Sunday, July 19, 2009

Why the difference between HIV and H1N1? Exceptionalism?

The coincidence of the reports on our first H1N1 related death and the guy who came out with respect to his HIV, gave me cause to think about how the world treats these two pandemics.

It is becoming increasingly clear that the mortality related to H1N1 is nowhere as high as was initially estimated. A recent article in Eurosurveillance by two New Zealand public heath experts reviewed the methods for estimating the case fatality ratios (CFRs) for the H1N1 flu and concluded that the current methods overestimated the CFRs. They present possible alternative methods, which despite their limitations, all produce much lower CFRs (0.06% - 0.0004%) compared to the original estimates of 0.4%.

By contrast also, the HIV CFR has an almost surreal air to it. Nobody talks about HIV related deaths in the same way as for H1N1. For example, a heart attack patient with positive H1N1 would be an H1N1 related death, but an HIV patient dying of a heart attack would not be a HIV related death. Even so, the very crude estimates of HIV CFR is in a totally different ball park from H1N1. In 2007 WHO reported a global incidence of 33 million cases of HIV. Over the same period 2 million AIDS deaths were reported. This allows us to make a very rough estimate that HIV related deaths could be at least 6%, 10 x the worst estimated CFR for H1N1.

Yet we run around panic stricken, whacking at the H1N1 flu with fancy words like containment, mitigation - quarantines, contact tracing etc etc.....while treating HIV almost with kid gloves.

The word that epidemiologists use for this is - 'exceptionalism'.

HIV is probably one of the most destructive pandemics in human history. Since 1981 when it was first discovered it has been estimated to have killed 25 million world wide. Yet we are afraid to manage it in the same scientifically rational way we manage all other epidemics. Activists and lobbyists have managed to persuade the global community that to do otherwise is a human rights offense.

So we have been powerless to deal with this pandemic in the correct way.

But things seem to be swinging away from that falsehood as people come to terms with the destructive nature of the pandemic. In 2007, the US CDC and and WHO/UNAIDS finally got the courage to recommend that testing for HIV be part of routine clinical testing. This is 26 years too late if you ask me.....but at least it is now being done.

Singapore followed suit with Changi General Hospital taking the lead. Senior Minister of State Ministry of Foreign Affairs, Dr Balaji, reported (Nov 2008), "... Changi General Hospital was the first hospital in Singapore to pilot voluntary opt-out HIV screening for inpatients just under a year ago. They have shown that it can be done. More than 3,000 of their patients have been screened so far, and around 50 have been found to be HIV-positive. The Ministry of Health has asked other acute hospitals to implement a similar opt-out HIV screening programme for their adult inpatients, and it should be in place in all public sector hospitals by the end of the year. Private hospitals should also study how they can implement opt out testing as this becomes the standard of care."

Let's do away with exceptionalism once and for all, and deal with a pandemic the way pandemics ought to be dealt with. Scientifically, rationally and truthfully.

Read "Changing the Paradigm for HIV Testing — The End of Exceptionalism" in the New England Journal of Medicine.

12 comments:

Paul Ananth said...

I totally agree with doing away with HIV exceptionalism.

We should ban insurance companies from discriminating against people with HIV disease, ban employers from discriminating against people with HIV disease, provide subsidies for HIV drugs on the WHO Essential Drugs list like we do for all the other agents on the WHO list with the exception of antiretrovirals.

Excellent idea. Strongly supported

gigamole said...

The main problem I believe, arose when we capitulated to activist groups and got side tracked into managing HIV not as a pandemic but as a "lifestyle disease". We are still paying the price for this as the infection spreads beyond the 'lifestyle'.

The downside that the lifestyle lobbyists brought upon themselves and society at large is that if it continues to be regarded as a lifestyle disease, it weakens the arguments for these antivirals to be essential drugs.

Prochoice?

Paul Ananth said...

First time I have heard MOH described as "Activist group"

They were the ones who decided on the policies for drug subsidies, no action on insurance companies or employers who singled out HIV etc To be fair to them, these decisions were I am sure at least partly affected by pressure from conservative groups

The NGOs in Singapore have unfortunately been quite passive in this! In the US, groups such as ACT-UP succeeded in revolutionising the FDA including the widespread acceptance of surrogate markers as end points of clinical trials. This might not necessarily be good all the time but it has allowed a whole host of new drugs for other diseases such as hypertension, heart failure etc to reach the market. Such "activism" is often not recognised by people on these new agents!

gigamole said...

I wasn't thinking about MOH as an activist group...rather that MOH was kinda managing the situation, as did most agencies round the world, with an eye on the vocal activism around human rights abuse accusations from gay activist groups.

I'm not so sure I would ago along with your rather upbeat views of ACT-UP.

While it is true that their vocal and desperate championing of the antiretrovirals turned out well, I am not sure sure that the too much loosening of of regulatory approval process would ultimately be uniformly beneficial to the public.

Coming back to the HIV story, wouldn't you agree that too much human rights hysteria has no place in the management of pandemics? I didn't see ACT-UP act up when H1N1 people were being quarantined and contact tracing was being done.
:)

Mr Neutral said...

It's very hard to reach out to the homosexual population if we don't strike down S377A. You cannot tell two gay men to please remember to put on their condoms before they have anal sex because that would seem like you're abetting a criminal act. So S377A must go.

gigamole said...

maybe we just tell them not to do it...that'll work just as well.

Paul Ananth said...

I agree that too much hysteria - either from regulatory agencies or human rights groups has NO place in the management of a pandemic.

In this current pandemic, human rights groups have been silent as the abuses have generally been mild compared with the abuses early in the HIV pandemic where people were denied medical care for example (in Singapore, the then DMS had to write a letter to all docs insisting on the duty of care for all Singapore docs to HIV positive patients many years ago!). Thankfully that has not happened with H1N1 2009 swine flu.

You are also correct that in a completely celibate nation, sexually transmitted diseases would disappear.

gigamole said...

"You are also correct that in a completely celibate nation, sexually transmitted diseases would disappear."

Cool...and so would the human race. :)

leon said...

There's a difference that we should appreciate between H1N1 and HIV. In policing the former, we can impose reasonable limits on human rights in the interest of society. In the latter, policing would entail the government legislating all the way into our bedrooms.

It is true that emergency situations necessitate limits on human rights, but it is abhorrent to suggest that that line of logic should be taken to its extreme where all human rights can be sacrificed out of necessity. I'm sure everyone can agree that killing suspected carriers of an uncurable disease is a path that no civilized nation will ever do.

There is a reason why the label of "life style" (however accurate this label is) has been given to HIV. Simply since the transmission of the disease occurs as a very private part of someone's life. And while we can all be worried about the HIV situation here, we should be even more worried about inviting the state to intrude into what is essentially a private sphere which the law has no business with.

Quite apart on the normative issue that policing HIV prone activity is an intrusion of the state into our private lives, the question is whether even if such laws are enacted, would they even be effective.

1) Policing these laws, short of installing cameras in bedrooms is impossible.

2) Sexual desire is a fundamental part of being human, and so even with laws prohibiting certain sexual behaviors, it is unlikely that they will be observed. A current example is that for all the noise about 377a, not is observing it.

Finally, I don't quite understand why this blog seems to antagonize homosexuals with regard to HIV. As I understand, the actual act that causes transmission is not unique to homosexuals. Sexual intercourse happens all the time.

Perhaps some argument can be made that since the anal cavity is more prone to bleeding, therefore anal sex has a higher chance of transmitting the disease. The irony of this argument is that anal sex per se is not unique to homosexuals either. In fact, s377 which banned anal sex between heterosexual couples was repealed in the same bill that retained s377a.

So if we were to be honest with ourselves, the problems that give rise to HIV transmission are not specific to any particular sexual orientation. The government can assist by limiting these problem areas (ie: education as to sexual health and condoms, clamping down on drug consumption and the use of needles), but after some point, the government really cannot do much more. That is, unless it actively regulates sexual behavior, which is a nightmare i hope we all never need to visit.

gigamole said...

Leon,

I don't disagree with you with respect to pretty much all your points raised.... but regulating bedroom activities is no more difficult than regulating non-bedroom activities...except the latter is minus the emotional baggage.

But all that is missing the point of the post...which is that objectively, in the management of an infection of pandemic proportions, one must try and isolate the infection when the patient is infective so that transmission doesn't occur. We tried very hard with H1N1.... but I don't recall we tried half as hard with HIV. Largely because of all the human rights hullabaloo.

Perhaps if we had been as hard nosed about it in the early stages we might have done a bit better managing the pandemic.

But all that is kinda academic now since we are in the mitigation phase for both H1N1 and HIV. Still I think we can do better if we look at the problem objectively and call it as it is.

I amsurprised you think I am deliberately antagonizing homosexuality with my comments. Perhaps you are too sensitive. All I am asking for is some honesty and objectivity. If it affects homosexuality more than heterosexuality, lets not pretend it isn't so. It started as a homosexual disease and then spread to the heterosexual community. Even so, the data that MOH has seems to suggest it is still very much a homosexual disease. It is spreading faster in the homosexual community than among heterosexuals.

I can say it isn't so, but would it help us manage it better? Does the world look better if we wear a blindfold?

leon said...

I'm not quite sure how regulating bedroom activities is at all easy. For it to be meaningful, the government would at very least require contact tracing with everyone you have had sex with. This alone is open to an immensely high probability of lying, since a person's sex life is a)immensely personal and b) potentially very sensitive, especially where multiple partners are involved and finally c) there is no way of verifying what the person has said.

Considering that the bulk of HIV prone individuals fall within the second part, I am very much in dark as to how this would be at all feasible.

Contact tracing works for H1N1, since a question like who have you spent time around or where have you been isn't very invasive, and people have very little reason to falsify their answers.

And this is merely what i think to be the easiest of things the government can do. H1N1 styled quarantines (impossible to do since recovery isn't a possibility, unless we're quarantining people to their death) or bedroom surveillance (ethical objections aside, there is the resource cost) are monsters by comparison.

Your post seems to be premised on the grounds that the government did not do enough for HIV prevention, and the question i would ask is that what more could it have done? Beyond our regime of compulsory blood tests for high risk groups?

I suggest that you are perhaps too focused on the medical aspect of HIV as a pandemic. There is a social significance to how we treat people infected with a pandemic disease. If the government had chosen to implement what might have been more draconian measures such as perhaps banning HIV persons from certain things, then the stigma faced by individuals would have been even more immense.

While the scientific answer might call for the isolation and treatment of infected areas, the social cost of that is simple too high for any rational government to pay.

gigamole said...

hmmm.... I don't know.....
One could advance the argument that if only a fraction of the estimated >25 million deaths could have been saved, the curtailment of some civil and personal liberties might have been worth it.

But this is with the wisdom of hindsight.

The other problem in the equation is that the burden of the curtailment of personal liberties is largely borne by citizens of developed countries, while the deaths are overwhelmingly real in poor developing countries.

The scales of justice are not balanced.