Ask Dr. Jeff
Question: I saw that the treatment guidelines have changed to say people should start anti-HIV therapy when they have less than 350 T-cells. I started meds when my T-cells counts were below 350, but now they are 525, should I go off therapy?
Answer: First, it is important to note that the Public Health Service (PHS) HIV Treatment Guidelines are just that, guidelines. They clearly state that treatment should be individualized. To learn about the changes in the PHS HIV Treatment Guidelines see "Treatment News" in this issue.] However, your question is one that is being asked by many people.
The first point to emphasize is that people tend to return to the viral loads and T-cell values that they had before they started therapy, within a couple of months of stopping therapy. This seems to be because there appears to be viral load and T-cell "set points" to which people return without therapy. Because of this, those people who gained the greatest number of T helper cells when they began anti-HIV therapy will generally lose the most when they stop medications. The other concern with stopping therapy is that some people may experience an acute HIV infection-like syndrome because of the rebound in viral load due to the large number of uninfected T helper cells available for the virus to infect.
So, in general, I have some serious reservations about people stopping therapy. Especially if they started when they had T helper cell counts below 350 or viral loads above 30,000 (by bDNA) or 55,000 (by PCR), and are tolerating their treatment well. Again, this is because, on average, people will return to pre-treatment values within 3-6 months of stopping medications. Thus, the period off of medications is likely to be short, and the time to regain the lost T helper cells may likely be longer.
Question: I began an anti-HIV medication regimen three years ago and have done well, maintaining an undetectable viral load and lots of T-cells. Even before I started therapy, however, my T-cell counts were still 450 and my viral load was only 25,000. I saw the change in the recent HIV Treatment Guidelines and I'm wondering if I should have ever started medications. Should I stop treatment now?
Answer: This question is even more difficult than the previous question. First, it must be pointed out again the PHS HIV Treatment Guidelines emphasize the need to individualize therapy, and not just make choices based on numbers. There are many issues to consider when faced with this situation. On one hand, it makes sense to stop HIV from replicating in order to stop the damage to the immune system in all people with HIV infection. If we had drugs that were easier to take, with fewer side effects, the guidelines would probably still advise early therapy. On the other hand, one of the driving forces behind the change in the guidelines was increasing concern about the difficulties of staying on medication regimens for many years, and the long-term side effects that are being observed. Data showing the greatest benefit of anti-HIV therapy is still in people who start with T helper cell counts below 350, and especially in people with T helper cell counts below 200, also contributed to the change in recommendations.
It is important to consider both how effective the treatment is, and how well it is tolerated. Other factors to consider are the existence of other infections, such as chronic hepatitis B and C, whose course may be worsened by long-term immune suppression due to untreated HIV. Also, a large unknown variable is the long-term risk of developing cancer of the lymph glands, or lymphoma. HIV-positive people have significantly increased risks of lymphoma. While the overall incidence of lymphoma has decreased due to potent anti-HIV therapy, many clinics are reporting seeing lymphoma develop in people with T helper cell counts in the range of 200-300. It's possible that starting medications later may mean the improvements in the immune system will not completely reverse that risk. This is just one more variable to factor into the complex issues that people need to grapple with, both when deciding when to start anti-HIV therapy, as well as deciding if, and when, to stop therapy.
There is not a simple answer to your question, except to say that for people who are experiencing significant side effects from their therapy, and who started therapy when they had T-cells well above 350, and relatively low viral loads, stopping medications (but continuing close monitoring) is a valid option to consider. At the other extreme would be people who are experiencing little or no side effects from medications, and have a good boost in immune function from therapy. Continuing therapy might be a reasonable choice in that situation. For the vast majority of people in between these two ends of the spectrum, a thorough discussion of your options with your healthcare provider, even seeking a second opinion, may be the best approach.
NOTE: The PHS HIV Treatment Guidelines are not meant to stop people who want to stay on medications from doing so. Insurers should not use the guidelines to stop paying for drugs. Already it is rumored that one state's AIDS prescription drug plan is considering stopping payment for drugs for people with more than 350 T helper cells. This was not the intent of the recent changes to the guidelines. Fortunately, in Washington State, the AIDS prescription drug plan is not even considering this option, and has never set any restrictions by lab values, or clinical conditions, on when approved drugs may be prescribed.
This article was provided by Seattle Treatment Education Project. It is a part of the publication STEP Perspective.