January 21, 2014
In a recent blog entry on TheBody.com, ScotCharles suggests that treating HIV to undetectable levels may be unnecessary. I disagree.
I have been an HIV medical provider, caregiver and researcher for over 20 years. I've watched far too many of the people I care about die from AIDS complications or suffer from the side effects (sometimes fatal) of our well-intended, first-generation treatments. Yet, today's HIV medications can be very well tolerated. They can prevent disease. They can restore health. They can prevent new infections among children and adults.
Yes, there is a dearth of long-term, longitudinal studies of people living with HIV. However, there are at least some important, ongoing long-term studies, including the study that many of my patients and I participate in: the U.S. Centers for Disease Control and Prevention's HIV Outpatient Study (HOPS), a study initiated in 1993. HOPS was the first in the world to report the decline in AIDS-related deaths in 1998 and continues to report on the health of thousands of people living with HIV across the U.S.
Other studies of this kind are ongoing across the world. These studies inform us about what works and what doesn't. What they tell us is that HIV treatment and virus suppression work.
Side effects from HIV medications are, thankfully, no longer common. In fact, rather than experiencing an increased likelihood of side effects the longer one takes meds, the opposite is true for nearly all situations. And not only is the likelihood of side effects lower over time, but so is the likelihood of treatment failure and drug resistance. This outdated stigma of HIV medications is one of the major reasons why people fail to get into care and onto life-saving treatment, and it needs to be addressed.
Modern medication regimens can be remarkably well tolerated in the vast majority of people. For example, in the recently reported clinical trials of Tivicay (dolutegravir), the latest HIV medication to be approved by the U.S. Food and Drug Administration, only 1 or 2 percent of people taking first-line treatment stopped their regimen because of side effects. And in a separate clinical trial of over 700 individuals with multidrug-resistant HIV (and taking so-called "salvage" therapy), fewer than 2 percent stopped treatment for side effects. Nearly 80 percent of people with these very highly drug-resistant viruses became undetectable with our new treatments.
I also want to call attention to the dangers of altering the recommended dose of any HIV medication. Recommended HIV drug doses were thoughtfully calculated based on a variety of factors, balancing side effects and tolerability with the need to prevent viral replication and the emergence of drug resistance (or perhaps even more importantly, multi-drug resistance). Taking half the recommended dose of any drug, as ScotCharles reported doing with Isentress (raltegravir), very likely increases the risk of developing failure of one's current regimen and can jeopardize one's ability to take other current and future drugs in that class. Thankfully, ScotCharles eventually changed his mind -- hopefully before permanent damage was done.
The medical and patient communities alike need to become familiar with issues related to long-term survival with HIV. There is poor awareness of many long-term health risks, such as neurocognitive disease or osteoporosis, and even among those risks we are more aware of (such as depression and suicidality), we fail to take adequate steps to link those in need to the care they deserve. Medical decisions should be made in consultation with a knowledgeable health care provider -- hopefully in a trusting, nonjudgmental relationship.
Our early generation of medications often came with terrible effects, many of which ScotCharles experienced firsthand during his 20 years of HIV treatment. But the negative experiences of one person, however unfortunate, don't mean inevitability for everyone. The very positive and lifesaving experiences of tens of thousands of other patients, as well as the knowledge of a global body of scientific and medical experts, require equal consideration.
Suppressing HIV to undetectable levels is very important. Today, long-term, longitudinal studies show that suppressing HIV to undetectable levels prevents illness and death. Access to HIV care and treatment (and the undetectable viral levels that follow) is now starting to lower death rates in some of the most highly affected countries of the world -- and has also made pediatric HIV a rare thing here in the U.S. and Europe. Universal access to HIV treatment and viral suppression can save tens of millions of lives and prevent millions of new infections.
What we need now is an informed community and informed medical policy. Millions of lives are at stake.
Benjamin Young, M.D., Ph.D., is vice president and chief medical officer of the International Association of Providers of AIDS Care.