Karen Ocamb

The LA Meningitis Mess Reveals Critical Need for Cultural Competency

Filed By Karen Ocamb | April 29, 2013 4:00 PM | comments

Filed in: Living
Tags: cultural competency, LGBT health issues, Los Angeles health department, meningitis, meningitis outbreak, public heath issue

(Author's note: A version of this commentary will appear in Frontiers magazine. This is an opinion piece in order to highlight a number of points that I think are important, especially in advance of how healthcare will change under ObamaCare in January. If cultural competency and collecting LGBT data don't become standard operating procedure - not just administration policy - we face more alarms and distrust, which can only lead to more health disparities.)

Thumbnail image for fielding-meningitis.jpgIt looks like Meningitis Hell Week in West Hollywood may be over. On Friday, April 12, news emerged that popular gay attorney Brett Shaad had gone quickly from "fit" to brain dead as a result of contagious bacterial meningitis. On Friday, April 19, the Los Angeles County Department of Public Health posted a notice on its website that they had "not identified any other cases of meningococcal disease associated with this patient, nor identified any linkage between this patient and cases being reported in other areas of the country," such as New York City.

But while the L.A. gay community might feel some relief after a week of intense fear and anxiety, the mess created by mistrust and misunderstandings exposed the dire need for cultural competency in how public health departments deal with LGBT populations. Indeed, had Public Health been culturally aware and forthcoming from the beginning, this mess might not have happened.

Just as some African-Americans still distrust government health officials 80-plus years after the Tuskegee syphilis experiment, some gays believe L.A. Public Health initially had no concept of how withholding information about a contagious disease is a 'legacy' issue for gays who are still deeply unsettled remembering the neglect of government when the AIDS crisis began 30 years ago.

At his April 12 news conference, West Hollywood City Councilmember John Duran, who is HIV-positive, said he wanted to make sure history didn't repeat itself. But unlike the beginning of HIV/AIDS, meningococcal meningitis is a known disease that is preventable, and curable if caught in time. Outbreaks in Toronto and Chicago had been quickly quelled with a vaccination campaign, while in New York City, health officials declared an outbreak after two years, 22 infections and seven deaths of gay men.

The death of one gay man who was thought to have attended the White Party and had gone to Equinox Gym after returning home was sufficient information for the city of West Hollywood to issue a strong health warning to residents about how the disease is spread and what symptoms require immediate attention. Additionally, since the White Party draws 10,000 gay men from around the world, Duran's news conference expanded the health alert and enabled L.A. Gay & Lesbian Center medical professionals and Public Health to provide information on how the disease is spread through nasal mucus and throat secretions (saliva), such as through kissing, sneezing, coughing and sharing utensils and cigarettes.

But as Public Health's Dr. Maxine Liggins acknowledged, without the news conference and the WeHo alert, the LGBT community would not have been told about the disease unless Public Health determined there was an outbreak, which there is not. "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 case of meningococcal meningitis in LA County so we normally do not put out a public alert with each case of meningococcal meningitis," she said.

While Liggins said the case was being investigated, she did not correct the information that "the case" (Shaad) attended the White Party, a point hotly refuted by Shaad's family that subsequently caused confusion and anger within the gay community. In his report to the Board of Supervisors on April 17, Public Health Director Jonathan Fielding wrote that they found out about Shaad on April 9 and immediately launched an investigation and provided antibiotics to people with whom Shaad had come into close contact. On April 11, Liggins sent a letter to Equinox asking them to alert their staff and patrons about Shaad, without naming him. Fielding wrote:

Additionally, DPH assessed all reported locations where the patient may have visited during the incubation period to identify any additional contacts that needed preventative antibiotic treatment. DPH was informed that the case visited a gym in the West Hollywood area on the day he felt sick. On learning of the case's visit to the gym, DPH provided a letter to gym patrons notifying them that a client associated with the gym had been diagnosed with meningococcal disease. The gym notification included instructions on if and when gym patrons should contact their medical provider. Contact information for DPH staff was also provided. (Emphasis mine)

In her letter to Equinox, Liggins writes: "Public Health does not believe that exposure in the gym setting poses risk to other patrons." This sets off an alarm with me because it seems to refer to how straight patrons use gym equipment, without an understanding of how gay guys like to get sweaty and hug and kiss each other. Public Health then makes it the gym's responsibility to alert any patron who might have been exposed to the deadly contagious disease - without providing a time frame when that contact might have happened. Additionally, how would the gym management know with whom Shaad came into contact or if that person(s) might return to the gym in time to see the letter?

By Duran and the Center holding that press conference on April 12, those gym patrons who might not have heard the news had a chance to get treatment.

Without an outbreak, Public Health said there was no need for a mass vaccination campaign, forcing The Center and AIDS Healthcare Foundation to step up and provide free vaccines out of their own pockets. AHF reports that from April 15 to April 20, they provided 3,357 free vaccines to gays who felt they might be at risk. Because of the pressure from the LGBT community, Public Health agreed to provide vaccines for low income and uninsured residents of LA County at five clinic sites. Fielding told me:

Fielding: We are paying for vaccines for the uninsured, Department of Health Services, our sister organization, has the safety-net responsibility, if you will, to pay if somebody doesn't have insurance or somebody is low income. They can also go into to one of the comp centers and get immunized. It'll take some time to go through the process. There's screening and stuff. But they will do that. So those groups will be covered and Ryan White also in the providers we contract with are also covered. For the private insurers, we understand that some will - we heard of two just recently that would - but I haven't validated that. And there are others that we want to talk to make sure that they will. And that's where we need the strength of the gay community, plus Public Health, to make sure that's not a barrier.

KO: So we're going to put pressure on you so you can put pressure on them to make it happen.

Fielding: No, you don't have to put any pressure on me. I think people should have the right to do this. I think there was a false dichotomy that said, 'Well, Public Health doesn't want people immunized.' Well, that wasn't true at all. What we said was that we didn't have the criteria for a routine immunization campaign, to say everybody should be immunized. That's different from saying, 'People who want to be immunized should not be immunized.' Of course they should.

But it was the revelation that Public Health only started asking about sexual orientation last November, after reading a New York City report to the CDC, that really stirred up a hornet's nest of distrust. They discovered that two gay men in L.A. County had been infected in December and another in January, with one of those three men dying. Though Public Health knew that, the information was only made public after Casey Hayden, the partner of deceased Rjay Spoon, contacted Duran and told him of Spoon's death in December. Duran and AHF held another news conference denouncing Public Health for withholding information: "How many more cases are there?"

After Fielding held a news conference on April 17 (hear audio of the news conference here) to clear up the confusion, Fox 11's Christina Gonzalez virtually thanked AHF for breaking the news, which she said the public wouldn't otherwise have known about. The KCBS reporter seemed to stress that Fielding was holding the news conference primarily to calm the anxiety of the gay community.

In an interesting exchange after the news conference, Fielding was trying to explain to Gonzalez how bacterial meningitis may be contagious but it wasn't that contagious. "If you're standing this close," Fielding said, getting face to face with the Fox reporter, "then, yes, you can get it," presumably through unintended spittle. "But if you're standing this far back, you can't."

"But, Dr. Fielding," I said, putting my face up close to his, "the gay community gets this close to one another all the time. It's part of our nature, part of our natural 'behavior' - we're touchy-feely people."

"I agree with you," Fielding said. "That's why we believe MSMs (men who have sex with men) are at higher risk. But again, it's not everybody in the gay community assessing it in the same way. And I don't want people to think this is a gay disease. I don't want it to be stigmatized."

And herein lies another cultural misunderstanding. In his report to the Board of Supervisors, Fielding says that after the New York report to the CDC, the DPH "began requesting public health nurses to obtain additional risk factor information regarding sexual practices (specifically for MSM), to determine online dating practices, travel history to NYC and attendance at specific bars and parties." Asking about sexual practices probably refers to the fact that New York initially investigated meningitis among sexually active HIV positive men in certain New York neighborhoods. However, as NBC News reported on April 24:

The New York City outbreak has been linked to parties, online websites or apps that men used to find other men for "close or intimate sexual contact," according to health officials. But for more than half of the men sickened by meningitis, there was no evidence that the men had used any of these means to encounter other men, according to public health officials.....

At first, the meningitis outbreak in New York City seemed to infect only HIV positive men, but by March half of the men sickened were HIV negative. Three of the last five men sickened have died.

It is unclear why the current outbreak, so far, is affecting only gay men. Only two of the men knew each other and there is no evidence they infected each other, said [Dr. Jay] Varma [the New York City Deputy Commissioner for Disease Control in the Department of Health and Mental Hygiene].

Cultural competence would note that being gay is an identity, an orientation, not just a sexual practice, especially one always associated with HIV and STDs. Fielding indicated to me that he understands that - and yet the investigators appear to look only at gay sex. And while that isn't a bad thing, as Seinfeld might say, it's not the only thing. Besides, there are as many giggles about going to the White Party as straights get going to Mardi Gras.

LA Times reporter Ari Bloomekatz held a 'live' online chat about the Fielding news conference and said, "L.A. County averages about 25 meningitis cases a year. My understanding is that 15 to 20 percent are generally fatal. According to Dr. Fielding from the DPH, the cases are generally rare and sporadic, not really centered anywhere. The concern would be if officials could point to a particular geography and say 'we see it spreading here' ... but they say they can't do that because the evidence doesn't show that, at least not yet. ... But whether the county is being proactive enough or has been proactive enough surrounding this issue has come into question. ... Sometimes just getting those folks on the phone can be enough to frustrate even the nicest of Southern gentlemen."

Bloomekatz's explanation underscores several reasons why cultural competence is needed. Apart from West Hollywood and Silver Lake, the LGBT community is not really centrally located. Public officials look for the spread of meningitis in clusters where people have had close, intimate contact--in neighborhoods, dorms or military barracks, for instance. But LGBT people come from all over the place to cluster in gatherings such as the White Party or gay Pride events. And then they return home, where they may be closeted. Without understanding that dynamic and without specific training in cultural competency for health investigators, the results of an epidemiological investigation may be off or misleading.

Additionally, if a specific population seems to get the disease out of proportion to their numbers in the general population, shouldn't Public Health want to proactively prevent more infections? Fielding told me the department only goes public when their information is fully accurate and reliable. But surely there is a middle ground between silence and a mass vaccination campaign-- perhaps something akin to the alert issued by the city of West Hollywood. Or perhaps making public a version of the letter Liggins sent to Equinox?

I pressed Fielding about the issue of putting out a public alert--not to cause panic but just to inform people about what was going on and how they could protect themselves. I told him that some people didn't understand why Public Health didn't grasp the legacy of AIDS and were upset.

KO: (After Fielding said MSM are at higher risk). Yes, but there's also alerting people within the gay community that this is an issue. And that's why I'm confused about why there wasn't some sort of an alert of any sort - just even a press release. The county puts press releases out warning people about all sorts of stuff. (Suggesting they could say) 'Don't panic - we just want to let you know...These are the symptoms, this is how you can be contagious.' That's all the city of West Hollywood did.

Fielding: This is all relatively new information. Remember we didn't start looking at this until last November. We've just been looking at the pattern - we haven't had a large number of people.

KO: That you know of. Last March 25, HHS Sec. Seibilus put out a statement for LGBT Health Week saying that she was telling her all agencies to start collecting LGBT data. That's across the whole spectrum, not just HIV.

Fielding: We fully concur. I was of the group that helped develop the 20/20 Health Objectives and one of the things we said was that it was essential to develop LGBT information wherever it was available and to make sure it was available in more places. Because in so many cases, like this, it hadn't been collected.

KO: So why wasn't it collected then prior to Nov. 1?

Fielding: Because we didn't realize that this particular disease was more common in MSMs until New York provided their information, which was relatively late last year.

KO: Right, but if the question is automatically included in all spectrums of disease...

Fielding: This was a detailed protocol that we asked people for contacts. And it just did not occur to my staff to put that in there until the New York report....

KO: But for us - given that we are susceptible simply because of how we 'behave' - and that's not a discriminatory thing, it's just we love to hug and kiss each other - and therefore we're more likely to contract it because of our very nature. So as soon as you have one thing - that it could be contracted this way - to just put out a press release. It doesn't have to be high alert. Just a press release that this is happening.

Fielding: I'm a little concerned about putting out press releases when we have such limited data but I think your point's well taken. I'm trying, on one hand, not to shoot the gun prematurely on information because people rely on us for accurate information. Some of that means we need to look carefully. But I understand your point of view, believe me.

KO: So - keeping in mind cultural competence.

Fielding: I will keep it in mind....Perhaps we should have put something out earlier. I don't know. I have to go back and think about what we knew and when we knew it and the like. But we always want to be sensitive to the LGBT community. We try very hard to do that."

Noting that many LGBT people were upset and distrustful because of the mess, Fielding apologized. "Well, I'm sorry. I'm really sorry for that," he said.

AHF President Michael Weinstein isn't buying any of that. He's angry, believing that Public Health and the Board of Supervisors don't "get" the LGBT community. "Fielding's statements smack of the same insensitivity we have seen all along. Gays are too dumb or hysterical to handle the truth," Weinstein told me. "Fielding considers five months to be too early in a situation to draw any conclusion. If we were dealing with a mass easily communicable airborne disease we could all be dead before Public Health took any action."

Dr. Robert Bolan, Medical Director at the L.A. Gay & Lesbian Center, wants to move forward and focus on the issues of cultural competency and LGBT data collection. "What appears to be the case here is that none of these cases are specifically linked to one another--so that kind of calms us down about an epidemic spread," Bolan said in an extensive interview.

But another question remains: "Is there really an increased number of cases of meningococcal disease among gay and bisexual men out of proportion to our representation in the general population? My answer is that we don't know right now."

Bolan applauded Public Health for jumping on the issue after finding out about it in October. "I think our health department began asking the question within a reasonable amount of time from when it became known to them," Bolan said. "But have any other health departments been doing the same thing?"

Bolan has called on the CDC to begin collecting LGBT data immediately--including information from transgender individuals--so they can do cultural competency training of local health departments.

"When it comes to transmissible infections," Bolan said, "it seems to be reasonable to ask whether people are gay and bisexual, because there may be things about our behavior as LGBT individuals that might put us at greater risk for becoming exposed to various infectious agents--not necessarily sexual behaviors" but other behaviors such as the penchant for kissing and touching each other intimately, which in the context of bacterial meningitis, makes gays more at risk.

"We may tend to be closer to one another for a variety of reasons [with] more showing of affection than the general population for whatever reason, whether it's our history or our eagerness to show affection and warmth to one another and our sense of community," Bolan said.

This information "may be epidemiologically important," Bolan said. "The key thing is we need to call for culturally competent epidemiological investigations. ... If we find through this national epidemiological culturally competent understanding that our community is disproportionally affected, then the consequence of that will be that the vaccine recommendation should be changed to include vaccination for LGBT individuals--even if there isn't an outbreak or an epidemic."

The reaction to the tragic deaths of Brett Shaad and Rjay Spoon caused alarm in the gay community - an alarm that I think could have been prevented. But that alarm also ignited a firestorm of questions about what public health departments are doing to practice cultural competence - questions that may eventually save LGBT lives if acted upon by HHS, the CDC and local public health departments.

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