London Trip November 1999

The main purpose of my visit to London was to attend the ATP (Aids Treatment Project) Symposium on Immune-restoration and immune based therapy. But it was also a chance to renew acquaintances with people I met at the summer conference “Getting It Right,” as well as an opportunity to spend time with two of my best friends.

Monday I went to Chalk Farm Oasis to meet Brad the chair of the project. I thought I had picked a bad time to visit as it was the day of their General Meeting. I thought that I wouldn’t get a chance to talk to him and that I would be in the way. I couldn’t have been more wrong. Rarely have I been made to feel so welcome. Not only Brad but everyone was so open and friendly. I was encouraged to participate in everything, including the meeting itself.

Chalk Farm Oasis is centred around ‘The Living Room’, a very informal, ‘free and easy’ drop-in facility which is open every Monday from 4.00pm. Like our own drop-in, The Living Room offers a comfortable lounge with TV, music, papers, periodicals and table top games. There is a free meal every Monday and free tea, coffee, soft drinks and snacks. Information and advice is available including access to a library of journal articles, leaflets, books and videos. It also offers opportunities to meet others affected by HIV and AIDS and a ‘listening ear’. A counsellor is available as is a chaplain for those specifically seeking such assistance.

The Chalk Farm Oasis ITAP (Information Technology Access Project) and TFEP (Training For Employment Project) provide useful models to slot into our own Vision 2000.

On Tuesday my friend Terry took me to visit the longest running HIV support group in London. Riverhouse is situated close to the river Thames not far from the Tate Gallery. Surrounded by parkland, it makes an attractive place for lunch. They charge a modest few quid for a three course meal – a bit more for guests, but excellent value for money. Riverhouse is a pleasant place for social contact and access to complementary therapies and information.

The ATP (Aids Treatment Project) took place on Wednesday at the Royal College of Physicians in Regent’s Park and consisted of a very full day of six sessions. The day commenced with an introduction to immunology, immune-restoration & therapeutic options (Stefano Vella,Rome and Jackie Parkin, London). Afterwards Felipe Garcia, Barcelona, spoke on the role of HAART and immune response. Other speakers in this session were, Paul Racz and his wife, Klara Tenner-Racz, Hamburg and Clive Loveday, London.

The slides of laboratory tests shown by the German doctors were hailed as a privileged view of the latest research developments in the field.

However, it was the contribution by Franco Lori from Rome that had the greatest impact on me. His subject was “Early intervention and control through pulsed therapy and hydroxyurea,” on which he is a leading world authority. This was impressive enough in itself but he went on to put this piece of research into the wider picture of overall treatment and control of HIV. The slides he used as visual AIDS summed up his address brilliantly.

I could not believe that he would be so generous as to let me have copies of these slides. However, when I plucked up the courage to ask him what I had to do to obtain copies of his slides he modestly replied “Give me your address.”

Much of the day was conducted in technical language ‘laboratory speak’ and with the added hurdle of speakers for whom English was not their first language it made for a long day of concentrated listening and note taking. But I enjoyed it. In fact, I got so carried away with Franco Lori’s plea for greater participation in trials from the United Kingdom that I asked how I could be involved. It was an embarrassing moment, because he had to explain that he was not asking for volunteers to take part in trials, but government money to fund them.

Despite my red face and tiredness it was all worth it. I had a chance to ask questions and to speak to some of the world’s leading figures in immune based therapies and the promise of a set of slides from Franco Lori.

Maurice

DRUG HOLIDAYS
(PULSE THERAPY-INTERMITTENT THERAPY)

LATEST NEWS

By Maggie Fox, Health and Science Correspondent SAN FRANCISCO, Jan 30 (Reuters) -

He is known only as the ``Washington patient´´ but a middle-age government contractor may be the living proof that an unorthodox approach to treating the AIDS virus may help a few patients control the infection on their own.

The patient, who lives in Washington, D.C., volunteered to try the approach known as intermittent therapy. The idea is to stop and start the strong cocktails of drugs that control HIV infection in the hope of eventually training the immune system to control the virus on its own.

Franco Lori (see “London Trip” above) of the Research Institute for Genetic and Human Therapy (RIGHT) in Washington first reported on his idea a few years ago. He tested three patients, taking them off their drug regimens until the virus bounced back, then putting them back on drugs for a while, and repeating the cycle.

In addition to standard HIV drugs, he used the old cancer drug hydroxyurea, which shows some action against HIV. One man known as the ``Berlin patient´´ has now been off his drugs for nearly three years and shows no virus in his blood at all, although he still has virus in his lymph nodes.

The man known as the Washington patient, who does not wish to be further identified, learned about the Berlin patient soon after he found he was infected with HIV. ``I had fevers, chills, a rash on my chest,´´ he said in an interview. ``It was evident that I was sick, but I thought I had strep throat or flu.'' But his doctors thought it looked like HIV and had him tested. It was. When he thought back, he realised he had been infected during a brief, unprotected moment of sex.

"Although it was awful to find I had seroconverted (the technical term for developing an infection), I caught it early," he said. "So I did some research on the Internet." He also started on drug cocktail therapy. "My philosophy was to hit it as hard as I could as early as I could," he said. But then he read about Lori, and Julianna Lisziewicz of Georgetown University in Washington and their work with the 'Berlin patient.' "I decided that, hey, I wanted to be all over this thing," he said. Georgetown University Medical Centre was just a few blocks away. "I just decided to drop in on them one day and started talking to them."

They explained to him their theory that stopping the pills could 'train' the immune system to recognise the virus better, and eventually help it keep the HIV suppressed on its own. "I figured if I could have my own body fighting it rather than these highly toxic drugs, it would be better," he said. He has now done six cycles of the intermittent therapy. Each time he stopped, the virus came back at a weaker level. He is now not taking any drugs and he feels fine. "I think I may have a cold, but that´s it," the patient said. Lori and Lisziewicz tried their regime in two other patients in Washington as well. One patient has had to go back on the drugs but the 'Washington patient' and one other seem to be managing the virus well.

They reported their findings in last week's issue of the Lancet medical journal, and are explaining them this week to a meeting of AIDS experts in San Francisco. They are the first to admit that their approach is not for everybody. They got to their patients very soon after they were infected, before the virus could do much damage to the immune system, and they carefully monitor when they take the patients off their drug regimes. “I know I am taking a chance doing it because my virus is able to come back up,”the Washington patient said. “But my hope is that their theory is correct and the immune system will keep this in check.” He is well aware that he will probably be infected for the rest of his life, and would just as soon spare his body the toxic side effects of the drugs.

“If my immune system can learn this disease and react to it, I think I am better off than being on the drugs,” he said. He wants to help in the fight against AIDS. “You want to be a foot soldier against it ... because it is a nasty virus.''

09:47 01-30-00 Copyright 2000 Reuters Limited.

“How to rebuild your immune system”
by Jon D. Kaiser

HIV Book Review of one of the latest additions to our library

This useful book is based on a previous highly acclaimed publication “Immune Power” Martins Press 1933 and promotes a healing programme based on aggressive natural therapies combined with current (1999) Antiviral Medications. It also takes advocates the use of emotional healing techniques both psychological and spiritual.

The basic theory put forward by Dr Jon Kaiser is that adding a program of natural therapies to the best of modern standard medical HIV therapy achieves better results than using either approach on its own. The data from a piece of small scale research would appear to support this.

The commonsense attitude of the author comes across and many of the important aspects about HIV are covered with simplicity and clarity. These include:

• Antiviral medication. A look at all the current antiviral HIV drugs with recommended dosages, side effects and helpful comments.
• Intestinal Health
• Body Cell Mass and the Immune System
• Protein & the Immune System
• Hormonal Therapies
• Preventing and Treating Fatigue
• Preventing and Treating Neuropathy
• Nutrition & HIV
• Herbs & the Immune System
• Exercise ? Stress Reduction
• Emotional & Spiritual Healing

The fact that the author is American and writes about projects in San Francisco, doesn’t pose any major problems. Although, it might cost you a fortune to dial some the helplines listed in the appendix on Resources ! But there is a good list of HIV websites.

What makes this book special is the use made by the author of his experience of dealing with over 1,000 HIV patients. It is their real life experiences that make the book an interesting read.

However, you don’t need to read the entire book to find it useful. The individual sections are complete in themselves and there are 12 appendices to dip in to as well as a comprehensive index to look up a particular drug or topic.

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1. if your viral load starts to rise-don’t panic - but do take it seriously.
2. get a new test straight away to find out whether it is an accurate result. Be sure to collect the test results as soon as they are available (within 2 weeks).
3. if your viral load is continuing to rise then changing quickly will give your next combination the best chance of success.
4. think about or find out why your current combination failed - resistance, adherence, drug absorption - or a combination of all three
5. choose the strongest combination you can for any salvage treatment, use as many new drugs as possible which are not cross-resistant to previous drugs.
6. monitor your new treatment carefully, preferably with a viral load test after 2-4 weeks of the change and then with regular viral load tests every 1-2 months. If you have problems with adherence or side-effects make sure you discuss this with your doctor. Always store blood for future resistance and other tests.
7. keep up-to-date on new treatments as they become available, especially through expanded access programs, but don’t necessarily rush to take them especially if they are the only new drug available.
8. keep aware of new treatment strategies which are reported every few months such as multiple drug combinations and drug washout periods.

IMPORTANT

Positive Lives includes articles and reports on latest therapies for your information only. It does not recommend or endorse any changes or stopping of your present treatment. All treatment options should be discussed thoroughly with your Consultant and other HIV professionals, and the articles which we carry simply reflect the changing ideas and theories surrounding HIV. Likewise, a decision to start treatment should always be made after seeking the help and advice of as many people as practically possible. There are many professionals who are able to discuss this from the Clinical Nurse Specialists to the hospital Consultants. You may also want to discuss treatment regimes with those people currently taking them to find out about the day-to-day practicalities of a particular regime. If you are currently having problems deciding what to about combination therapy, the best advice we can give is to talk to others about your situation. Ultimately the decision is yours, and the more information you have, the easier it will be to make the right decision for yourself.

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