Thursday, November 30, 2006

Reflections on World AIDS Day, 2006

Tomorrow is World AIDS Day. In roughly two weeks, I will reach the 21st anniversary of the awareness of my status as an HIV+ person. December is usually a rather dismal and depressing time for me, but this year, I am finding more hope and happiness in the late autumn sun. I am content with my place in this world and feel that I contribute in a small way toward making the world a better place for people living with HIV/AIDS. I can not ask for much more than the ability to help, especially since I have lived on borrowed time since 1985.

Last year at this time, I was preparing for the holidays with my family. Two days before I was to leave for my Mom’s house for Christmas, I received a call to tell me that she had been hospitalized with a heart condition. Over the next four months, it became very apparent to me that I hold many more things in common with my 81-year old mom than I do with most people in my own age group. I watched with intellectual curiosity and emotional fear as my mom was treated to a battery of tests and experienced some pretty blatant medical incompetence. Two months into her care, my mom’s cardiologist had basically written her off as moribund and her pulmonologist actually had the gall to tell us that we were wasting his time for keeping an appointment with him made by a doctor in the Emergency Room. We were lucky. The incompetence and callousness of these two physicians were enough to drive us to make some changes in her team. We were able to switch doctors and a new team evaluated my mom’s situation and corrected her diagnosis. Within a week, she was able to walk again without the use of oxygen. She is doing well now, but had we not made the decision to find doctors with more concern for my mom’s health, we would likely not have her with us now.

It was stressful for me to spend four months away from home caring for my mom. In the process, I became quite run down and fell victim to a series of infections that have been more of an annoyance than a threat to my health. I did land in the Emergency Room again this year with a spike in my white cell count and a case of strep that had been misdiagnosed due to a false-negative quick-strep test. Still, I have been lucky. Most of my issues have been easily treated by adding antibiotics to my usual daily dose of about 25 other pills. It is never pleasant to live through ten days of a course of antibiotics, but after the fourth course of them so far this year, I am downright irritated—quite literally so, in fact. After so many antibiotics, my body has begun to experience problems with difficult-to-treat fungal infections. These issues are nothing like the PCP, the CMV, the toxoplasmosis, the shingles, the MAC, etc., etc., that my friends of the early days of AIDS had to try to survive.

My normal World AIDS Day activity has always involved remembering my lost friends. There is not a day that goes by that I don’t think of someone who is no longer here among the living. I still honor their memory by laughing about the stories we lived out together and by thinking very fondly of them to this day. When I consider that they have been gone, some for as many as 20 years, I am so very amazed still to be alive myself.

This World AIDS Day, I would like to focus a bit differently. In the past 6 months, the International Carnival of Pozitivities, a blog carnival that I founded for people living with HIV/AIDS around the world has done much to educate me about HIV/AIDS elsewhere…that is to say, outside of my own world. There are a number of themes that we share no matter what our culture and it is worthwhile simply to state what I am learning.

  • It is imperative to find a doctor who treats you with respect, compassion and competence. I am lucky to have a great doctor, but if you find yourself questioning your relationship with your doctor, it may be worthwhile to shop around if you can.

  • We are learning more and more about the side effects of the much touted anti-retroviral therapies that have been credited with reduced mortality among AIDS patients in the western world. Many of these side effects are debilitating, if not ultimately fatal themselves. With the tremendous cost of our medications and the growing list of severe side-effects, long-term maintenance therapy is not a solution. It is only a stop-gap until there is a cure. Nonetheless, it is all we have standing between us and death.

  • Any disease for which you have a genetic predisposition will likely develop earlier in your life than it would if you are not HIV positive. Examples include diabetes, heart disease, arthritis and alzheimers.

  • For the sake of greater humanity, it is imperative that we find a vaccine for HIV and its various strains. Although it will likely not help anyone who has already been infected, a vaccine could prevent the spread of the disease to anyone else. In a world that is driven by a free-market pharmaceutical industry, there is little incentive for vaccine development because of the significant profits from maintenance drugs. It is critical that our governments step up either to provide the necessary incentives or to develop vaccines on their own. I would challenge any form of government on this earth to find a vaccine. Instead of war and threats of war, let us see what you can do to improve the health of millions. Find a solution for this problem and you will not need to spin your worthiness to the world.

  • It is important to know your status for sure. Just because you tested negative for HIV antibodies a year ago does not mean you are certainly negative today. Get tested and repeat the test at least yearly.

  • Stigma about HIV/AIDS may well be the most insidious of problems that many of us face around the world. If we are unable to seek help because we fear the reactions that others will have on learning of our status, then we are doomed to die. We must do more to counter stigma through frank and honest education about sexuality and health.

  • We must promote condom use among sero-discordant relationships. When one partner is HIV positive and the other not, the use of a condom can save the HIV negative partner’s life. This is true for both long-term relationships and casual encounters. It is time to leave the moralizing behind and focus on saving lives.

  • Western views of HIV/AIDS in Africa and Asia can not be complete without looking at the role of poverty and malnutrition as well. Lack of infrastructure to provide clean water, food and medications in a consistent manner will lead to treatment failures as surely as not having the drugs.

  • In societies where the role of the government is weakened by famine and drought, the Church often represents the most efficient network for access to treatment. We have to ensure in this case that all people, regardless of religious beliefs, are treated equally and fairly.

  • We need to educate about all aspects of this illness for all people in the world. It seems that knowledge is the key to debunking myths, demystifying the disease and providing dignity to those of us living with HIV/AIDS. In some ways, it is up to each of us to become our own advocate.

  • Increased volunteerism is needed to fight this disease. It is not about what you can gain financially from helping out. We need to reward those in our societies who help without being asked, who give when their own needs are great and who teach when others would have the teachers silenced. You don’t have to be a "Mother Teresa" to help many people, you just have to use your brain creatively.

I hope that on this World AIDS Day you will take a few minutes to contemplate the lives of those less fortunate than you and try to find a way that you can help anyone anywhere in the world fight this illness. We are now 25 years into the epidemic and we have so much more work ahead of us. Please do your part.

Safe Journeys.



Blogger Sideon said...

Greetings, from windy and cold California. I thought I'd stop by and say "hello" and send a big cyber HUG HUG HUG. Life has been very busy, but I try and stop by and see what's going on with you.

This post is wonderful and has a lot of excellent information. Scott and I were both watching the news yesterday, and time and again the commentators left off saying that "so much more needs to be done." A gentleman from the SF AIDS Foundation was being interviewed and he was saying that the message about HIV and AIDS needs to change, that complacency and repetition are real issues that must be addressed.

Hugs and love.


12/02/2006 12:22:00 PM  
Anonymous roro said...

Thanks for this, Ron - such a wonderful, eloquent and informative post. Lots to think about and act on. Am sending lots of love your way!

12/03/2006 12:28:00 AM  
Blogger enigma4ever said...

Many Hugs ((((( ))))) .
Your Blog is eloquent and so thorough.I really appreciated your story and the challenges you even faced while caring for your mother....and I am so sorry for some of the incompetence that you encountered. All of the suggestions you brought up about improving care are so relevant. I am adding you to my well as the Carnival site. Keep up you fine work and writing.

12/04/2006 12:21:00 AM  

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