By Vic Hernandez, DR.P.H.
There are many theories on the extent of the role of HIV in AIDS. Some believe that HIV is the sole cause; some believe that HIV is a catalyst for an auto immune disorder; and some believe that HIV holds no prominence in AIDS.
Let us say that HIV is the sole culprit in AIDS development: then the central task for the containment of HIV involves shutting down the replication of the virus within infected cells. This was the idea behind the development of AZT and other antiretrovirals for use against HIV/AIDS.
AZT, like most nucleoside analogs, is inherently immune suppressive; causing bone marrow suppression, neuropathy, as well as cell dysfunction which affects other organ systems; and muscle tissue deterioration (buttocks and quadriceps) rarely reported but commonly seen. AZT and other nucleoside analogs adversely affect the kidneys (elevated serum creatine), liver (lactic acidosis or "fatty liver") pancreas, and other organ systems. Since it is so widely used, AZT's particular toxicity for the immune system is crucial.
Nucleoside Analogs are the class of medications approved to slow down the progression of HIV, they include: AZT, ddI, ddC, D4T, and the newly approved 3Tc. (Also called antiretrovirals.)
One of the reasons why the early AZT studies were so flawed is because many of the persons on drug were experiencing severe side effects and the health care teams were not listening to patient's complaints. As a result, many people self-dosed or took smaller amounts of drug so as to curtail side effects, not the dose that was being administered in the study. When the data was analyzed, this covert modification of dose was not taken into account. Yet this data is used to support the use of AZT.
Study data can be modified in enough different ways to prove whatever the investigator wants to prove. Researchers naturally want to extract the positive aspects of their projects.
When this process goes beyond reasonable interpretation of the facts, it becomes, "data torturing". It is impossible to tell how widespread data torturing is. Like other forms of torture, it leaves no incriminating marks and is difficult to prove when done skillfully. There are clues that should stir suspicion and questions that must be raised.
Science has a duty to inform and educate the public, in no uncertain terms. As consumers armed with information and perspective, we must speak with researchers and health care professionals. Science must neither frighten people unnecessarily nor give them unjustified expectations.
HIV/AIDS research should have immediate priority with speedy and reliable progress. AIDS research is impeded by many scientific unknowns, but especially lacking is strong leadership, the idea generation development, cooperation among all parties involved and a financial commitment to meet the challenge of the present AIDS pandemic we are all living with. We have wasted too much precious time on the single focus of AZT.
As my friend, Pat, says: "It's so weird because ... AZT doesn't work, I mean, it just doesn't ... and it's so weird because everyone pretends that it does ... the researchers, the doctors, the community, everyone."
From 1993 Interview With
Dr. Alexandra Levine
I think it's really important to understand that we need to not only improve the length of survival, but the quality of survival. I firmly believe that AZT improves the quality of life in a real and meaningful way. To me, it's a damn good drug. I am not, in any sense, saying that someone is going to be on AZT for the whole rest of their life. The germ, HIV, is going to learn to be resistant to AZT because it's going to learn to mutate. I never thought AZT was the answer. It isn't the only answer, but it sure buys a heck of a nice piece of time.
If you're going to consider taking AZT, be aware of the benefits and risks. Does taking it cause you problems or not? What are the side effects and what are the benefits? What were you able to do before AZT? What are you able to do after AZT? Look at the balance between the advantage, and possible disadvantages.
Scientifically, I don't know the answer but, my bet is that treating earlier is better. Ultimately, I may not be right, I may not be proven right for years. On the other hand, deep in my soul, I feel there is no question that you must start treatment early.
The current problem is that the drugs available are relatively few in number. In addition, each drug will eventually be associated with the development of resistance. The virus, HIV, will learn to live with it. The problem becomes using the limited drugs that we have wisely and in time.
I don't automatically start AZT or any other drug at the moment that I have a newly diagnosed or a newly infected patient. It makes sense, but there are 2 issues; one is practical, and the other is scientific. The real answer, scientifically, is that when we have the drugs to be able to span a life time, we most definitely will start treating HIV the day we know the person is infected. It's the only thing that makes sense.
Practical, meaning treating over a long period of time, is another issue and it depends on how long it takes to get resistance and how many different drugs we have to add into the equation.
As my friend, James Foster, used to say: "The bottom line is, these are the medications we have to fight HIV, you either take them or you don't."
More Thoughts From Vic
There are other therapies that enhance the immune system, stabilization, and quality of life of PWA/HIVs such as the Protease Inhibitors, Integrace inhibitors, LTR inhibitors such as Thalidomide & Pentoxyphyl-line (combined with TAT), CD-8/CD-4 Expansion (with IL-2 enhancements), Passive Immuno-Therapy (Plasma exchange). Therapies based on a variety of different theories are emerging and showing significance: immune modulators, combination therapies, anti-inflammatorys, antioxidant therapies (NAC, Beta Carotene, Vitamin E, and many others), gene therapies, fusion molecule research, naturopathic approach (homeopathy, acupuncture, as well as the use of whole plant extracts as antiviral therapy or immune modulators), opiate receptor/antagonists, as well as attention to life-style issues such as diet, exercise, spirituality and psychosocial issues.
It can seem overwhelming to identify how your body is responding to HIV, what profile you fit and what treatment approach to choose. Sticking with a treatment approach and keeping vigilance over the efficacy and or failure of your treatments is a full time job!
It's always best to seek the support of a treatment group. If there isn't one established in your area then start one up among friends who feel they can work together to sort through data and other information. Getting the information to decide what therapies are best suited for you and the markers (such as T-cell counts, viral load, etc.) to monitor your own efficacy or failure on drug is a tremendous process. A process that relies on the work of many scientists, health care professionals, and support networks of PWAs/PWHIVs.
For a complete copy of Vic's entire paper including references, please call the Women Alive office at 1-800-554-4876. Or call PWACNY Newsline at 212-647-1415.