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Melancholy Christmases Past Chained to the Horror of AIDS

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Pearl Jemison-Smith is a founding member of the Orange County AIDS Services Foundation and has devoted much of her time on behalf of victims

With the holiday season upon us, I can’t help but think about Christmas past, present and future, just as Charles Dickens did when he wrote his wonderful story about old Scrooge. I was a nurse in an infectious disease ward here in Orange County in the early 1980s when a mysterious disease began to claim the lives of young men. I can remember so many of those early Christmases that were spoiled.

Science and medicine were unable to combat it, let alone give it a name, until around Christmas in 1984, when the world became aware of acquired immune deficiency syndrome, AIDS, and its cause, the human immunodeficiency virus, HIV. HIV already had been spreading silently to major cities for perhaps as long as a decade. We had no idea of the death and sadness we would be facing for many Christmases to come.

Brave young men and women faced this disease with little more than hope, determination, and the outpouring of love from precious few people. These were such sad Christmases for many of us who were caregivers or had loved ones who were HIV infected. We watched and celebrated Christmas present because we knew that there would be few future Christmases for most people with AIDS in the early 1980s.

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Christmas past. About the middle of the 1980s, the nation was plunged back into shock and awareness as we mourned the deaths of recognized figures such as Rock Hudson, Liberace and Amanda Blake (well-known as Miss Kitty from Gunsmoke).

Surgeon General C. Everett Koop prompted a national discussion about AIDS, despite resistance from almost everywhere, and finally began the necessary dialogue about modes of transmission, methods of prevention and the need for compassion and caring in the face of a horrifying illness.

A teenager from Indiana, already suffering from the difficult disease of hemophilia, catapulted the nation further into awareness as he and his family publicly faced the ravages of AIDS along with the heartless ridicule and discrimination that he, and so many others, faced. Bravely, Ryan White began the awesome process of transforming this nation’s fear and hysteria about AIDS into understanding and tolerance for those afflicted by it.

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Even the cold heart of Ebenezer Scrooge would have been touched at hearing this soft-spoken giant of a young man educate an entire nation. Christmas, for the nation and the world, would never be the same.

Christmas present. Some AIDS patients now are given a chance at celebrating a few more Christmases, thanks mainly to new drug therapies.

Although the drugs are difficult to take and are accompanied by nearly disabling side effects, many people have renewed their commitment to their lives and futures by taking the first steps at returning to training centers, schools and careers that were interrupted by their disease.

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Many have set about the task of making plans for an ambitious, productive future. Sadly enough, these advances are arriving too late for too many whose disease has advanced beyond any point of recovery. There are many people living with HIV/AIDS for whom 1998 will be their last Christmas, and I am profoundly sad for their plight. Although I celebrate the joy of Christmas present, the painful memories of Christmas past keep me from being truly joyful at our progress.

Christmas future. Just like Scrooge, we stand at a crossroads. We can use the mistakes of our past to guide us to a better future, or we can withdraw into the denial and intolerance of Christmas past. With more than 40,000 new HIV infections a year in the United States, we are a nation that can and must do more. The global toll of AIDS is staggering, and we face the very real danger that an entire generation, perhaps as many as 21 million people in the sub-Saharan region of Africa, may be lost.

Here’s what we must do for Christmas future.

We must adopt and pursue effective HIV prevention methods for those at risk. We must face the reality of HIV transmission among needle-sharing partners and support a clean-needle exchange program.

We must continue to work for a health-care system that can provide a continuum of care for those living with AIDS as well as HIV.

And finally, we must develop a vaccine against HIV so that all nations can be spared the devastation and carnage that I have seen in Christmas past.

Only with these steps can we reflect on Christmas future and take comfort in the words of Tiny Tim: “God bless us, everyone!”

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