Cured: The People Who Defeated HIV

by Nathalia Holt

“Nathalia Holt presents a thorough account of the research that provides scientists with hope that a cure will one day be achievable... and her empathy shines through in her prose. This is as important a social history as it is a medical document.”—The Daily Beast
 
Two patients—each known in medical history as the Berlin Patient—were cured of the HIV virus. The two patients’ disparate cures came twelve years apart, but Nathalia Holt, an award-winning scientist at the forefront of HIV research, connects the molecular dots of these cases for the first time.
 
Scientists are known to maintain a professional distance from those they study, but sometimes scientists are not just investigators, they are caregivers, too. Cured illustrates that even in the era of high-tech and big pharma, the way doctors and patients communicate remains a critical ingredient in the advance of this science. Holt offers a kind of hope that the thirty-four million people currently infected with HIV need and a story of ingenuity, dedication, and humanity that will inspire the rest of us.

Genres: Nonfiction, Science, Medicine, Medical, LGBT, Audiobook, History

336 pages, Paperback

First published February 20, 2014

About the author

Nathalia Holt, Ph.D. is the New York Times bestselling author of Rise of the Rocket Girls, The Queens of Animation, Wise Gals, and Cured. She had written for numerous publications including The New York Times, The Los Angeles Times, The Atlantic, Slate, Popular Science, PBS, and Time. She lives with her husband and their two daughters in Pacific Grove, CA.

Reviews

[David · Rating 3 out of 5]

A good book overall and worth reading but it does have its shortcomings. The biggest plus is that the author is an HIV researcher and clearly knows the subject matter. The scientific underpinnings are presented throughout the book and satisfied my layman's interest in the immune system and its battle with HIV. There's enough science to remind the reader that there's a community of researchers exploring numerous fronts to attack the disease but not so much science that it feels like a lab report. The sections about the use of cancer-fighting tools to fight HIV were very interesting and another strength of the book.

The book falls a bit short in the telling of the stories of the people (patients, doctors and researchers) and with it's jumbled timeline. Character development isn't nonexistent but it's too superficial to draw the reader in. An extra 100 pages would have been very beneficial to the storytelling. The timeline at the end of the hardcover edition (p. 297) should have been in the front of the book. Christian's functional cure happened in 1998 and Timothy's was in 2009 but with all of the jumping back and forth it got confusing.

I won't discourage anyone from reading "Cured" but I will put in a strong endorsement for "And the Band Played On" (Randy Shilts) and "His Brother's Keeper" (Jonathan Weiner). AtBPO is a brilliant telling of the HIV/AIDS crisis during the 1980s on both a micro and macro level. It's one of the most gripping books I've ever read. HBK strongly blends science (the pursuit of gene therapy to find a cure for ALS) with the human story of a family rallying to support a member with ALS while the author deals with his mother's own degenerative genetic disease (lewy body dementia).

[Amber · Rating 5 out of 5]

I read this book in 36 hours. I quite literally could not put it down. It's absolutely riveting. I'm amazed it was already a few years old by the time I read it, especially since it made me feel like I should have known about it, the contents should have been front page news!

I am trained in science but only a BSc. I am very analytical and, even though this book is for the public, and has greatly broken down explanations of extremely complex notions, processes, etc., it is still quite technical, and even I at times had to grab an old schoolbook or a dictionary. But to be less technical would be trying to find pleasure in a Dr. Seuss book written with the rhymes replaced with Franz Kafka.
This book was fantastically written, going from a very human point seamlessly to how procedures were done, it was so well researched and respectfully keeps the privacy of those who request it, but the author is also a first-hand observer. It also ties in aspects of how and why such things played out as they did; where the disease came from, how it finally supplanted itself, how world events taking place at certain times had profound effects, and small aspects of other events that were in play that the reader may not have ever thought to consider.
As someone in the medical field, the author lays out several scenarios about researchers, volunteers, doctors' bonds with patients, and how politics and money can be so maddening for some of us and why.
I especially appreciated all the credit given throughout to so many people - not just doctors - but the small folks in the shadows.

I highly recommend this book to anyone, although the technical side can be tricky, the story that she lays out is well worth the read.

My serious congratulations to what was achieved by all in this incredible feat of science, and to the author for laying it all out smoothly for those of us that never even knew.

[Katie LeDuc · Rating 5 out of 5]

I thoroughly enjoyed this book. I thought the author did a wonderful job highlighting the human aspect of HIV/AIDS research as she discussed its progression from the 1990’s until now. Dr. Holt emphasizes the cultural stigmas that affect the ability to fund this research (most specifically the indifference of Big Pharma) and explains the compelling story of HIV and AIDS through the lens of the medical staff that were on the front lines for this new disease. I thought she also did a great job explaining the research in a way that is digestible for people outside of the medical community. At times it can feel a bit repetitive, but I think she places the repetition throughout the book to make it easier to reference before a new research concept. The book is incredibly informative and I will recommend it as much as possible to raise awareness!

[Juliane Hartig · Rating 3 out of 5]

The science is explained very well. The structure is somewhat erratic, a lot of jumps in time between patient #1 and #2, with the result that sometimes facts or processes are explained more than once. Also, the author only ever talks about Robert Gallo in the context of discovering the HI virus and says almost nothing about the importance of the scientists at Pasteur Institute who actually won a Nobel Prize for it. Still, the subject is highly interesting...

[Laura · Rating 3 out of 5]

I come from a lay perspective, meaning I don't have much knowledge of DNA,RNA, genetics, etc. Some aspects of this book were over my head, but I enjoyed reading about the 2 Berlin patients and the quest to "cure" HIV and AIDS. I am thankful to know there are researchers and scientists continuing to work on and build upon the knowledge gained. I am saddened that big Pharma looks at profit before the common good. Mostly I am thankful this book give us something about HIV: Hope.

[Jaclyn Nay · Rating 2 out of 5]

One of the doctors heavily featured in this book is Heiko Jessen, a Berlin HIV specialist and convicted sexual abuser of his patients. The author portrays him as a hero or something close to it. While he hadn't had any convictions or public accusations when this book came out, the articles that I have included below make it clear that rumors have been swirling about him since at least the early 2000's. Nathalia Holt interviewed dozens of people for this book, many in Germany. It's hard for me to believe that she didn't hear any allegations during this time. If she didn't hear any, I have to wonder about her competence as a researcher. If she did hear them and chose to portray him as a wonderful doctor, she is part of the problem of abuse cover ups. Neither speaks well of her or of this book.

I had a hard time deciding how to rate the book. I have lost faith in the author to portray things accurately. I did a large amount of outside reading. Based on that, I believe that the medicine is portrayed accurately in the book. Due to that and the fact that I really liked the book otherwise, I am giving it 2 stars instead of just one. I originally read this book 8 or 10 years ago and found it fascinating. At the time, I would have given it either 4 or 5 stars. A couple of years ago, I googled Heiko Jessen to see if there had been anything new on the topic of his research or his patient, Christian Hahn. One of the first results was an article from the Columbia Journalism Review on sexual assault allegations against him from patients. The article describes how Buzzfeed Germany and Vice Germany jointly published accusations against him. The writers spoke with 30 separate accusers. In the months following Vice and Buzzfeed publishing their articles, they were contacted by 35 other men who also alleged sexual abuse from Jessen. I find it hard to believe that in months or years of writing Cured, Nathalia Holt didn't come across any of these accusations. Many gay groups have refused to refer people to Jessen for years due to hearing repeated allegations from the men they served. I feel lied to by this book. Jessen is no hero. He is a monster who has been enabled by people like Holt.

I reread this book recently in order to see if the book was as I remembered. It was mainly as I remembered but a couple of details jumped out at me. Holt repeatedly describes how affectionate Jessen is with his patients. She mentions multiple times that he hugs his patients on a regular basis. On page 122 Holt states, "Jessen's patients loved him like a father and he loved them right back, hugging his way into their hearts." Page 270 says, "He loves his patients and treats them tenderly. He calls his young male patients his baby boys. He worries about them and takes their personal turmoil to heart. He sees his patients as part of his family." Most patients sounded like they were okay with it, but at least one (Timothy Ray Brown) found it off-putting. Reading this while knowing about the allegations against Jessen makes me see that physical affection as grooming behavior.

One other situation from the book stood out. On page 206-207, Holt describes how in the late 90's or early 2000's (the year is not specified) Jessen was taken to court for improperly distributing methadone. Holt states that doctors in Berlin have to have a special license for opioid addiction in order to be allowed to give methadone to patients. Holt describes this as a mistake and as an oversight. Jessen was terrified that he could lose his license. He was only given a fine and a short probation. I have to wonder if it really was just an oversight or if he just does whatever he wants because he knows that he can get away with it. Holt could have described what happened more neutrally. The account of what led to the discovery that he was improperly providing methadone makes me wonder if she just took Jessen's word for what went on. She states that hostility within the small medical community stemming from sensational headlines about a cure (which was a word Jessen had been careful not to use) led to numerous police reports being filed against Jessen. She does not state who filed these reports but it is implied that it was other medical providers who disagreed with his methods. "The claims were damning: They accused Jessen of cheating health insurance companies and income taxes, and receiving pharmaceutical and pharmacy money illegally. They claimed that Jessen was falsifying HIV diagnoses in an effort to increase his income, since he was paid more by insurance companies for HIV-positive patients." Holt states that when police raided his practice due to these reports, they found a few errors. She says that the largest of the errors was the methadone prescribing but does not state what the other errors were. Due to her either missing or ignoring other serious allegations against him, I have to wonder about the other "errors."

I no longer know what to think of this book. While the medicine in it is interesting and I wish that it would spur further research into hydroxyurea as an HIV treatment, particularly in the early stages of infection, I have concerns about the author's version of events. I recommend reading the 3 articles below if you want to know more about the accusations and medical board proceedings against Jessen.

https://www.buzzfeed.com/de/julianelo...
https://www.cjr.org/special_report/he...
https://www.tagesspiegel.de/berlin/36...

These videos explain the case and the situation in Germany regarding defamation laws. They are worth watching if you are interested in the case and the surrounding issues.
https://www.youtube.com/watch?v=ZJvWB...
https://www.youtube.com/watch?v=AZvey...
https://www.youtube.com/watch?v=Z5JRQ...

[Evelyn · Rating 4 out of 5]

An extremely accessible book, the book works perfectly as a balanced explaination of HIV/AIDs and the various 'cures.' Holt does a fantastic job simplifying complicated science and summarizing research.

However, the book does little to create a lasting emotional connection to the people involved. Their struggles and triumphs are described too clinically and matter-of-fact to generate any emotional response from the reader.

[KshamA · Rating 5 out of 5]

A fantastic account of the ways in which human will, curiosity, initiative and persistence opened possibilities, that were otherwise written off. At the same time the ubiquitous matters of business-worthiness, need for endorsement by leaders to be taken seriously and the lack empathy in health systems is presented up to the effect. Simple to read, immensely informative and yet has a heart-warming tone.

[Marc Faoite · Rating 5 out of 5]

In excess of 35 million people suffer from HIV/AIDS on this planet. More than 10% of these are children. Over 1000 babies are born with HIV every single day. It wasn’t always this way.

When AIDS first came to the public eye in the 1980s there were only a few thousand people diagnosed as infected. It was perceived as a medical mystery but wasn’t seen as a very big problem. It was a disease that carried quite a social stigma. It was mainly prevalent in homosexual men at a time when the gay community was not as accepted as it is today. Back then no one would imagine that gay people would be able to get married or gain mainstream acceptance. As a result people were hesitant to talk about AIDS and funding research or finding a cure was very low down the list of priorities for any government or pharmaceutical company.

That explains why when a cure for HIV/AIDS was found that it came from elsewhere in the medical community. Nathalia Holt’s fascinating book Cured tells the story of the ‘Berlin Patients’ – the first two people to have been functionally cured of HIV/AIDS. She offers fascinating medical insights into how the HIV/AIDS virus works and how it can be tackled. It is clearly presented in terms and analogies relatively easily understood by the motivated layperson.

Sometimes it reads like a thriller with backstabbing scientists and vials of blood being couriered around the world. We meet humanized mice that have been genetically modified to have human immune systems so that they can be used in experiments. Then there is also the predominant human interest of this book. It is the story of a few men and women and how their relationships changed the way HIV/AIDS is treated today.

The most amazing and mystifying part of the story is that even though the Berlin Patients were cured of HIV/AIDS, and meticulous records were kept of their treatment, there has never been an attempt to repeat their treatments on a larger scale. Both men were cured by different means and while elements of their cure have been replicated there are many aspects that seem to be wilfully ignored, particularly what seems to be the proven effectiveness of early and aggressive treatment.
The understated but important element of this book is the discussion of the relationship between big pharmaceutical companies (Big Pharma) and medical care. Though it only makes up a fraction of the book’s content it is important in understanding the present status quo. The main impetus of her explanation can be summarized in one quote: “If no one can make money even the best drug will fail.”

As things stand there are treatments available that allow people suffering from HIV/AIDS to extend their lifespans significantly, however these treatments are extremely costly, often reaching sums in excess of 75,000 USD per year.

Wouldn’t it be better to use what was learned from the Berlin Patients to develop a cure? Better for whom? The stark reality is that Big Pharma doesn’t exist for the benefit of mankind. Its principle raison d’etre is to produce profits for its shareholders, something that it succeeds at quite gloriously. If the needs of the general public and Big Pharma intersect, then well and good, but if they don’t … well business is business. The bottom line is the bottom line. If it is more profitable to keep people on expensive medication for the rest of their lives than offering them a cure then there is little incentive for Big Pharma to invest in finding a cure. Follow the money. Furthermore some drugs that have been found to be useful in the treatment of HIV/AIDS and were used with one of the Berlin Patients, are largely ignored because the 30 year patent during which the drug company can make a profit has expired. Big Pharma would rather develop something new that can potentially bring more value to their shareholders than invest in the applications of pre-existing drugs that will bring profit to any other company with the wherewithal to replicate, manufacture and distribute the same molecule. Not only do Big Pharma have little financial incentive to find a cure, they effectively have a financial disincentive.

The end result of this is that tens of millions of people suffering from HIV/AIDS who already don’t have access to expensive drugs won’t get access to a cure either.

There is, however hope on the horizon. Thankfully not everyone investing in HIV/AIDS research is purely motivated by financial gain. There are benevolent donors like Bill and Melissa Gates, among others, who have donated significant sums that through the tireless work of dedicated researchers are translating into hopeful prospective treatments and moving ever closer to effective functional cures for HIV/AIDS. Thanks to these people there are many new clinical trials on-going in the fields of stem cell transplants and gene therapy. Both of these seem to be promising areas of research that are working to modify and create immune systems that HIV can’t attack.

Cured is a must read for any medical practitioner, or medical student, or anyone diagnosed with HIV/AIDS, or anyone who knows someone who is, or any interested person who lives on a planet where tens of millions of its inhabitants are presently living and suffering with HIV/AIDS.

[Ari · Rating 4 out of 5]

This was SUCH a must-read. Holt explains so well for non-stem people like myself. My only criticism is that it could be a bit dense at times. So cool and interesting! There’s a lot of work/research still to be done :)

[Andrew Degruccio · Rating 5 out of 5]

An important update on the science behind the search for the cure for HIV. Special emphasis on the politics, finances and egos involved. Well written and an easy read.

[Reagan Styrt · Rating 3 out of 5]

While the concepts and treatments discussed in the book were interesting, I found the book as a whole tedious and poorly written.

[Anthony Shea · Rating 5 out of 5]

I read this book with a really good friend and loved it. It was really informative and was great for a general audience.

[Laura · Rating 1 out of 5]

The story of the patients was very interesting, but the author's dramatizations put me off.

[Melissa · Rating 5 out of 5]

a little confusing, and dense, at times, but great for anyone interested in HIV, medicine, infectious disease or gene therapy.

[Christie · Rating 3 out of 5]

This book covers the two Berlin patients who both were functionally cured of AIDS, and what that might mean for the future. I enjoyed the author's attention to the lives of the two men, as well as their doctors and researchers. The science was a bit dense at times, but the author does try to explain things in laypeople terms and I do understand a lot more about HIV and how it works than I did before. It will be interesting to see how things proceed from here. I would recommend this to people interested in medical science.

[Amber · Rating 5 out of 5]

This is absolutely one of the best books written by an obviously highly qualified research scientist for lay-people about a very complex disease. Until I just read this book, I had a very limited understanding of DNA, RNA and all these other functions of our cells and how they are affected by HIV/AIDS and/or cancer (even though I've been exposed to these concepts in several science courses in my past).

The author describes the processes and basics in a very professional way without so much of the scientific jargon that tends to make my head fall off. You begin to understand how the two Berlin patients differed in treatments; one was "cured" through early, aggressive therapy and the other through gene therapy specific to his HIV/Cancer situation. Yes, that is simplistic - but you see how excited I am that I can break it down? Which brings me to - Einstein said, "If you can't explain it simply, you don't understand it well enough". Holt understands HIV/AIDS and the most promising research completed (or in progress) to cure this terrible disease. There is humanity within the pages and I appreciate her concern for those personally affected by the disease.

I will recommend this book to everyone who is even remotely interested in; HIV (and a cure!), scientific research or writing in a concise/approachable manner about a complex topic.

I was a first-reads winner on Goodreads

[Melissa Lindsey · Rating 5 out of 5]

There was a line in here, "The sight of so many young men destroyed by disease . . ." that made me realize that I have been completely isolated from the HIV/AIDS epidemic. It did not impact anyone I knew and thus I have been able to more or less ignore it. But as I read through this book, compelled primarily by a love for science, I developed an overwhelming compassion for those communities devastated by this virus. And this, I see, is part of the power of this book. Near the end, Holt write, "Sometimes the sway of a great story is as powerful as the most comprehensive dataset. We can't underestimate the impact a story has on the course of science." This is why I read -- books like this one have the power to change people in ways they never expected.

And in addition to being a story, this book holds great science writing for the lay person. Yes, from time-to-time I had to reread or dig back into the recesses of my brain for those rarely used memories of General Biology. But overwhelming, this is a story of a virus and those whose lives were changed through their exposure to it -- whether that exposure was carrying it in their bodies, loving someone who carried it, or trying to find a way to stop the virus from destroying so many lives. For people like me who know so little about the disease, I highly recommend this book.

[David · Rating 3 out of 5]

author is herself an HIV researcher, and she sure knows the biology, the obstacles to drug development, the +/- of various animal models etc. Unfortunately my level of comprehension varied inversely with the intrinsic importance of the subject.

I was all over the discussion of how so-and-so got relegated to presenting his data in a poster session instead of giving a talk b/c not well-known, or the infighting over order of authorship, or the hassle of responding to 30 pages (!)' worth of reviewer feedback on a manuscript, but the ins and outs of a particular strategy for drug development in view of the insidious characteristics of HIV etc. etc. were much tougher to grasp.

minor issue i guess, but it did strike me as odd that two different patients a decade or so apart came to be known in the literature as "the Berlin patient", with one of them now fully identified by real name yet still given the generic label. Not that useful for keeping the characters straight. From now on, i'll ask my students and colleagues to call me "The Rockville Reader" and hope no one else has taken that handle already.

[V. Briceland · Rating 4 out of 5]

The ability to explain complex scientific issues in layman's terms is a rare enough gift. Nathalia Holt's ability to explicate the intricacies of the HIV virus and its workings without condescending to the reader is nothing short of astonishing. In her assay of the various clinical attempts to analyze and develop strategies to rid the virus from the human body—or at least to effect a 'functional cure' for those affected by it—Holt manages to shed light into areas of medicine and biology normally murky to those of us with little exposure to the science of HIV and AIDS. In doing so, she has created a comprehensive and readable survey of current approaches to treatment—and identifies areas in which attention and funding is lacking.

Holt's book is also the only scientific work I've read in which a researcher is romanced by an Arab prince on a white horse. Thumbs up for that alone!

[Bridget O'Connor · Rating 2 out of 5]

Holt takes on a complex medical topic and tries to present it to the laypublic. I found this book to be a fine introduction to the history of HIV in research and in politics. Many of her explanations of dense biologic events are wonderful and easy to follow along with. What I did not like was how Holt jumps around in history describing the story. Many times she discusses an individual in great detail including the full career path, only in the next chapter to discuss the individual's work/life without reference to the time. I found the book harder to follow towards the end when the cast of characters greatly increases and it's not clear if she's referencing work from the 1990s or the 2000s.

[Neil H · Rating 4 out of 5]

Nathalia did a great service in my opinion. There was many times the medical technical terms and their basic functions were not equally grasped. Ms Holt repeated them when referenced throughout the narrative was a welcome. I enjoyed the book and it provides much optimism about the future and the great legacy scientists, researchers and practitioners are establishing now not just for AIDS but terminal diseases.

[Neil H · Rating 4 out of 5]

Nathalia did a great service in my opinion. There were many times the medical technical terms and their basic functions were not equally grasped. Ms Holt repeated them (not excessively I might add) when referenced throughout the narrative was a welcome. I enjoyed the book and it provides much optimism about the future and the great legacy scientists, researchers and practitioners are establishing now not just for AIDS but terminal diseases.

[BLACK CAT · Rating 4 out of 5]

Full with details of genes and processes related to the virus, cancer and our immune system. 2 amazing advances:
1) detect fast, start treatment fast and be virus free.
2) people with a mutation of certain gene are immune to the virus.
It also talks about the icons that discovered these great discoveries.

[Jackson Ryan · Rating 4 out of 5]

Non-fiction about the two Berlin patients - two guys that were 'cured' of HIV. Super into this book because it deals with a very... controversial? Very divisive kind of disease that people don't really know how to deal with and dealt with it in a very human and sympathetic manner while not at all being scant on the reality of the disease. Very very good.

[Amanda Kramers · Rating 4 out of 5]

I found this book interesting and some of the content in the book interesting but as I was reading it I couldn't get over some of the confusing talk. I don't usually read non-fiction but this one wasn't too bad

[Susan Ozment]

Loved this book. early cures of HIV. Anomalies? Can they be replicated? Is it feasible to give HIV sufferers bone marrow transplants since it cured one patient of AIDS? German doctor (80's?) had one patient that was cured but no one knows how.

[Dena · Rating 3 out of 5]

Interesting.

[Beth Shultz · Rating 4 out of 5]

A remarkable book. An encouragement for all who suffer from HIV. A good book I won from goodreads.

[Denise Mundier · Rating 4 out of 5]

Very interesting, but I could have done without the back and forth in time with no time travel plot. You just can't feel good about big pharmaceutical and the way they toy with our lives for profit.