New Anti-Viral Confusion
: There are now thirteen FDA approved anti-HIV drugs and two more available through expanded access programs. In 1991, there were only two -- AZT (Retrovir)
and ddI (Videx)
. The reported information from the trials on new drugs and the new drug combinations is, frankly, confusing. Many people have worked very hard to interpret this new information. Today the consensus is that if you're going to take anti-virals, you should take at least three of them in combination
Monotherapy (taking only one anti-HIV drug) is not only no longer recommended, but is dangerous in the long run and severely limits your future options.
Thirteen drugs means lots of possible combinations. The drug companies have only studied a handful of them, most for only short periods of time. So, very little is known about most of these combinations, especially over the long run. In the real world, some of these drugs are being combined in ways which have never been studied. There isn't a complete map of all the possible combinations being used today.
Things to Consider When Choosing New Anti-Viral Therapy
- If something helps thousands of people, it might help thousands more, including you. Trials with lots of people taking something, for a long time, give more complete info.
- Look for studies that include people with similar numbers to yours. It's hard to apply study results to your situation if the start-up statistics are different (T-cell & viral load counts, etc.).
- Data reflects the average response. Data are reported as if all participants have the same response. Worse, in HIV, final data often include only the "responders." If someone drops out, they're not usually included in the final "results."
- We do not know if zapping your viral load to undetectable will bring you any added benefit. Studies suggest that lowering your viral load a half log (e.g., 100,000 to 30,000) decreases the chance you will get sick in the future. Dropping your viral load by a whole log (100,000 to 1,000) certainly may lessen disease progression.
- Clinical trials usually happen for financial reasons, not health reasons. Example: saquinavir (Invirase) and ddC (Hivid) are both owned by Hoffman LaRoche. So the company ran a trial comparing these two weak drugs, to help boost two dwindling markets (money makes the world go 'round). Similarly, most of Glaxo Wellcome's trials compare AZT (Retrovir), 3TC (Epivir), abacavir (Ziagen) and amprenavir (Agenerase) in various combinations because the company owns all four drugs. However, a combination of drugs made by the same company just might be a good combo for you anyway.
- Most of the combination trials are for short periods of time. There is very little information about taking most of these combinations over longer periods. That information is growing as time goes on.
- Be careful. A combination of drugs that have not been studied together may work for you. But without a trial, there is little safety data, little information about how the drug can affect your liver, pancreas or kidneys, and little information about HIV resistance.
- Keep as many options open as you can for fighting HIV resistance. There are other anti-HIV drugs in the pipeline, and the expanded access drugs will probably be available more widely soon.
- Work with your doctor. If you decide to change your drug regimen, change at least two of the drugs you're presently taking. If you change only one, it's the same as doing monotherapy. Monotherapy has been found not to work well -- and it can actually be dangerous over time!
Do I Need to Take Anything at All?
Information Overload? So your doctor says: "The sooner you take something, the longer you're going to live." Your doctor might be right. And your doctor might not be. The important thing to remember when you hear this is that this is your decision, not your doctor's. Many HIV doctors are very enthusiastic about protease inhibitors and other drug combinations, and often have their own formulas for starting therapy. Their favorite combination of drugs might not be the best for you. Learning about your options will empower you to work with your doctor and shape treatment options specifically for you as an individual.
Staying healthy with HIV is hard work. Use all your resources -- you're not alone. Nurses are fabulous; pharmacists know tons about drug interactions, call us or other treatment organizations, join a support group and find someone who is helpful. And remember, some friends and/or family want to help as well. It's really complicated figuring out what to do. Having a lot of people you can be honest with will help you be honest with yourself.
Suggestions for Working with Your Doctor
Try to figure out what theory your doctor is using to make suggestions. Does your doctor believe that lowering your viral load a half log is the goal? Or are you going for undetectable? Does he or she have some particular theory about HIV resistance?
If your doctor offers you a combo, some things you might ask:
- Why now?
- What's my viral load? What do you think it should be?
- What's my T-cell count? My T-cell percentage? My T8 count?
- My antibody count?
- Can I have a copy of my blood work?
- How soon will I know if this combination is working?
- Who can I talk to who's on this combination?
- What kind of side effects can I expect?
- What about eating?
- Are there other drugs I can't take if I choose this combination?
- What about this combination and my: diabetes, low blood pressure, asthma, birth control pills, allergies, anti-depressants, epilepsy, wish to get pregnant, and (___________ you fill it in)?
- Why are you offering this particular combination? Is it...
- because of anti-HIV drugs I've taken in the past?
- because of side effects I've had in the past?
- because other drugs have worse side effects?
- because you've given it to other patients?
- because of how these drugs work against HIV? What's the data?
- because of how these drugs work together? What's the data?
If you've been HIV-positive for a while, your T-cells are stable, your viral load is low/moderate/high, and you have no symptoms -- you don't have to decide anything today. Research your options. There are lots of them.
Don't forget: it's all one big experiment. Take your time. Be careful, vigilant and above all, gentle with yourself -- no one has all the answers yet!