been pulling people he knew back from the brink of death. As I was still fairly sick at this time I found it hard to believe, I didn't want to raise my hopes that there could be some possibility of changing this disease trajectory that I had become used to. I was scared of my hopes being raised only to have them dashed. I was fortunate, I was placed on an agressive drug treatment regime using the new drugs very soon after they became available here. It meant that initially I was taking 47 pills a day and that, combined with trying to recover from the various opportunistic infections I had had, meant I was often too exhausted to consider doing anything else. But my doctors and I could see that the medication was making a difference, was in fact leading me away from the clear trajectory to death that HIV infection causes. I was getting another chance. The drugs basically worked well for me, but I have been through the fairly common pattern of having them work well for a period of time, then having my virus become resistant to them. This of course means that I, and the others in my situation, need access to newer medications, and to a wider range of them over time. And this is where the troubles begin. In New Zealand medication is heavily subsidised by the government. PHARMAC, the body charged with overseeing how this money is used and what medications are to be purchased, has a process whereby drugs are ‘benchmarked' against other similar drugs. This system works well on one level, it forced pharmaceutical companies to cut their prices somewhat. Every year PHARMAC boasts of the savings it has made, savings that I for one would like to see put into wider and better access. However, the truth is that this process has become a farcical game, played out between bureaucrats in Wellington and the pharmaceutical companies. The game is set up like this: a new and effective medication to combat HIV is launched, generally in the USA. The pharmaceutical company applies to have the medication approved for use and government subsidy in this country. Now the game begins. Typically, we expect the process to last two to five years before these medications come through the pipeline. When you have a condition like HIV or AIDS, where the virus can mutate and become resistant to treatment fairly quickly in some of us. This is simply not acceptable. For those of us with limited treatment options left, waiting for PHARMAC to go through this process every time a new treatment becomes available, is a nightmare. I know people who have been forced to spend their savings waiting for PHARMAC to approve government subsidies of new and effective treatments. This is not acceptable. There are people here at the conference today, originally from New Zealand, who have been forced to pack up their lives and move to other countries to gain access to the medications they need. This is a decision I nearly had to make myself a number of years ago. This is not acceptable. I know of people attending this conference today who have to make regular trips to other countries for their medication, at great personal expense. This, also, is not acceptable. I know of people who have died while waiting for medications to go through the approval and funding process. Again, this is not acceptable. I am not so naïve as to imagine the pharmaceutical companies themselves operate out of benevolence and love for us. I know they are driven to make profits, and they do make huge profits on HIV treatments, often when the initial research has been publicly funded. I know that the New Zealand government has a limited budget to operate on. But the decision making process that is used in this country with regard to accessing new medications is one designed by bureaucrats who have no understanding that the delays they enforce while they go through their process results in our sickness and death. This is stupid, when in fact we could be well and working and contributing to the country instead. Some of us have children and we want to be there for them. Others of us have parents who need us for care and support. The cost of providing effective medication to keep us employed and productive - to keep us in our roles as parents or as children - this cost is, I contend, negligible, especially when compared to the costs our sickness and then death will bring. What makes it particularly galling as well as stupid and irrational is that in fact we know that sooner or later they will in fact approve the new medications anyway. In the meantime those of us who need them suffer the anxiety of wondering if we have now passed the point of no return regarding our health. We wonder if we could hold on for a few more months, perhaps then the new medications that we need will have been approved and we will be able to live for a few more years. It is not only those of us who have HIV who are caught in this bind. Many other New Zealanders with life-threatening illnesses go through this same idiotic round of anxiety and suffering. Earlier I mentioned political will as one of the factors that intersects with this issue. The political will to act on this matter is lacking. From any party in parliament. We get nice words and sympathy, and we are told that we shouldn't complain so much, look how much better off we are than others – but that does not address this issue. There is also I think a lack of political will amongst those of us living with HIV today. There is less activism and sense of ownership and outrage about the way these matters are treated. Perhaps those of us who have been involved in these fights before are now tired, or dead. Perhaps it will take some of the newly infected here in New Zealand to realise that in fact their treatment is below what it should be, because of government inaction and poor policy decisions. There is also a shift in how sickness and health is seen by the public. The attitude of blaming the victim seems to be increasing across society. While I am a strong believer in taking personal responsibility for our own actions, I also know that collective action and support is required in combating a problem such as HIV. The current growing level of discourse that seems to say “It's your fault, why should we pay to help you?” is growing. This is ultimately short-sighted and ignores the reality of much illness, but it makes those who say such things feel better. It also makes the condition of those of us living with such illnesses even harder. Not only do we have to deal with the disease, we are supposed to now feel guilty for having it in the first place and for needing assistance in dealing with it. HIV/AIDS is an exceptionally volatile infection, it is unlike any other disease that exists. It combines both sex and death in the popular imagination, it leads to moralising and sanctimonious hypocritical judgements, and these attitudes are to some extent displayed in the level of public discourse around our right to effective treatments. This is simply unacceptable in a developed state that claims to put the health and well-being of its citizens as a priority. Access to effective pharmaceuticals in a timely manner is not just a ploy of pharmaceutical companies to increase profits. It is matter of life and death for many of us. It is our right. We need to fight for it, we need to work for it, and we need to do so proudly and openly, with no shame for what we ask. Michael Stevens - 27th October 2005