December 1st is always a very poignant day for me. It is a day when I look back at the years I have spent on the battlefront of the HIV/AIDS epidemic and remember all of the men and women fighting this illness who came into my life and changed it for the better.
When I first embarked in this field, we had no arsenal for which to fight HIV infection. Those newly-diagnosed (most often with AIDS) were told to write a living will and given a time line on how much longer they had to live. We dealt with serious life-threatening infections that ravaged the body, and we also dealt with ignorance not only from the community but from medical professionals and family members. I can’t tell you the number of times a physician would refuse to treat a person with HIV infection because they had a perceived notion they might somehow be at risk. It was truly heartbreaking when someone would tell us how his family had cast him out not because of his disease, but because of how he had contracted it. The enormity of issues facing those infected with HIV was overwhelming (and still is).
Eventually, we had a medication that held much promise in treating HIV infection. It was called AZT, and we participated in some of the very first clinical trials. Unfortunately, at the dose given, the drug was more toxic than helpful and most people in the study were discontinued because it damaged their muscles. But something was better than nothing, or so we thought. At this point we still had no diagnostic tests to tell us whether or not the drug actually halted HIV from growing in the body. All we could do was monitor the person’s CD4 count (a white blood cell the virus targets) to see if it increased. During this time we also conducted a vaccine trial that failed miserably.
Over the years, I have seen the advancement of drugs used to fight HIV infection grow from just AZT to a great number of drugs in several different classes. Each class of drugs works to halt replication of the virus at different sites; that’s why it is recommended that someone with HIV infection take a “cocktail” of drugs. These drugs aren’t perfect and they don’t always work for everyone but they’re all we have. We also depend on the individual to take them as directed because missed doses will cause resistance. I am still hoping and praying that some day we will find a drug that actually targets and kills the HIV virus. Right now, we are developing integrase inhibitors that will be available soon. The clinical trial data looks very promising.
Because of the medical advancements made and overall awareness about HIV infection, we have seen the disease move from one of a terminal illness to a chronic illness. That said, longevity has given us a host of other issues. The drugs aren’t benign and sometimes they quit working as well as they did at first. We still have patients we lose to highly resistant virus. I would like to say we’ve seen as big of a change concerning societal issues that we’ve seen in the clinical realm, but I can’t. We have seen improvement but there is still such a long way to go.
My experience, of course, has been within the United States where overall, medication and medical care are available for those infected with HIV. We need to recognize and understand that people in countries without these means are still suffering and dying without any hope of treatment and care. In Africa, eating is often the number one priority. I am saddened that the rest of the world hasn’t done enough to help and still hasn’t grasped the need to proactively work to stop the spread of HIV infection.
Today, I am mostly remembering the people who have touched my life - those who I’ve laughed with and shared warm conversations even in the face of grave adversity. They are the bravest and kindest souls I have ever known and I’d like to thank them for giving me a precious gift – enabling me to understanding that all human beings deserve respect and must be treated with dignity. That a smile and a touch can mean more than anything. If nothing else on this day, World AIDS Day, I want everyone to remember that.
John, Enrique, Ronnie, Al – you are gone now, but you will always hold a special place in my heart. I love you all.
Uninvited Guest
You are there at my awakening,
Every morning as I arise to meet a new day.
Every smile I make or tear I shed
Is shadowed by your presence,
And though no one can tell you're there,
You are ever so present to me.
Your grip is tight
So I feel you constantly.
You will not leave
So I must live with you,
And pray that you will be
More gentle with me
Than you have been with others.
I do not want you
But appreciate you,
For you have taught me to love
That which I have not loved before.
Life.
by Marcus Langston (12-21-59 to 07-24-93)