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HIV Undetectability Unimportant? Wrong.

January 21, 2014

Benjamin Young, M.D., Ph.D.

Benjamin Young, M.D., Ph.D.

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.

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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 This outdated stigma of HIV medications is one of the major reasons why people fail to get into care and onto life-saving treatment, and it needs to be addressed.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.


Copyright © 2014 Remedy Health Media, LLC. All rights reserved.


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This article was provided by TheBody.com.
 

Reader Comments:

Comment by: Ryan (Portland, Oregon ) Thu., Feb. 6, 2014 at 7:58 am EST
Thank you so much for this article. I like many other readers started to get depressed about the Scot article. I am 31 years old and am coming up on my one year anniversary of being +. I have been taking Complera and have been undetectible for 4 months now. I met a wonderful guy over the past year who is negative and am looking forward to proposing later this year. Scot's article instantly made me rethink my relationship because who would want to marry someone who will be a mess in a few years because of his ART? This article gave me hope that it will turn out ok. Thank you for the reasurance and the information for us younger/newer poz guys. Hopefully I won't turn out as jaded at Scot :(
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Comment by: Jerry (San Jose) Tue., Jan. 28, 2014 at 8:08 pm EST
Dr. Young, thank you for providing this much-needed rejoinder to ScotCharles' article. As you know, he's pursued this angle of questioning the usefulness of HIV meds in articles here for some years, to the extant that I'm starting to feel as if I'm reading the words of notorious HIV denialist Peter Duesberg. In ScotCharles' version, the infection is real, but the drugs seemingly useless or harmful. Having lived with HIV for 29 years, and seen steady improvement in medications during that time, I would have to say that ScotCharles' expressed "certainty" that HIV medications will inevitably cause disease in their own right remains empirically false. ScotCharles arrogates too much authority on HIV for those infected over 20 years, as if yesterday's side effects invalidates today's treatments. In fact, this whole matter of validating some people's side effects as substantive while at the same noting that others don't share that experience is an ongoing fault line in HIV discussions. I want to acknowledge ScotCharles' experience, but I honestly have not had the problems he describes. I've been on Atripla or its components for almost a decade, and I feel great. I have pursued higher education, studied languages, gone trekking in mountains, etc. So, why should I buy into ScotCharle's claim that I will get ill because of the meds that have been keeping me well? Having said that, I always look forward to ScotCharles' articles, in the same guilty way that my eyes are drawn to lurid headlines on supermarket tabloids. My main worry is that those who are newly diagnosed will become hesitant because of his false generalizations. We need more people who are living well with HIV to step up and say so, so we can put into proper perspective the long-dominant narrative of sickness and side effects that has wrongly been allowed to rule the day on HIV-care web sites.
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Comment by: Reginald T Brown (Brooklyn, NY) Sat., Jan. 25, 2014 at 11:48 am EST
Reginald T Brown (Brooklyn, NY) Fri., Jan. 17, 2014 at 4:06 pm EST
I am sorry that you experienced those side effects. I experienced adverse reactions until I got a 'cocktail' that works with zero side effects. We do not know the long-term effects because was stated, 'we are guinea pigs'. However
Viral undetectable status should be the goal. I was diagnosed HIV+ in 1986, AIDS 1997. My viral load has been suppressed since 2003. It is the same cocktail with 2 meds dropped and replaced by one. NO adverse reactions. I am proof that viral suppression without adverse reactions is possible. As long as something is possible why not try it and live until you die?!
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Comment by: DL (London) Fri., Jan. 24, 2014 at 7:59 am EST
Thank you for posting this Dr Young, Your article has really resonated with me. Atripla has bought me a whole new lease of life. The experience of one person does not mean everyone is going to suffer crippling side effects. Things have changed since the AZT days.
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Comment by: whitemaleUSA (USA) Thu., Jan. 23, 2014 at 8:42 pm EST
Thank you Dr. Young for writing this follow up article. After reading the ScotCharles article a week or so ago, I instantly fell into some sort of panic depression. I've been on the one pill a day regimen for a couple of years now after being scared to death to even start medication and I'm doing beyond well and just continue to do better and better with all my "numbers". If this ScotCharles person is real and not one of those hiv denialist, I truly feel sorry for him and I wish him well, but wow!, those few words he wrote just wrecked me, but fortunately only temporarily. Thank you again for inspiring hope in me again :)
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Comment by: Roberto (Tokyo, Japan) Thu., Jan. 23, 2014 at 8:21 pm EST
I was saddened and distressed when I read ScotCharles'
blog article. I thought "what misinformation!", even when based in the anguish of an unfortunate personal experience. As a positive, but sprightly 66 year old I am forever in debt to the brave souls who endured the trials and tribulations of HAART in the early days of anti-viral therapy. Their enduring legacy is today's life-saving drugs. A sincere thanks to Dr Young for setting the record straight.
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Replies to this comment:
Comment by: Ben Young (USA) Mon., Feb. 3, 2014 at 8:22 am EST
Thanks Roberto. I too share your gratitude to the tens of thousands of souls who volunteered (and continue to volunteer) to help advance our knowledge about HIV treatments. We have come such a long way because of their spirit.


Comment by: Eileen (Dover) Thu., Jan. 23, 2014 at 5:44 pm EST
I am really getting tired of hearing people bitch about taking "bad" drugs. Truth is Scot would have been dead 19 years ago if he didn't take meds. Be grateful you are ALIVE for F$%K sakes!
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