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HIV/AIDS drugs: we must fight the system

Thu 23 Jun 2005 In: HIV

I commend Body Positive on its response to Pharmac's unacceptable delay with the approval of HIV treatment drug Kaletra. An approval period of nearly two years for a drug that has already been approved and in use in Australia, England and USA for over five years is inconceivably bad, but maybe not when you consider the one and only factor that holds the approval from moving forward is money. Money versus life, always an interesting debate. As previously stated by Body Positive's Bruce Kilmister I was required to pay approximately $7,500 directly through the New Zealand health system during the first six months of last year in order to access Kaletra, the last drug option available to me. After six months of lobbying they eventually approved the funding based on ‘exceptional circumstances.' Maybe having the label as an ‘AIDS activist' helped. As stated in earlier media releases I eventually made the extremely difficult decision to leave New Zealand and move to England in order to access better treatment options. Having been born in England I had this option available to me whereas so many other HIV+ people living in New Zealand don't have that luxury and must leave their care in the hands of Pharmac. Within three days of arriving into London I had my first of many appointments with my new HIV specialist, George. This was prearranged through St Mary's Hospital in Paddington, London, prior to leaving New Zealand. My first visit was to be one of the most emotional moments since being diagnosed HIV+ some 11 years ago. George, an infectious diseases specialist, only works with HIV. He has worked extensively with HIV in San Francisco, England and Spain. I had the most thorough medical and every test possible. The results were rushed through so he could check all blood levels and ascertain if my existing medication was appropriate or should changes be made. I was very nervous as I was not sure what had happened to my viral load or T4 levels since leaving New Zealand especially with all the stress and emotion of moving and the guilt of dragging my partner to the other side of the world. I was also very apprehensive as to whether my existing medication was effective based on their vast knowledge, experience and many treatment options. It was all good news. My viral load was still undetectable although I was corrected for using the term ‘undetectable' as it has too many negative connotations. My T4 count had increased. However he made one immediate change to my medication which I found very interesting. Read on... Like many HIV positive people the issue of muscle wasting especially in the face is a major issue. I had made up my mind prior to leaving New Zealand that the money I made from selling my car would pay for facial fill when I got to England as I was under the impression that I had lipodystrophy in my face. To be told that there was no need for me to pay for the procedure as it is possible to have Neu-Fill or Aquamed funded via the UK's National Health System was an added bonus. That was surprise number one but then the big shock. I was adamant that I was suffering from lipodystrophy in the face but was told that the slight wasting was not lipodystrophy but due to my age! I was always under the impression, as are many other positive people, that Protease Inhibitors cause lipodystrophy. But was told categorically that lipo is not caused by PI's but prolonged use of AZT and/or DDI. I had been on DDI for some time. George's comment ‘that must be hard to take on an empty stomach and as you think you have wasting in your face, why don't we change the DDI for Tenofovir. Much easier to take, less side effects and does not cause lipo'. So my preconception of what causes lipodystrophy was crushed as were many other misconceptions. All my other tests were normal but I was informed that a dietitian, optician and dentist was available to me free of charge at any time should they be required. Presently there are over six other drugs available to me should the Kaletra, Abacavir and Tenofovir combination fail plus a further three drugs in the approval system. George issued a prescription for three months supply of medication which I collected from the pharmacy in the same building. No justification or forms to be completed as to why I wanted all three months at once. The cost of three months supply, including additional drugs Acyclovir and Loperamide and a super multi vitamin, was zero pounds. Not even a part charge. Kevin and I left the hospital and had a coffee in a cute little café across the road where I burst into tears and sobbed for a good 15 minutes. The pressure of six months fighting the system in New Zealand and six months planning to move to England, the actual move, homesickness and the fear of a new doctor and hospital was lifted and I once again felt safe. So my advice to those people infected and affected by HIV in New Zealand is to join forces and fight the system as I did. You can make a difference if you work together. Body Positive, Positive Women, NZ AIDS Foundation and Treatments Action Group: you need to join forces to get what you are entitled to. I now have choices including the possibility of returning to New Zealand but being treated via England, however you have my assurance if I return that I will be fighting the system for all HIV+ people in order to get what we need to stay alive. So if you have the energy, motivation and fight within you maybe we can work together. On my many visits to St Mary's, I often think about Matt Whyte and other friends I have lost to HIV and wish they could be walking with me on this journey. Footnotes: I chose not to have the Neu-Fill as I decided that at 51 I wasn't looking too bad after all. Also, would believe that HIV+ people in England complain about the service they receive!?! Jonathan Smith - 23rd June 2005    

Credit: Jonathan Smith

First published: Thursday, 23rd June 2005 - 12:00pm

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