back to contents

back to homepage

TREATMENTS & RELATED ISSUES

Articles in this section:

Absence Makes the HAART Grow Fonder

BAARFING MAD!!

A.T.P. Dr Fax Symposium II

Bethany




Absence Makes the HAART Grow Fonder

This headline without doubt had to appear eventually somewhere or other. It first showed up on the front page of the February 1999 edition of “GMHC treatment issues” the newsletter of the New York organisation Gay Men’s Health Crisis. It reports the well known case of the Berlin patient of Dr Heiko Jessen The patient with the code name AA, is the first case to be made public of HIV infection “in remission.” It is important to know that the patient started treatment early in the infection process before he was producing antibodies to HIV. He responded well to initial treatment of ddl, hydroxyurea and indinavir. His treatment was interrupted twice. The first time when he was hospitalized for a testicular infection after which measurable viral loads temporarily returned. The second during an episode of Hepatitis A. This time there was no rebound nor was there when the patient went off treatment permanently after 6 months.
Two years later his cell counts have become normal. What is remarkable is the continued presence of CD4 cells that respond to HIV p24 core protein. Such cells usually disappear during HIV primary infection.
Dr Jessen’s patient joins a few other known cases in which HIV spontaneously disappeared from the person’s body. For example at the 6th Retrovirus Conference a University of Washington group of 37 men who tested negative for HIV antibodies had a history high risk sex and had CTLs responsive to HIV. (CTLs are CD8 cytotoxic lymphocytes which are able to attack and kill HIV infected cells) When these men’s resting CD4 cells were checked for HIV infection, viral genes were found in one to two cells per 10 million. Attempts to stimulate the virus met with little success indicating that the remaining HIV was defective and permanently quiescent
Interestingly the HIV genes from these men differed from those of the men’s main sexual partner. It would seem that thy had acquired an aborted infection through contact with someone else and were now somehow protected from repeated exposure to a different HIV strain.
Most experiences with treatment interruptions have been negative, with HIV immediately rebounding, sometimes to levels higher than pretreatment. However, Dr Franco Lori is conducting experiments with monkeys and humans that copy patient AA’s situation more exactly with good results. The three essential elements are early treatment, regular therapy interruptions and hydroxyurea.
According to Dr Lori the trick is to teach the immune system to fight HIV using hydroxyurea as the fourth drug. The Future of Remission Viruses that are held in check by the immune system have the nasty habit of coming back when the immune system is weakened by age, malnutrition, acquired immune deficiency or any other kinds of stress. The future of remission is uncertain, but putting HIV infection in a resting state does not mean that it can be forgotten.

The above information was extracted from the lead article written by Dave Gilden in Vol 13 No 2 February 99 of “GMHC treatment issues” There is a copy at the Hanley Centre resource room. These newsletters from New York, USA, appear at irregular intervals but are worth waiting for as GMHC is one of the organisations at the forefront of information about experimental AIDS therapies.


top of page




BAARFING MAD!!

Question: What is the difference between true love and HIV?

Answer: HIV is forever.... and so is HAART.

HAART I hear (some of) you ask? What the hell is that? H.A.A.R.T. is the name used to describe the current HIV drug treatments and stands for Highly Active Anti-Retroviral Therapy. As someone who has taken these drugs on a daily basis for the last 4 years, I think they got the name wrong...perhaps B.A.A.R.F. would be more appropriate...(not to mention more descriptive of the side effects)... Bloody Awful Anti-Retrovirals... FOREVER !!

The important part of the term HAART is Highly Active, which is a nice (medical) way of saying “prepare to spend the rest of your life a slave to these drugs ...and feeling like shit for most of it... oh, and ... by the way...the side-effects may never go away..and may get worse...”

Taking HAART is not like taking antibiotics. HAART is a combination of (very toxic) drugs, usually 3 or 4 different kinds which have to be taken at very specific times of the day. Some once a day, some twice a day and some three times a day....every day... including Christmas Day, your Birthday, New Years Eve, and of course, when you´re on holiday. Not only that, but some of them have to be taken with food, and some of them must be taken without it. And let’s not forget that as well as these drugs, you may have to take other drugs as well (to prevent you from getting other diseases which could attack your damaged immune system). At one point I was taking 29 tablets a day.!!

Eating normal meals at normal meal times is out of the question.Not only is it impossible to fit in with the drugs, but eating anything with that lot inside you is almost impossible!

Best of all? You can’t skip a dose because it doesn’t fit in with your plans (e.g. going for a meal with friends). Skipping doses means that you build a resistance to the drugs...they stop working...so you’ve just wasted God-know’s how many months (or years)-in-hell taking them in the first place!

Why am I writing this article? Because I recently heard someone saying “ why are they still making such a fuss about HIV...we´ve got the new drugs now..”

...Jesus!...I hope he never has to take them.

Bob Lishman.

top of page


ATP Dr Fax Symposium II

New HIV Treatments - Implications for Clinical Practice.
25th Feb 1999 Royal College of Physicians, London.

The Symposium was a multinational gathering made up of a wide assortment of delegates including researchers; HIV specialists; infectious diseases, Virology and Immunology clinicians; representatives from most of the major national AIDS organisations; activists and informed positive people. The other important element of the Symposium was the band of representatives from the HIV drug manufacturers. Envoys from most of the principal HIV drug companies made up a significant proportion of the gathering.
Aims of the Day
When the aims of the day were outlined the assembly was assured that this was a patient group forum organised by a patient group (ATP) and not a drug company forum. In fact there were just two presentations by the drug companies, one in the morning and the second in the afternoon.

1st Drug Presentation

Adefovir Dipivoxil and DMPA from Gilead Drug Company;

T20 a “Fusion Blocker” from Timeris

Tipranavir (Phamacia & Upjohn) a second generation protease inhibitor. (As these work in a different way than all other PI’s they are likely to be effective against current PI resistance)

DP961 and DPC963 (Du Pont)

2nd Set of Drug Presentations

New therapies by the drugs companies featured 2nd generation drugs:

F-dda (US BioScience)

Enteric coated ddl and BMS 232632 (Bristol Myers-Squibb)

ABT-378 (Abbott) - This presentation involved an impressive cross Atlantic hook up with a spokesman from the USA.

Abacavir and Amprenavir (Glaxco Wellcome)

The following topics were covered during the day:
Managing Side Effects presented from the points of view of clinicians (Stefan Mauss from Germany) and as seen by a Clinical Phamacist (Heather Leake of the Royal Sussex Hospital Brighton)
The use of databases A very interesting insight into French system of recording and sharing patient information.(Dominique Costaglio from INSERM SC4, Paris, France)
Treatment Decision Making Mike Youle of the Royal Free Hospital London flagged up many extremely valid points including: patient power; pharmacy lead clinics; Interactive databases; sharing and duplicating best practices.

In summary the most significant points of the day were:

The New Drug presentations

Comments made by Mike Youle with regard to patient participation

Pharmacy lead treatment

Patient information databases

Subjects of importance which were raised but merited further development:

National Guidelines

Monitoring of HAART.

Not to lose sight of the purpose of drug developments - the well being of positive people, not simply good clinical results.

This (edited) feedback report was undertaken for BP Staffordshire by one of its members. BP Staffs members will receive a full copy together with an account of the 1st Anniversary meeting shortly. Anyone else interested in reading the full report should ask Neil Pepper to see the resource room copy. If you would like a copy sent to you and you are not a member of BP Staffs please write to the Newsletter (address on back page), enclosing a large stamped (26p) self-addressed envelope, or you can download it from here by clicking on the icon below

DOWNLOAD atp.zip



top of page




BETHANY

One of our southern-most readers has recently spent a week at the Bethany Respite Centre in Cornwall. He said that he had enjoyed a marvellous time there, and that it had provided an enriching and rewarding experience as well . He would highly recommend a stay at Bethany to anyone living with HIV.

Bethany offers respite care in the heart of Cornwall. Their attractive brochure gives you all the information you might want to know about the place, the accommodation and activities it provides and how to get there. (There is a copy of their advertising leaflet in our Resource Room)



top of page

back to contents

back to homepage