Wednesday, November 11, 2009

On H1N1, Vaccines, and Differing Views

I haven’t written too much about H1N1. Partially, this is because as an avid reader and headline scanner, I suffer a bit from H1N1 fatigue. From local news reports to national updates to reminders and policy talk at my job, H1N1 is everywhere.

But it’s also because everyone seems to have an opinion about the H1N1 vaccine. And lately it seems I can’t go anywhere without getting a hearty dose of other people’s strong opinions about it in my face.

It’s a controversial topic for many, and I get that. I respect other people’s right to make their own decisions about their health. The thing is, I don’t need to agree, or be convinced my own decision about my health is wrong. So when I’m getting my blood drawn and stressed about getting to work on time because the line is long and my veins are wily and unyielding, I don’t really need a lecture from a health care professional on how flu shots are full of toxins and poisons we shouldn’t put in our bodies. (While flanked by posters advocating flu shots, by the way.)

You might be drawing my blood, but that doesn’t mean you know anything about my health or my personal beliefs, or how I might interpret your unsolicited “advice.”

The same goes for the forwards and attachments that appear out of the ether in my inbox warning me against the evils of vaccinations.

Because you know what? I would do anything for an H1N1 shot right now. For months every single doctor and nurse on my medical team has repeated the same mantra: I am absolutely high risk and should get the shot. The problem is, they just aren’t available yet. I have reason to believe I can get one in the next month, so if I can avoid infection until then, I will be in good shape.

At the same time, it is not as possible for me to read the headlines but stay on the sidelines. Students in my classes now have the flu, and each time I get an e-mail about a 104-degree fever I worry about them, and about how many of us were exposed.

I am not a paranoid person, and considering I spend 7-8 months a year continually sick, I am pretty used to infections. Generally speaking, I take reasonable precautions and reasonable risks with my health.

After I read this NYT article on parental views about the H1N1 vaccine, I knew I couldn’t resist the pull of breaking the silence any longer. In discussing society’s willingness to be vaccinated during twentieth-century epidemics like polio and smallpox, historian David Oshinsky is quoted as saying, “People had a sense of risk versus reward and listened to public health officials.”

That line really resonated with me, because that’s how my doctors and I have approached the H1N1 shot. For me, the risks of contracting H1N1 are much, much more severe than any risks of getting the shot. (And yes, I get the seasonal flu shot every year without incident, and since they are made the same way, I personally do not have fears about the production of H1N1 vaccines.) Vaccination and communicable disease prevention are some of public health’s greatest triumphs, in my view, and I am incredibly grateful modern medicine gives me and my sub-par immune system some protection.

After all, otherwise healthy people face serious complications from H1N1, usually in the form of secondary bacterial infections (pneumonia) that linger because the flu virus damages cilia in the respiratory tract.

I don’t have working cilia. I also have bronchiectasis, which increases the likelihood of bacteria and mucus festering in my airways, causing severe exacerbations. That sounds like an awesome combination, doesn’t it? I can catch a cold in September and not recover until March, and I’m not exaggerating. I’ve almost died from infections on multiple occasions throughout my life, and have spent weeks in isolation units of hospitals. There are few antibiotics left that can squelch the secondary bacterial infections I am so good at growing. As much as my friends joke I need to live in a bubble, I can’t.

But if there is a way for me to prevent contracting H1N1, sign me up. This is the decision that makes absolute sense for my individual circumstances, and it is one every medical professional I know espouses.

I know every person’s situation is unique. For example, I know that for patients with certain autoimmune conditions, the risks of getting a flu shot are very real and very serious, and I would never presume to convince them otherwise.

But that’s just it—these are the kinds of conversations that should take place between doctors and patients, between the people who know the most about an individual’s medical history and constellation of risks. When people do ask me, I am always honest about how I feel about the shot for me, but emphasize I am not a medical professional.

I’m not saying I’m unwilling to engage in dialogue or debate about this, but there’s a difference between informed views on subjects and imposing personal views on other people. I know vaccination in general is a hotly contested topic right now, and there are so many voices on both sides. I don’t want to start shouting. Honestly, I just want to get my shot and get through this winter.

So please, please don’t assume to know the particulars of my situation and tell me I am crazy to pump my body of toxins. No matter how strongly I feel about opposing viewpoints on this, that is not a productive way to have a conversation.

And the way I see it, I’d be crazy to turn down the chance to protect my dodgy lungs.

10 comments:

Sher said...

Hi Laurie,
I very much agree with you about making an educated choice for what is medically best for you. People mean well when they offer advice to us, but don't understand the sometimes harrowing illnesses we deal with.

I'm like you in that I'm sick a lot--this is due to severe allergies and asthma. It's a fact of my life that most people can't understand. They say it's "all in my head," etc. Doctors have proven that false. I am the way I am...just like you are the way you are...we can't be fixed, but we can manage our conditions, and this will help us to lead the best possible lives.

If the H1N1 vaccine is right for you--go for it! I'm actually for the flu shot and would get it if possible. They won't give it to me right due to currently having an upper respiratory infection. That's the way it goes sometimes! :0)

Anyway, I just wanted to say I agree with you--each of us needs to make the decision that is best for us and our situations. Everyone is different.

Thanks for sharing your viewpoint!

Have a great day,
Sher :0)

Helen said...

I absolutely agree.

Nobody has the right to tell us what to do for our own health, especially when many of us live with chronic illnesses that others know nothing about.

Thanks for a great post.

mellzie19 said...

I hope you do well this winter! I really enjoy reading your blog. I have lupus and write a blog called College Life with Lupus. It seems everybody is sick. I thought I was getting the flu on Monday when I woke up with a fever, and it turned out to be an ear infection. If I get the flu I could get very sick as well because I am on some serious immunosupressants.

I live in the same city as you and the have not been able to get the H1N1 shot either. I also have not been able to get the regular flu shot because my school (in Western MA) ran out! So I am hoping that I can avoid the multitude of sick people around me until I get the shot.

Thank you so much for your blog!

Thank you so much for you blog.

Laurie said...

Thanks for the feedback! It's a tough topic because people are very rarely neutral about it...and don't often hesitate to share that.

Sher, I know what you mean. I've had times when I've been too acutely sick to get a flu shot, and that's a frustrating situation.

Mellzie19, thanks for the comment. As a former "sick girl" in college and someone who works with college students every day, I am very interested in your perspective. It's even tougher to avoid getting sick when you're in the dorms or classrooms, so I hope you stay well!

Kelli said...

Thanks for being so open and honest. Your words speak for me as well.
I have MS and my husband has serious cardiac problems and no vaccine to be found. This is craziness.

Rachel said...

The reason I don't want to get it is to leave it for those who really need it, people like you, while it is still in short supply.

Even with the diabetes, I'm fairly healthy. Yeah, colds and viruses tend to knock me out longer than most "healthy" people, but I know plenty of people who need it more than me.

Sarah said...

Laurie,
this is a great topic, particularly with the growing controversy around the implications of vaccines for younger crowd and their controversial relationship to autism, if you believe there is one. I feel like we as a culture needed to have this conversation a long time ago, and had a great opportunity around the Gaurdasil vaccine- however, I think Gaurdasil's debate was strongly overshadowed by some moral/religious/value based arguments, rather than health based arguments.
However when that vaccine came out, I had a conversation with my doctor about it. we looked at my family's medical history and at the rate of female-specific cancer in my family, and made the choice to get me the vaccine. It turns out I had a very negative shock reaction to one of the shots (and am grateful it had no long term affects) but it put the vaccine risk front and center for me for a while. Bottom line is I knew my risks going in, and making an EDUCATED decision was the best possible process. I am not sure when we, as a health community, decided blanket treatments were a good idea, but I'm now glad to see the chronic illness community stand up and say "maybe not for me" and bring back the individual treatment emphasis in their healthcare.
I wish all you h1n1 vaccine seeking folks good luck and good vaccines SOON!

Tsu Dho Nimh said...

Laurie -
Anyone drawing blood is a very low-ranking "health care professional".

All it takes is a HS diploma and a short course in finding veins to be a phlebotomist.

I hope you said something to the clinic management about the unsolicited medical advice from someone who was not a doctor, someone who had no idea of your clinical history.

Laurie said...

Appreciate the feedback, everyone!

Rachel, I hope supply soon catches up with demand so everyone with chronic medical conditions who should have a shot gets one!

It's a tricky line in terms of individual care and vaccination. Historically, success over things like polio and smallpox (among many others) says to me that blanket treatment saves lives. Of course there are exceptions; I know someone with Guillains-Barre syndrome, and I know a shot could be catastrophic. What I find interesting now is that the conversation has shifted so far the other way that people feel it is okay to criticize me (and others) for wanting vaccinations. Sarah, I agree with you on the point that these decisions should be educated ones, and I think that is where some of the problems start. What constitutes an educated decision, and where are people getting their facts? Anyway, that could be a whole other post...

Tsu Dho Nimh, I hear you. My emphasis is on the word "professional" here--I don't care what the position is; I find it totally inappropriate to push your views on someone when you have no idea of the medical situation. More than that, I think it's irresponsible to work for a hospital in any kind of patient-centered capacity and blast off with opinions that directly contradict hospital policies and values. Don't stand in front of a hospital poster advocating flu shots and try to convince everyone in the room they are poisonous...

I was too annoyed and too late to say anything that time, but this was not the first incident with the same person so if it happens again, I would consider it.

Alchemipedia said...

None of us really know what is right. We mostly try and make the best decision with imperfect information. The chances of making a wrong decision increase when you add imperfect information about the patient as well. I am an advocate of Hickam's dictum rather than Occam's Razor.

 
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