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Top Stories This Week in the Chronicle.
December 1, 2006

World AIDS Day Special Issue

'Long-term survivor' can now
mean growing old with HIV

We�ve come a long way since 1981. Ever-increasing medical advancements have helped change the face of HIV from a deadly disease to a chronic condition.

As a result, the faces of those who carry the virus have changed as well�literally. There is now an ever-growing population of long term survivors, some who have lived with the virus for over twenty years.

According to the Centers for Disease Control and Prevention there are over 78,000 people age 50 years or older living with the virus in the United States. This compromises between 11 and 15 percent of AIDS cases in the United States according to the National Association of HIV Over Fifty.

The question is: are their needs being recognized and met by our community?

On November 10, the AIDS Taskforce of Cleveland hosted a discussion on this question among long-term survivors, many of them gay men, over 50. The mutual consensus: The community still has a long way to go.

A long term survivor over 50 faces many obstacles every day. Not only are they treating HIV, but they also might be struggling with osteoporosis, arthritis, menopause, high blood pressure, diabetes, and many other health conditions that the aging population confronts. Are these ailments a result of age or the harsh medications that many have been taking for decades?

Although the clients were very happy with their HIV doctors, they did worry that �they don�t know what to do with them any more.� They are outliving all projected life expectancies of the research and medical fields. As one participant said, �They need to come up with a new name for us.�

Another person pointed out that the demand for a geriatric HIV doctor needs to be addressed.

Everyone was in agreement, however, that it is critical to feel comfortable with your doctor and become an active participant in your own health, whether it is following an exercise program, taking your medications correctly, or simply asking questions.

Spirituality helped many of the group members find strength in dealing with their HIV status. Many found that their spirituality helped them find acceptance when they were rejected by their family and friends. Unfortunately, not everyone found open arms when they stepped into a church, and were forced to struggle with an additional rejection.

Several participants also expressed their concerns over the ever-increasing sexual activity in the older adult population (�thanks to the wonders of Viagra�) which is being paired with the continued denial by society of sexual activity existing in this population. These drugs are being prescribed without any information on safe sex practices. Doctors are not talking about these issues with patients and are often times not offering to test older adult patients.

One of the main concerns discussed by the group was that many felt they had outgrown the support groups they had been participating in for years. Not only have they faced rejection by friends and families, but now they are dealing with the societal norm of overlooking and undervaluing older generations. Isolation and loneliness are a common result. The need for new sources of social support is vital for older adults living with HIV and AIDS.

With decreasing media coverage, the continued stigma that hovers around the virus, and the reduction of funding for HIV, our community needs to be resourceful. Our community must be able to prevent new infections as well as provide services for the widely diverse HIV positive population. Taking advantage of the knowledge and hope that is present in many members of the aging long-term survivors population is a necessary step that must be taken in order to achieve these goals.

As one man said, �We�ve been around the block. No, we�ve built the block.�

The question remains, what can our community do to take greater advantage of the priceless knowledge and experience of these aging pioneers?

This conversation is the beginning of a more focused consideration of the growing population of long term survivors over fifty that the AIDS Taskforce of Cleveland is committed to serving. We hope to continue this discussion in the coming months. Your input and ideas are always welcome.

Jaclyn Pilette is a social work intern at the AIDS Taskforce of Greater Cleveland.

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