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The Newsletter of the Toronto Hospital Immunodeficiency Clinic

Vol. 6, No. 1, Summer 1998

Editor's Notes

A majority of the PHA's treated in our clinic are now receiving complex combination antiretroviral therapy.  In the previous issue, I reported on some of the fears and frustrations of those who found that these treatments, about which they had originally held high hopes, were too difficult to take due to symptoms and side effects, not working up to expectations, or failing altogether.  I also commented on the psychological impact on these patients of witnessing many HIV+ friends for whom these drugs were working optimally and the mixed feelings that this can engender, and on the fear of imminent decline in those for whom treatments were working well.  

While the best combinations are currently unknown, we believe that by giving people more information and vehicles to communicate about their questions and fears, we can create a greater sense of personal choice and empower their decision-making about future care.  We also recognize that in a research environment in which rapid changes occur, PHA's deserve to get up-to-date information, as what is anticipated to be available can influence their current decisions about taking or not taking medication.  

You will find articles in this issue about new treatments in development, what to do when your treatment is failing, new research studies that you may be eligible for, pregnancy, the dangers of recreational drugs taken in combination with ARV's, to name a few topics.  The Clinic also continues to hold public forums for free where people can discuss issues such as these in more detail with expert presenters.  Persons interested in getting on the mailing list for these functions can contact the Clinic reception desk at 340-5077.   

The next public forum will report on the upcoming International AIDS Conference in Geneva.  Further, the Clinic is now offering counselling groups led by clinical psychologists where people can explore the many difficult questions that relate to decision making about treatment, including various quality of life issues.  By shared discussion of common themes with others living with HIV, we hope to bolster the positive coping that is usually associated with information and support.  

 For further information, please contact Dr. Doug Saunders at 340-4800, ext. 5160  

More information about Clinic services and HIV disease is available on the Clinic website, which has now been visited by over 26,000 people!  "Surf the Web" to "www.tthhivclinic.com", and e-mail us with your questions and comments.  

More PHA's are asking us questions about complementary therapy, and how it is being used to benefit general health and immune function, and to reduce the side effects of medications.  Look out for our next issue, which will include information about research we are doing on complementary therapies and their use, and a review of the World AIDS Conference in Geneva

If you have any suggestions for topics we can cover in upcoming issues, you may contact me at 340-5077 or e-mail us through our Website.   

Editor: David Coop, MEd., MSW,

Clinic Coordinator 

Coming up in the Next Issue of Positive Times: 

Complementary Therapy:  What are PHA's Using? 

Historically, complementary therapy (CT) use has been reported in 20-40% of people living with HIV/AIDS primarily for their supposed anti-HIV or immune-boosting properties.  However, with the advent of new antiretroviral therapies, patterns of CT use appear to have changed.  In the next issue, we will report the findings of our recent survey on the type and number of CT therapies in our clinic PHA's are using today and the reasons for their use.  Vitamins, minerals, herbal preparations and other categories of CT will be discussed. 

12th World AIDS Conference 

Highlights of the 12th World AIDS Conference held in Geneva from June 28 to July 3, 1998 will be summarized in our next issue.  Abstracts were submitted by researchers from 136 countries in the categories of basic science, clinical science and care, epidemiology, prevention and public health, social and behavioural science.  Four abstracts by Immunodeficiency Clinic staff that were accepted for presentation in Geneva will be among the research discussed.   

 

Featured Articles: 

Focus on Research   Research Studies In Progress at the Clinic  

HIV Advisory Group Vacancies 

The HIV Advisory Group is looking for several patients who would be interested in becoming representatives of this body.  Interested individuals must be receiving services in our Clinic, and be able to commit to attending at least one luncheon meeting a month.  The purpose of the HIV Advisory Group is to develop and maintain effective links and communication between the Clinic and the HIV/AIDS community that it serves, and to advocate on behalf of Patients'/Consumers' rights. 

Interested Individuals should contact David Coop, Clinic Coordinator at 340-5077.

Editor: David Coop, MEd., MSW,  Clinic Coordinator 

Director, Immunodeficiency Clinic 

Contributors: 

David Coop, MEd, MSW, Margaret McGrath-Chong, RN, CNCC(C);Irving Salit MD, FRCP(C), Alice Tseng PharmD; Sharon Walmsley, MD, FRCP(C)

We welcome your comments. Please write to:

    The Toronto Hospital, Immunodeficiency Clinic

    College Wing, Ground Floor, rm. 315 101 College St.

    Toronto, Ontario M5G 2C4

    Phone: (416) 340-5077 Fax: (416) 340-4890

or e-mail us at:

 

Notice to Clinic Patients 

Help expand the knowledge of HIV 

Join the Hood Project

What is HOOD?  

HIV Ontario Observational Database. It is a voluntary research project which collects information, under strict confidentiality, about HIV disease in the Province of Ontario 

Why Participate?  

To help researchers and doctors understand HIV better and to help improve the services provided. The information obtained from the HOOD will help researchers gain a more complete understanding of an individual with HIV.  

What does participation require?  

The completion of a brief questionnaire that contains some personal information questions. Your name will never appear anywhere in the information collected about you.  

Who do you contact for information? 

Virgina Waring, Database Coordinator, Immunodeficiency Clinic (416) 340-4800, ext. 8307 

Advance Announcement 

    Practical Approaches for Health Care

      9th Annual Conference

      December 3 and 4, 1998

      Primrose Hotel, Toronto, Ontario

    a program of:

    The Immunodeficiency Clinic The Toronto Hospital and Continuing Medical Education The Faculty of Medicine, University of Toronto

    For further information, or to get put on the mailing list for the conference agenda, please contact Jan Spencer, C.M.E. at 978-2719 or David Coop, TTH., at 340-5077. 

This program is relevant to all health care professionals and patients.

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