November 28, 2003

GAY PEOPLE'S CHRONICLE 11

AIDS clinical trials will answer your questions

by Bob Bucklew

HIV-positive people have what seems like an endless amount of things to learn and decisions to make. This is especially true in learning and making decisions about medical care. So the people at AIDS Clinical Trials Units go the extra distance in helping

people understand their choices, and strongly support people in making their own decisions about medications. Throughout the entire clinical trials process, they are available to answer any questions that the client might have.

Here are some of the most commonly asked questions about clinical trials:

HIV+ people can go back to work, yet retain benefits

by Sue Doerfer

At one point, a diagnosis of HIV felt like an immediate death sentence. Today, with new drug therapies, people can live much longer, and with a higher quality of life-and with the right support system and services, they can become or

or remain active in the workforce. off system and services, they o

Many people living with HIV were classified as disabled and qualified for monthly benefits for their living expenses. Now, due in part to new medications, some who were previously "disabled" are now able to work. Both Social Security and Medicaid have provisions to enable HIV positive people to return to work while temporarily maintaining some benefits.

Still, returning to work can be stressful, frightening and risky. Issues such as disclosure, taking medications while at work, managing medication side effects at work, reasonable accommodations, and medical insurance can be difficult to tackle-especially if the HIV-positive person has been out of the workforce for any period of time.

The greater Cleveland community has an array of job and career resources that can assist HIV positive people in preparing to go back to work. The process of returning to work may require job training or re-training, career counseling, job search skills and placement assistance. If you are living with HIV and would like to return to work, feel free to contact the case management department at the AIDS Taskforce of Greater Cleveland for assistance at 216621-0766.

Sue Doerfer is director of clinical social services for the AIDS Taskforce of Greater Cleveland.

What is a clinical trial?

A clinical trial is a research study to answer specific questions about new therapies or new ways of using established therapies. Clinical trials are used to find out whether new drugs or treatments are both safe and effective. Most current drug therapies were first developed in past clinical trials.

Why should I consider joining a trial?

There are several reasons that people say they join a clinical trial. Many people who are in clinical trials like the personalized medical attention they receive. Each clinical trial has at least one study nurse assigned to the trial. The study nurse is available to you to answer any questions that you may have.

Many clinical trials provide more frequent monitoring of people's health than is normally done for non-clinical trial patients. While this may require more visits than you are used to, you will have regular up-to-date reports on your health.

Some trials provide people access to new drugs or therapies that are not available to the larger HIV positive community. Many of these drugs are provided at no cost to the trial participants.

Many people say that participating in a clinical trial gives them the sense that they are helping not only themselves, but everyone who is HIV positive.

Do I have to switch doctors?

No. The AIDS Clinical Trials Unit will work closely with your primary doctor. All lab reports from the clinical trial will be sent to your primary doctor. If they find that you need some type of treatment that is outside of the trial, you will be referred back to your primary doctor.

Will I be told everything about a trial before I decide to participate?

Yes. Everyone thinking about entering a trial is provided written information detailing the risks, benefits and procedures involved in the trial. Any questions that you have will be answered by an ACTU staff person.

If the treatment I am getting in a clinical trial isn't working for me, can my therapy be switched?

Yes, in some cases the treatment can be switched while you stay on the trial. In other cases, you may have to stop the clinical trial. In either case, this will be discussed with you and your primary doctor before any changes are made.

Do you have any trials for my situation?

That depends. New trials open each month. They make an effort to have trials for HIV positive people who have different medical needs, such as those who are failing current therapies, studies for persons who have never received antiviral therapies, and studies of complications or side effects from taking medications.

To find out what trials are being offered at University Hospitals of Cleveland, call 216368-AIDS (368-2437), or go to their web site at www.clevelandactu.org. For information on clinical trials at the MetroHealth Medical Center subunit, call 216-778-5489, and at the Cleveland Clinic Foundation subunit, call 216-444-0214.

There are also AIDS clinical trial units, not affiliated with CWRU, in Columbus, 614-293-8112, and Cincinnati, 513-636-7607 or 800-874-2572.

Bob Bucklew is the outreach coordinator for the AIDS Clinical Trials Unit of Case Western Reserve University.

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