Following the news last Friday, April 12, that popular West Hollywood gay lawyer Brett Shaad was suddenly struck brain dead from bacterial meningitis, the gay community has essentially been begging the Los Angeles County Department of Public Health (DPH) for accurate information about how meningitis is spread and reports of any other cases in the gay community. But at a West Hollywood City news conference Friday, DPH Area Director Dr. Maxine Liggins downplayed the need for an alert and seemed to indicate that Shaad's death was an isolated case in the gay community.
"Last year in LA County, we had about 13 cases of meningococcal disease and we are currently not having an outbreak in LA County," Liggins said. Asked why the West Hollywood gay community had not been informed about the presence of the infectious disease until two days after Shaad's diagnoses, Liggins said: "We don't normally alert the public about each case of meningitis. One of the first things I said was that last year there were 13 cases of meningococcal meningitis in LA County, so we normally do not put out a public alert with each case of meningococcal meningitis."
But at a Tuesday, April 16, news conference, AIDS Healthcare Foundation President Michael Weinstein, West Hollywood City Councilmember John Duran and 26 year old Casey Hayden announced the death from meningococcal meningitis of Hayden's boyfriend Rjay Spoon (seen together in this photo from Facebook) last Dec. 18, raising questions about what appears to be the insensitive and virtually cavalier attitude with which DPH shares information.
Tuesday night, after LA Gay & Lesbian Center medical professionals pressed DPH Director Dr. Jonathan Fielding for clarity, Jim Key, the Center's Chief Public Affairs Officer, issued this statement:
We've recently learned from the L.A. County Department of Public Health that L.A. has an average of 25 cases of meningococcal meningitis every year. In 2012 there were 12 cases. So far, in 2013, there have been nine cases. Only since last November has the department tracked cases among gay/bi men. Since beginning that tracking they have identified 4 cases among gay/bi men in L.A. County, two of which resulted in death. (Emphasis mine)
Two of the cases were reported on Dec. 18, one on Jan 9 and the most recent was the death that occurred on April 13 [Brett Shaad]. DPH tells us they have not been able to establish a connection among any of them.
At the Tuesday news conference, both Duran and Weinstein pointed out that a quick response to an outbreak of bacterial meningitis in Toronto in 2001 and Chicago in 2003 resulted in a quick end to the outbreak. They said that foot-dragging by the health department in New York City, however, resulted in seven perhaps preventable deaths since 2010.
Duran expressed his frustration with DPH. "Why aren't we being told everything? It's really hard for me to alert a community that's 40 percent gay that we have a problem in our midst if I can't get straight answers from County Public Health."
Duran said he'd spoken with public health officials about Spoon's death, asking, "What's going on?" The response was, "John, we don't understand why you're upset. I mean there have been other men-who-have-sex-with-men who have come down with meningitis." To which, Duran replied: "When were you going to tell me that? I was just with you Friday. I just met with you downtown Monday. You had two opportunities to say, 'There are other cases.' Because now, the more information that gets slowly leaked to me in tidbits brings us closer to resembling the scenario in New York City....To me, it seems the information is not being freely shared and the responsibility for public health is with the County, not with my city, not with this non-profit. So why isn't the response more forthcoming?"
Duran also indicated that DPH had told him what they told the Center, "that they have four men-who-have-sex-with men cases - two with fatality. So if these are the two - and they have two that survived, that's four cases. And I want to know are they linked together." But Duran said he was not clear on what the numbers meant, since the gay cases seemed disproportionate to the number of total meningitis cases. He also said DPH was going to tell him either Friday or next Monday if the Shaad case was linked to New York.
AHF President Michael Weinstein - who noted that AHF had provided 1,000 free vaccines on Monday - said there was an indication of two more cases in San Diego. Weinstein told reporters:
"We came before you a couple of days ago to say we're here to raise an alert and not an alarm. That's still the case because we do not know the extent of this and whether this should be characterized as an outbreak. But what is really alarming - we cannot do the job of the Public Health Department - whether that's the CDC, the state or the County Public Health Department - the fact that the officials knew of this other case here in Los Angeles [Rjay Spoon] and one or two more in San Diego and said nothing is very, very concerning....
We're calling today for Los Angeles County to immediately get behind this vaccination effort. We're wondering how many more illnesses or deaths there needs to be before they're going to get off their hands. The reality is if we have three deaths [two in LA, one in San Diego] - then there must be many more cases, because this disease is only deadly in about one in six cases. So we're wondering how many more cases the County is aware of that it is not reporting on."
Weinstein noted that in 2001, in Toronto, "2 out of 6 gay men died of meningitis and Toronto did 3,850 vaccines. In 2003, in Chicago, 3 in 6 infected gay men died from the disease and they did 14,267 vaccines. So I think we're past that threshold now and there is really no excuse for inaction at this point."
Weinstein also pointed out that neither AHF nor the City of West Hollywood is in a position to say if the known cases of gay men contracting bacterial meningitis is an outbreak because they don't know if the cases are related or are related to the cases in New York. "Officially an outbreak is three cases that are related," he said. "It's not our job to determine these things. This is what a public health department is supposed to be doing." Additionally, DPH should have established or ruled out a pattern among the 13 cases that the county reported on by now. "And they should know if the case of Mr. Spoon is tied to the New York epidemic. They should have done a serology on that to know if that's actually part of that strain."
Duran also asked:
"At what point are we going to get some cooperation with the County Department of Public Health to get the massive education out there that we're all doing right now?....I think we need to move forward as aggressively as they did in Chicago so that we do not end up following in the footsteps of New York City and wait until we have six or seven deaths on our hands. We're going to keep pushing vaccinations."
Dr. Parveen Kaur, an infectious disease physician with AHF, said she found news of Spoon's death and the death in San Diego to be "very, very concerning." But she also pointed out that while it is logical to look at the possibility of the LA strain being the same as or similar to the meningitis strain in New York City because of travel, "we could be having our own outbreak" in LA or in the south western environs with the incidences of meningitis among school children in Orange County and Tijuana, Mexico.
Duran said DPH told him they should know if there is a connection between the strain of meningitis infection that caused Shaad's death and the New York City strain by Friday or next Monday.
At Monday night's City Council meeting, Duran asked City Manager Paul Arevalo to distribute $25,000 in discretionary funds to non-profits to buy the vaccine and provide them free of charge to anyone who requests one. As of Tuesday afternoon, however, West Hollywood Social Services Manager Daphne Dennis said she has not yet received instructions to disperse any funds.
Without insurance, a booster shot costs between $125 - $200. A person with HIV requires two shots. On Monday, the LA Gay & Lesbian Center gave out 50 shots and will give out more by appointment henceforth, though the Center, too, wants the County to assume the financial burden. AHF gave out 1,000 vaccines on Monday and 700 on Tuesday. Weinstein told reporters that AHF buys the vaccine for $105 a dose and has spent roughly $400,000 to purchase 3,500 doses.
But aside from the shocking awareness that DPH withheld information from an elected official and public health advocates is the story of what happened to Rjay Spoon and Casey Hayden.
Hayden said he and Spoon had been partners for three years. Hayden told reporters:
[Rjay's] sickness started very suddenly on Friday, [Dec.] 14th. Late in the evening - he called me at midnight - and said he had started throwing up and by Saturday night, he was unresponsive on his phone and Sunday morning he had passed away. It was so fast...It was only after the fact that we were made aware of the meningitis situation in New York City. And two days after he passed away was when the CDC concluded that it was actually meningococcal meningitis. So I was brought in to the health department and inoculated. I had questions that were not answered but they said it was such a rare case, they hadn't had a lot of information on it....
The biggest thing was nobody seemed to know where he could have gotten infected and granted it's a small, rare disease, but they basically said nothing when I asked how a person could get infected. The way that they said was really close contact or very general like someone could have sneezed and walked by him and he could have been breathing in. And another person I talked to said, 'No, it has to be through saliva contact or sharing a drink or something.' I asked if there were any other cases in LA County and they said there were several but if I wanted to find out about that, they were in the public health record and I could look it up, which I didn't do.
One of the questions the health department asked in their interview was if we had visited New York in the past three months, if we had anyone fly in from New York - any sort of contact and the answer was no.
They didn't test me for it. They gave me prophylaxis - anyone who had been in contact with him since he was symptomatic was brought in and given prophylaxis. I didn't have anything done. They did say he would have only been extremely contagious when he became symptomatic. And from the time he started showing symptoms to the time I found him, I didn't have much contact with him. But getting him from his apartment to the hospital, I was there so there was a high risk of me being infected. But the only way to test for meningitis is, of course, a spinal tap and until you're symptomatic, they're not willing to risk doing that.
One of the things I want to work most after this is the fact that there was just no knowledge, it seems like, from everybody around me when I was going through this with Rjay. I got him to the hospital and the first thing that they said it was a drug overdose. And they criticized our relationship. And then they said it was extremely advanced HIV which was not the case - he was negative.
And the kind of experience that I had with going through all these different emotions of everyone saying he was going to be OK and then not knowing what was wrong and putting him into this drug-induced coma and even after he passed, no one having an explanation. And for the 30 hours before hand, both of us just thinking that he had food poisoning - there was no awareness. And there is no awareness of meningitis in young people. And if that can help people be aware of the symptoms and aware of what's going on, not just in our community but any community, that's worth it.
Though Hayden did not mention it at the news conference, he posted in his Facebook page that the public health officials had asked him to reach out to his and Rjay's friends to find out how he'd been exposed and to help with contract tracing.
What kind of conclusions can one draw from this ripping back the curtain and exposing an LA County Public Health Department that seems so out of touch with its own mission to communicate and work with the communities it's supposed to serve? After all, DPH sent someone to a news conference who appeared arrogant, insensitive to the fears of the legendary touchy-feely gay community who also gave out inaccurate information - even though meningitis is spread through close contact and saliva.
DPH seems to be following a protocol that looks at numbers and not lives. How can the gay community protect itself if the public health department does not issue at least an alert - as the City of West Hollywood did - saying there is an illness in their midst and the community should take precautions. Why remain silent until a massive campaign is called for when an alert could potentially prevented a potential crisis? After all, the County issues press releases advising different areas when animal control is coming out to investigate whether dogs have licenses and have been vaccinated for rabies. Isn't one death enough to alert the effected public - even if it is only an isolated incident?
DPH does not seem to care or have grasped that this infection is occurring in a community with a legacy of government mistrust after homophobic ignorance and disdain let loose the HIV/AIDS pandemic 30 years ago.
DPH is apparently ignorant of the US Department of Health and Human Services' call to integrate LGBT health issues into all data collection. On March 25, for LGBT Health Awareness Week, HHS released this statement from Sec. Kathleen Sebelius:
"LGBT Americans have experienced - and continue to experience - health disparities and are more likely than other Americans to be uninsured or underinsured. Now, because of the Affordable Care Act, our major national health surveys are beginning to include data on LGBT populations. This will give us the information we need to target and reduce disparities among this group going forward. We have also formed an internal working group to ensure we're developing and coordinating policies targeted at increasing access to care for LGBT Americans and addressing their special health care needs."
Or how about Seblius' statement exactly one year before, on March 26, 2012:
Studies have shown that health disparities related to sexual orientation and gender identity are due in part to lower rates of health coverage and a lack of cultural competency in the health care system.....[T]he Department of Health and Human Services continues to address the specific health concerns of LGBT Americans, including by working to incorporate data collection on LGBT populations into national health surveys, releasing rules requiring hospitals to allow same-sex partners the ability to visit each other in the hospital, and setting up an internal working group that ensures we are effectively coordinating policies to best address LGBT health needs across every agency in the Department.
Here's an alert to Public Health officials: Gay men are not solely about HIV, lesbians are not solely about breast cancer and heart disease and transgender people are not all about transitioning. As human beings, LGBT people experience the same health issues as straight people. But as LGBT people, we also experience unique health issues and disparities because of ignorance and homophobia and benign neglect such as displayed in this instance. If DPH wants to serve the public as the mandate requires - how about hiring some LGBT people in positions of power and visibility? And frankly, that goes for the Board of Supervisors, too. Where are the LGBT people who serve as deputies and advise the supervisors as Rich Llewellyn advised Supervisor Ed Edelman in the beginning of the AIDS crisis to ensure what could appear as moral malpractice doesn't occur?
It is shocking for Los Angeles in 2013 that the LGBT community has to beg the LA County Department of Public Health to stop acting like such an out of touch dictator and pay attention to and work more closely with the communities it's supposed to serve. It is also shocking in LA in 2013 that the county government's health department appears to be culturally incompetent.
(Photos of the AHF news conference courtesy AHF.)