Friday, September 26, 2014

It's Duh Study Time Again

As a health writer, I read many press releases about articles and studies that have been or will be published in the medical journals. Some of these are quite interesting while others are, quite frankly, head scratchers.

I've written before about my idea of Duh Studies - studies that make you think, "Seriously? They had to study that?" This week, I found two great entries for the Duh Study database, two days in a row. I don't think that has happened before:

"Pain keeps surgery patients awake, extends hospital stay." Did you know that? That if you have uncontrolled pain, you can't sleep, which could in turn affect your ability to heal? To be honest, this particular one bothered me because pain is an issue that is often not taken seriously. I wrote about the myths involved in the whole area of pain when I was preparing to give a talk on chronic pain. But when we need studies to tell us that people who have just been cut open, had joints taken out and replaced and then sewn back up have pain? Wow. Just wow.


"Not all Hispanics are the same when it comes to drinking." Another doozy. Do I even need to write down what I find offensive about this one?

"A new Michigan State University study indicates that the risk of alcohol abuse and dependence can vary significantly among different subgroups within the population."

I'm just shaking my head on this one.

Some people may say, "what's the harm in these?" While there is no actual harm (that I can think of) in these types of studies, I do think that they lower the value of research overall. What kind of impression do these types of findings give to laypeople who read that researchers are spending such valuable time and money in these ways? One can argue that it is important to study obvious things in order to move forward to more intricate details and perhaps this is true. If that is the case then perhaps it's the media's fault, for even making news out the findings? I don't know.

Do you have any Duh Studies to add?

Tuesday, August 12, 2014

Why did the Robin Williams news hit so many so hard?

We hear of celebrity deaths frequently. Old favourites die of old age, new favourites may die of drug overdoses, illness, or in accidents. There are also some suicides sometimes. The news of their death makes the rounds, now much more quickly than ever because of the Internet. We see retrospectives of their work, people comment on beloved scenes or events, and then we move on.

But yesterday, the Internet exploded with the news of the death of comedian and actor Robin Williams. From the first moment I saw the news on my sister's Facebook page to just before I began writing this, my own FB and Twitter feeds were overwhelmed with posts about his death, a suspected suicide. Why is it that Williams brought out such a reaction? Why are people quite literally in tears at the news? While I can't claim to know the answers, I have my theories, brought about by my own experience with depression.

For many people who have or have had depression, there is that knowledge that it may become too much to bear, that you may not be able to take it any more. Some of us have also lost a loved one to suicide, which makes that feeling even worse. And when a person as out there as Williams was can't take it any more, it's scary. It makes some of us feel more vulnerable, more exposed, more "that could have been me."

There is also the shock that if someone with his resources, with his support systems - if he can't make it, how can the average person? From all the reports I've read and listened to since last night, Williams was a kind, giving, gentle person who went out of his way to help others. And if he couldn't feel that the help was enough for him, what does that mean to the rest of us? There is also the acknowledgment of the pain he must have been feeling because many of us can identify and remember how horrible it was. To know that someone else felt that way - it is heartbreaking.

And then there is the added stigma of mental illness, of discussing it, of admitting it, of putting it out there for others to see. Depression, anxiety, bipolar, schizophrenia - those are all words that make many people too uncomfortable. We hear of violent crimes and if there is any hint of a past with mental illness, it is often mentioned in media reports. It's even part of our language, that someone must be crazy, mental, schizophrenic, or manic if he or she does something outside what we perceive to be normal. Who would want to admit to an illness that is connected to only bad things?

So my biggest theory is that Williams's death hit too close to home to many and it opened up a conversation that many people are afraid to have. Williams graced us with his humour and his talent ,and seemed to have it all. Yet he didn't. He missed something incredibly important - good mental health. It reminds us that we are all vulnerable.

Here in Quebec, as in other jurisdictions, we've had many media campaigns about understanding depression, but it's hard to tell if they've been effective. Right now, how to ask for help and numbers to call are all over social media. People are saying that they hope that his death will begin a conversation about mental health, depression in particular. But is this effective? Yes, right now there's a groundswell of support for people who may be suffering, but will this continue? Or does this become just another blip on the radar - not unlike the big uproar over Corey Monteith's death, or Philip Seymour Hoffman's death from overdose? The drug issue was everywhere then - but it drifted away very quickly.

The Williams experience - watching his sometimes over-the-top manic comedy could be uncomfortable sometimes. There's no doubt that Robin Williams was a comic genius. This morning, a Montreal radio host was talking about a show Williams did here that started with a 20-minute piece on our city. This wasn't a "I love [insert name of city] and I'm glad to be here" piece. It was one where he'd obviously done his homework and he knew where to jab for a good laugh. But other times, his comedy seemed manic, like he had to keep going to get a laugh or else he wouldn't know what to do. I don't know if that was the case, but it was a feeling I got sometimes, and those times it made me uncomfortable. Maybe it hit too close to home - who knows?

And yet, he was also a wonderful dramatic actor. He could set aside that comedic aspect and really pull you into a movie, making you believe in the character he portrayed. His drama had an edge to it that I couldn't quite place. I preferred his dramatic roles over his comedic ones, but even in the comedies, something else came through.

He will be missed. There will be more tributes. The next Academy Awards presentation will honour him. He'll be remembered when we see the movies on Netflix or where ever else we watch them. But will we have changed how we see depression? Sadly, I don't think so.

Monday, August 11, 2014

Q&A with Heather Boerner, author of Positively Negative: Love, Pregnancy, and Science's Surprising Victory Over HIV

On August 1, I posted a review of Heather Boerner's book Positively Negative: Love, Pregnancy, and Science's Surprising Victory Over HIV.  As a writer, I'm often curious as to why other writers choose their topics and why they choose to focus on certain ones. So, as a follow-up to my review, here are some questions I asked Boerner:

Why did you write the book?

I wrote Positively Negative because I was blown away by how far the science had advanced and how few people outside the HIV community were aware of it. When I first talked to the Hartmanns in my book, the couple who had unprotected sex and had a baby without passing on the virus, something shifted for me. I began to hope that our collective relationship with HIV and people with HIV could be different—that it didn’t have to be a relationship based on aversion and fear, that we could see people with HIV as just like us, whoever that is. And really, the two couples in the book are the most normal people in the world. Their desire for babies is totally normal. And now that the virus has been tamed, it’s also safe.

What is it about HIV that you find fascinating?

The virus itself is fascinating. Our understanding of how HIV cloaks itself from the immune system, how it lingers for years—the recurrence of HIV in the so-called Mississippi baby is proof—is so interesting. But more than that, I’m fascinated by our cultural understanding of HIV. HIV, the big boogeyman, is really another character in the book. The *idea* of HIV vs. the reality. For many of us—and I counted myself among this number until after writing the book—our idea of HIV froze at its most horrifying stage. I watched The Normal Heart recently, the HBO film adaptation of one of Larry Kramer’s plays about HIV and I am still haunted by the deaths of those men and by the exploitation and humiliation they suffered at the hands of healthcare professionals. If this book taught me anything, it’s that HIV stigma still exists in the medical community. HIV won’t end until we root that stigma out. The emergence of a once-daily pill for HIV-negative people to prevent the spread of the virus is a real opportunity to change medical practitioners’ minds.

Obviously, we'd like everyone to read your book, but who do you think needs to read it the most?

The people who need it are the couples like the Hartmanns and the Morgans, and the non-infectious disease doctors and NPs (nurse practitioners) who treat people who may need or ask for PrEP. In doing the crowd funding campaign to get Positively Negative published, I offered a perk wherein a donor could speak to me on the phone about the book. The one person who took me up on that was a woman in Japan who’d found the book and is in this very situation. She desperately wants to know facts, and it’s so hard to get them. I want couples to feel less alone. And I’d love for healthcare providers who don’t think of HIV as in their wheelhouse to read it so they can feel comfortable prescribing PrEP or counseling their patients on this issue without their own fears coloring their practice.

Anything else you'd like to say?

Just that the other group of people who I think will relate to this book but may not think so at first glance are couples who have experienced trouble getting pregnant. This is a human story, a science story, and it’s a fertility story. I bet any woman who’s had trouble conceiving might find the story cathartic. I hope for everyone who reads this that they feel less alone. I also hope that those of us without anyone in our life with HIV, that we now feel like we do know someone with HIV, that our heart opens to this experience in a way that we are typically guarded against.

Now to my blog readers: Do you have any questions you think I should have asked?

Friday, August 1, 2014

Book Review and Discussion of Positively Negative: Love, Pregnancy, and Science's Surprising Victory Over HIV

Positively Negative: Love, Pregnancy, and Science's Surprising Victory over HIV is a book that made me bend my "I don't write book reviews" stance. I am asked regularly to review books, but it's not something I like to do. Since liking a book is very subjective, one I may dislike may be another's favourite - but I do make exceptions when I think a book is a must-read.

Positively Negative: Love, Pregnancy, and Science's Surprising Victory over HIV by Heather Boerner, is about couples that want to have a biological child, but the male is HIV positive. It's a short book - you can read it in one dedicated sitting if you want. But don't be fooled - Boerner uses her words wisely, weaving scientific information with real couples who have to make life-changing decisions.

When I graduated as a nurse in the early 80s, we just started to see our first patients with AIDS in the Montreal-area hospital where I worked. The fear was everywhere as healthcare professionals learned how serious the virus was and how the virus spread. Unfortunately, this was also the time when it was considered to be a "gay disease" and a "promiscuity disease," which delivered a whole other set of problems and issues.

HIV and AIDS forever changed how we worked with patients. When I studied nursing, we rarely ever used gloves. As students, we were only allowed to don gloves if we were going to be giving intimate care or had to clean up body fluids. Otherwise, gloves were forbidden because the skin-to-skin, the contact, was considered vital for a good connection with the patients. With HIV and AIDS, this changed. We were told we needed to assume that all patients were infected - universal precautions, it was called. If we treat all patients as infectious, we reduce our chances of being caught off guard and becoming infected ourselves. We were told to wear gloves whenever we touched a patient - even if giving a back rub. While I see the practicality in the advice, it changed how we saw and treated patients - and this way of thinking stayed with me all these years.

I don't work clinically any longer; I don't work with people who have HIV or AIDS. As s result, I've not really thought about it very much since those early days, other than when I read news stories. So when I bought Boerner's book, I wasn't sure what to think. I had the pleasure of meeting her in March and I listened as she talked about the project and what it meant to couples who shared their stories. I do remember thinking that breezy Denver night, "I never realized that having a biological baby with an HIV positive partner was even an issue to be discussed." I have to admit, I was taken aback at how little I knew of the topic and I waited for Boerner's book to be published.

The urge to have a baby is very strong among many women and it's no different for some who have HIV positive partners. And until recently, the risk of allowing such a pregnancy was unheard of - or it wasn't discussed. Boerner's book follows the paths of two couples who did go ahead and have naturally conceived children. She speaks with experts on both sides of the debate, and another mother who made the decision without medical advice or interventions.

It is well written, well researched, and worth your time. Let me know what you think if you read it.