When Gerry asked me to ponder this issue, I thought to myself -- just how many chapters in this book am I allowed to write? A novel that would make War and Peace
seem like a short story? Let's see how far I can get in a few paragraphs.
Protease inhibitors are certainly a mixed bag of blessings. They came at a time when hope was very dim; people were losing the fight literally left and right. Suddenly this wonder drug appears. People begin feeling better, going back to work -- Have we found the "cure"? So what if there are a lot of side effects: diarrhea, nausea, aches and pains, and the schedule. That's the price we have to pay to get the wonderful benefits of reduced viral load.
Then reality sets in. These wonder drugs aren't the answer. They are a very useful and wonderful piece to the puzzle. Resistance, metabolic changes, missed doses -- guilt -- side effects and the schedule. Also, some people just don't get the benefits from these drugs! Where do we draw the line?
First, protease inhibitors require a 100% iron clad commitment. When you decide to take advantage of this type drug, you must be serious. Those pills need to be taken every time and on schedule. Almost sounds mechanical, doesn't it? You must accept the side effects and keep close tabs on your blood work to catch any metabolic changes before they become serious. Some people who went back to work now are back on disability simply because they cannot manage the side effects and the schedule and find time to work in between. I advocate knowledge before such a commitment!
We are so lucky to have the Treatment Resource Center here in Atlanta at AIDS Treatment Project and Dan Dunable who runs it.
Research! Know what you are getting into. Do this before you take the first pill! Can you make it work? Can you live with the possible side effects? Look the information up, use the TRC, the Web, ask around, talk to a peer counselor and get all the information you can before you take the plunge! Then keep on asking questions as you take the drugs.
There is one other reality that I would like to touch on, one that has become quite clear as of late. The drug industry turned all of its attention developing "designer PIs." This gives them each a slice of the protease money train. Much research that was underway at the time of the advent of protease inhibitors was shelved. Estimates are that we are possibly two to three years behind where we could have been in research and development. Many of the drug companies now have their own designer PIs. Hopefully, this will allow them time to research new drugs, possibly adding more pieces to the puzzle, and giving us more options.
One quick positive note: the drug companies are starting to take quality of life issues into consideration by making the new drugs easier to take. They are making them with more comfortable pill sizes and coatings; better scheduling with once or twice a day as opposed to three, or even four, time a day. Also, better management of side effects are making their way slowly to us the consumer.
One more thing I advocate: don't settle for anything less than the best possible quality of life!
By "H. H. Peer"
Although you may be reading this in February, it is significant that I let you know I am writing this in November on Thanksgiving Day. I am thankful my viral load remains undetectable. I am thankful for my medications, herbs and vitamins. I am thankful for the financial assistance to obtain the more costly meds. I am thankful for each and every one of my knowledgeable doctors. I am thankful. A thankful heart is intrinsic to my own quality of life.
"Viral load versus quality of life." The word "versus" implies one must choose between the two. However, I believe it is possible, and certainly most beneficial, to synergize the two.
Quality of life (QOL) is predominately born of a state of mind. Everyone creates their own individualized QOL. QOL is a skill. It can be learned. The more you practice at it, the more proficient you become -- and the greater level you attain.
In addition to a thankful heart, some of the components of my QOL are:
- Good nutrition.
- Exercise and rest.
- Competent, trustworthy medical care.
- Friendship, love and support.
- A nurturing home.
If someone truly has QOL, a sense of quality will be with them regardless of their viral load. Likewise, a good QOL synergizes one's efforts to reduce their viral load. A fitting analogy may be the philosophy of money and happiness. Is it possible to have one without the other? You betcha! Is it possible to have QOL with an elevated viral load? Yes. Is it possible to have greater happiness with greater wealth? Allow me to show you where to shop!
QOL is wealth and happiness.