Privacy & the public interest over Meningitis in the age of AIDS

Brett Shaad, a 33 year old gay West Hollywood man, died on Saturday of bacterial meningitis.

The news of Shaad’s death comes as concern is growing nationwide about meningitis, due to a particularly deadly outbreak that has taken a foothold among gay men in certain neighborhoods of New York City over the past three years.

Meningitis is known to strike discreet communities, be it college students living in the same dorm, inmates living in the same prison, or in this case, gay men living in the same neighborhood.

What makes this outbreak of meningitis particularly troubling is its persistence, usually the outbreaks come and then go relatively quickly, and the increased rate at which this strain kills.  Normally, 1 in 5 who get meningitis die – but with this strain, the mortality rate is 1 in 3.  I had a long discussion with a CDC official about this particular strain of meningitis, and whether people outside of NYC should get vaccinated, if you’d like to explore the issue further.

What I want to discuss today is privacy and the public interest.

Brett Shaad’s family issued an angry statement about respecting their privacy this weekend after the media had incorrectly reported that he had been removed from life support, and died, Friday afternoon.  In fact, Shaad was brain dead as of Friday, but the family did not disconnect him from life support until Saturday – he died twenty minutes later.

Here is a statement from a family representative following the misreporting of Shaad’s death:

“The Shaad family asks for privacy at this painful time, which has been made more devastating by irresponsible and inaccurate reports on the circumstances of Brett’s death. The family wants, and will pursue, answers for how and why this happened.”

Really?  Your son and brother is dead and you’re going to pursue an investigation into how his death – and possibly even his name – was leaked, possibly in error?  Why?  I suppose I understand the family’s generalized anger, but I also understand the confusion that arises surrounding the death of a loved one on life support.

I’ve been there with my own family members, making the decision about the removal of life support, and one thing that’s unexpectedly confusing is what to tell relatives about whether the person has died or not.  Once you make the decision to remove the ventilator, in your mind – in ours at least – the person has already died.  We even had some confusion with relatives who didn’t understand why there were conflicting reports about whether the family member was dead or alive.  So I get why things got confusing about Bret Shaad’s death – the definition of death is no longer as clear cut as it was for our grandparents’ generation.

Privacy via Shutterstock

Privacy via Shutterstock

But putting that aside, I couldn’t help feeling that Brett Shaad’s family’s concerns about “privacy” weren’t about something more.  I talked to friends about this, and all of us agreed that, in covering this story, we’re all having an increasing feeling of deja vu vis-a-vis the early days of AIDS.  This isn’t AIDS – it’s much harder to spread than HIV, for starters.  But some of the reaction we’re sensing – from community members upset that this might come across as a “gay disease,” for instance – does ring a bell.

Also, in addition to the Shaad family, the organizer of the White Party, which Shaad reportedly attended a week before he got sick, issued a statement that struck me as somewhat defensive.  Let me quote it in full:

“We all need to put this into perspective. The World Health Organization list scores of communicable diseases such as tuberculosis, the Ebola virus, SARS and so many more.  There has never been a case of meningitis  reported at the WPPS.  From what we all know to date, the origin of this case is inconclusive; nonetheless like many large gatherings  gay or straight,  people are often in close intimate contact with each other.

Therefore, we make the safety and security of our guests  the top priority every year. And we have always been very proactive in distributing literature for the health of our patrons so everyone can be educated and informed.

I personally know Brett, a wonderful man and a beacon of sunshine. Of course my heart goes out to the parents and siblings as we have always regarded all our party participants as extended family.  Politicians  also have a responsibility to know the facts before creating panic in the community. And before speaking out and drawing theoretically conclusions, they should take note of the statement made by Brett’s brother Brian Shaad as reported in other media:  ‘Shaad’s brother Brian Shaad criticized some of Duran’s statements as inaccurate. “Brett remains on life support in the hospital. No conclusions have been drawn regarding when, or how, he may have contracted meningitis. We ask for privacy during this incredibly painful period,” he said in a statement sent by email early Saturday’

Hmm.

Understandably, the man has a business to run and protect – his big gay dance parties – and it’s not good for business if people start thinking you might die if you attend.  We all get that. But, it’s not an insignificant fact that Shaad attended a party, during which no one would be shocked had he made out with someone (among other possible modes of transmission), a week before he got sick from a particularly-deadly variant of a disease that seems to be striking gay men who go to parties, and that can, in rare instances, incubate for up to two weeks.

Had I made out with Brett at that party, or in the week before he fell ill, I’m not sure his, or his family’s, privacy – or the longterm viability of a dance party – would be my primary concern.

And that’s why it’s important that Brett Shaad’s name be public.  I know it bothers the family.  But we’re talking about a death that might be related to a larger disease outbreak, and it’s understandable why people who interacted with the man during the days in which he was infected might be interested in seeking medical help.  Karen Ocamb makes this point as well:

The gay community has struggled with this issue before during the AIDS crisis – when the family of origin demanded medical privacy for their sick gay son and the family of choice wanted to know so we could be at the bedside or send well wishes and prayer for our loved one in the hospital.  It’s sometimes difficult for the family of origin to realize that the family of choice is devastated, too, and being shut out or shut up or dismissed exacerbates that anguish.

Fifth, though Public Health says they are investigating and reaching out to and treating those with whom Brett might have come into contact – the White Party was from March 29-March 31 and there were a lot of folks with whom Brett might have come into contact between then and April 10 when he went to Cedars. How would they know to get checked if Brett’s face and name were not made public?

And while I didn’t know Brett, if he really was the good guy people say he was, does anyone really believe he wouldn’t want to help others he might possibly have infected?

Finally, some are annoyed that this is being portrayed as a “gay disease.”  They worry first about the stigma generally, and second about the religious right using the disease against us.

First the stigma.  This is a disease that historically hits discreet communities and stays in those communities, be they college students in the same dorm or inmates in the same prison.  This time around, the disease keeps striking gay men in certain NYC boroughs who seem to fit a certain pattern.  In that case, you warn people who fit the same pattern, period.

As for the religious right, I thought about that before writing about this for the very first time. But I concluded that it’s more important to save lives than to worry about whether some anti-gay bigot is going to use this to bash us.

The haters would like nothing better than for their opportunism surrounding this disease to lead us to flinch, not go as public as we might have gone, and as a result, more gay lives are lost.

In the end, the bigots are going to hate us, and bash us, and lie about us no matter what we do.  So we might as well live. I can’t think of a more delicious way to tick them off.


Follow me on Twitter: @aravosis | @americablog | @americabloggay | Facebook | Instagram | Google+ | LinkedIn. John Aravosis is the Executive Editor of AMERICAblog, which he founded in 2004. He has a joint law degree (JD) and masters in Foreign Service from Georgetown; and has worked in the US Senate, World Bank, Children's Defense Fund, the United Nations Development Programme, and as a stringer for the Economist. He is a frequent TV pundit, having appeared on the O'Reilly Factor, Hardball, World News Tonight, Nightline, AM Joy & Reliable Sources, among others. John lives in Washington, DC. .

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