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. .

Share This Post

  • Sweetie

    All your histrionics won’t bring him back to life. But, I suppose it’s better to worry about the welfare of a dead man than it is to worry about a communicable disease.

  • Common Decency

    Hysterical people rarely let facts cloud their opinions.

  • Common Decency

    Do you know Brett’s family? Do you know their values? Do you know their love for him? Do you know that this particular communicable disease is not a gay disease? Do you know that patients and families have a right to privacy? Again, this information could have been disseminated without violating any privacy. I’m sickened every time I see Brett’s name flashed across the hysterical media reports, fueled by histrionic politicians and bloggers with outsized egos who think they speak for an entire community. That thinking is terribly outdated, and the two Johns would do well to come to grips with it.

  • Sweetie

    “Brett was an openly gay man, this is not about the closet or the down low.” That does not mean a family wants people to know about their gay member.

  • Sweetie

    The point is not wildly inaccurate or offensive. Many families want privacy so the public won’t find out that they have gay family members, especially those who died from a communicable disease.

  • disqus_tDOiGoj8tj

    It is now a known fact that Brett did NOT attend white party!

  • Chlorogoth

    We are talking about privacy, not “privacy”. If you think that the privacy being discussed is just closeted or DL behavior then you are completely wrong. It it the same logic that the bigots use when they say homosexuality is just about sex.

    Privacy is something important. It lets us be who we are instead of the having to stay in the persona we portray when we are judged the harshest. It lets us act in private like we wouldn’t do at a job interview, in front of our grandparents, at the family table, in front of the president, in front of our rowdy friends and our mature, stuffy friends. It lets us be vulnerable. It lets us pursue our dreams, no matter what they are. It has let girls study science instead of cooking and sewing. It has let boys cry without being physically and publically humiliated and hurt. It has let gays have relationships for centuries without being killed, losing their jobs, friends, and families, or sent to jail. Privacy is the ability to let your guard down and live. It is a fundamental American right.

    I am not arguing that knowing his name and face is important to curbing the disease or letting others know to get checked out. I am arguing your version of “privacy” is wildly inaccurate and offensive.

  • Common Decency

    Brett was an openly gay man, this is not about the closet or the down low. This is about affording one family and one man some privacy and dignity in his dying hours and not getting some arrogant self-important politician some airtime. There was a way to disseminate what the public needs to know, and that is meningitis exists, there was one case here in LA, here are the symptoms to watch for, get yourself to a healthcare provider upon presentation of those symptoms. That’s all the “many” needed to know with that urgency. How come the many never knew the names of those 20 in NYC, yet the public health information was responsibility disseminated. Even Equinox gym did a better job of informing its members through a non-hysterical missive which let people know that one of their members had been in the gym on April 6 and that member (was then) dying in hospital from meningitis.

  • Sweetie

    Ad hominem is not a rebuttal.

  • Sweetie

    The closet, the down low, and other forms of “privacy” promote disease. How is this so different? I understand the desire to be protected from harassment but sometimes the needs of the many outweigh the needs of the few. In the case of a highly deadly communicable disease, the need to know basic details is important.

  • you’re such an ass Avavosis

  • Common Decency

    What an obnoxiously smug and arrogant piece this is. First, to suggest that privacy should ever be relegated, and second to question why the family is rightfully angered at the way politics injected itself into their privacy as their loved one lay dying in a hospital. We have fought for privacy for years, and now with one, that’s ONE case in one gay Los Angeles man of this horrible infection and we demand that we own his privacy? I call B.S.

  • d3clark

    Often by the time the ventilator is needed to support a patient with meningococcal meningitis, there is only a very small chance of recovery. Sometimes, the vent is used to buy a few hours for the family to come to the understanding that the patient is terminal, sometimes to allow for distant family and friends to get there to say goodbye, etc.

  • d3clark

    Depending on how the medical information was released, it could be a HIPAA violation.

  • d3clark

    Very sorry that you both had to face that.

  • d3clark

    Call your county health dept. first. They may have the vaccine available at lower, or no, cost. And.or may have a list of PCPs/clinics/pharmacies/urgicares/etc. that have vaccine.

  • Naja pallida

    Should be able to just call the clinic and ask. Or better yet, call your GP and make an appointment and tell them exactly what you’re coming in for. They should be able to have it available for you, and should be able to quote you an uninsured cost guesstimate too. They probably won’t be able to tell you on the phone if your insurance will cover any of it or not though.

  • nicho

    Just to elaborate. Using a vent on an otherwise healthy 33-year-old with a normally curable disease is not unreasonable — and wouldn’t normally even be covered by an advance directive. If the patient were 90 years old with some serious underlying illnesses and a slim chance of survival, it might be different.

    Also, the desires you have for aggressive medical care can vary greatly depending on whether you’re sitting at your dining room table, in great health, with a glass of chardonnay, making out your advance directive — or whether you’re lying on a gurney in the ER in total panic because you can’t breathe and you’re afraid you’re going to die.

    I was once involved in a situation just like that. I helped a friend with AIDS make out his advance directive. He was quite adamant that, if the time came, he didn’t want to be intubated or put on a vent. Less than two weeks later, he was in the ER and was quite clear that he wanted the tube and the vent. People change their minds all the time.

  • I’ll say, when the time comes the world drops away and the awesome complexity of life is overwhelming.

  • Please, please get vacinated.

  • Drew2u

    well, I’ll tell you what, it is notoriously difficult to figure out what clinics offer vaccine shots for what price. Even more so if I want a Glbt-specific clinic.

  • Mike_in_the_Tundra

    This is why everyone needs a medical representative. My husband and I had discussed this a lot. When the time came, I had no problem issuing the DNI/DNR order.Then I bawled like a baby for two hours.

  • nicho

    It’s way more complex than all that.

  • Hue-Man

    This echoes last week’s conversations about end-of-life instructions – unless the doctors believe that being put on a ventilator – or other medical devices – is likely to result in you enjoying a reasonable quality of life, your instructions should make clear that you don’t want to be on a ventilator. Allowing death to proceed naturally doesn’t seem so morally complex to loved ones who are already grieving as having to order that the ventilator be turned off.

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