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A proposal for rolling out universal testing

A Commentary

Timothy Kincaid

July 20th, 2012

Image from Brooklyn Men Konnect - a testing project

Yesterday I told you about something that Phill Wilson, Executive Director of the Black AIDS Institute said that inspired me to start thinking of HIV transmission as being something we can bring to a stop. But Wilson said something else that made me less happy.

Neither Black America nor the LGBT community has made the fight against AIDS among Black gay men a priority.

Sadly, that too is true. For far too long the gay community has pretended that one size fits all and that what’s good for gays is good for black gays. And we have chosen not to notice that merely identifying a program as being targeted at gays well make it a program that alienates many black men who have sex with other men, regardless of how they identify.

So it is fitting that we take the first steps toward full knowledge about HIV infection in the community in America that is hardest hit, the African American community. But I don’t make this suggestion out of some altruistic notion or that it’s ‘their turn’; rather, I have very pragmatic reasons. For a roll-out of a universal testing program to be effective, the following two criteria must be met:

1. The first phase must have high, nearly universal, participation
2. The first phase must show dramatic results.

We live in a divided society in which support of a program – any program – by one segment of society virtually guarantees opposition by another. And, as the First Lady’s nutrition efforts show, including “everyone” only fractures your target population. Any roll-out that starts with a diverse demographic – say “all the residents of Memphis” – is designed to fail. Far too many people would immediately go to “oh that’s just the gays” and once that definition was established participation would not be much other than the usual gays and supporters.

I don’t want to support a program that is designed to fail. We have to think outside of the parameters of lines on a map. And we must be willing to think pragmatically.

Racial identity is a self-selection that allows for nearly complete inclusion. African American is an identity that includes Larry Elder and Al Sharpton, the richest businessman and the poorest indigent. It is an “us” that is stronger than economic or political boundaries. And HIV disproportionately impacts the black community – and by disproportionately, I mean HUGE disparity – a fact that is increasingly becoming known within all segments of African American society. It is much less “gays get that” and becoming understood that “this is a problem in our community”. I believe that African Americans are one of the few demographics that could coalesce around this project at its inception and make it work.

And the results of an effective testing program within the African American community would impressive. So impressive, I believe, that expanding the program would be a given. Where as in the nation as a whole, the rate of unknown infection is between a quarter and a third of those infected, about sixty percent of African Americans with HIV are unaware of their status.

If we could give some discrete population of black men and women the knowledge of their HIV status and access to the tools to address transmission, I believe that this knowledge would result in a precipitous drop in the spread of the virus. And I believe this drop would be the result needed to convince our population that HIV transmission can be stopped and that the effort to stop it is well worth the expense.

Yesterday I discussed the tools we have that could stop the transmission of HIV, all of which are based on knowledge about one’s serostatus. Today I offer the following for consideration, keeping in mind that our task is testing for HIV infection but our goal is stopping the transmission of the virus altogether.

Suppose that the target population selected were the black community in Washington DC. And suppose that a program was created in which every African American in the city who was sexually active – or had been in the past decade, or intended to be in the next – were to take an HIV test whether they were a girrrrrrl or the right reverend bishop at the First Church of Abstinence. And suppose that in subsequent years it were continued to those who were sexually active. And suppose that a firm commitment was made to find funding to provide care for the newly diagnosed who lacked financial ability.

Estimating 250,000 African American residents of sexual activity age, a three-year testing program would cost less than ten million dollars (cost of care is a separate concern – one which should be considered whether a testing program is established or not).

With one of the highest HIV rates in the nation, along with one of the most rapidly increasing HIV populations, this could be an ideal test location. If, as I believe, the rate of increase dropped precipitously over two or three years of testing – especially if compared to other major urban centers – it would take very little persuasion to convince politicians that this is a very cost effective long term solution.

Selling this idea would not be easy. It would require laying down political and religious mistrust and posturing. And it would require that heterosexist presumptions about “who gets it” be discounted.

But I believe that if every black senator and congressman, every local preacher or official, and the President himself took the lead it could be possible. And if neighbors and community provided encouragement (not taking “no” as an acceptable answer), it could be possible. And if (but only if) the churches got behind it, it could be possible. And if employers supported the effort with on-site participation, it could be possible. And if obviously not-at-risk church ladies set the example, and shamed the rest, it could be possible. And if service agency made testing part of their program for those not included through usual means, it could be possible. And finally, and most importantly, if this is not some outsider coming in to tell blacks what to do but instead if it could somehow be made part of a black identity – led by black people and directed to speak to black people about stepping up for the community – it could be possible.

And remember, our goal is not “test the blacks in DC”, this is just our initial demographic. It is just the first step in rolling out this project to the broader populace.

Perhaps the next step is to target the other half of of DC’s population and see if we could get close to 100% testing in the entire city. If the results are as I think they would be in our roll-out demographic, it would be an easier plan to sell. While I think that if we start with the entire population of DC we would get very little participation from most congressmen thus starting with an image of failure, the success we establish from the roll-out should result in a much higher degree of high-level participation thereafter. And after DC, on to a small state – perhaps Maryland. And so on.

This is just one proposal. Others may have better ideas. Perhaps there is a better demographic in which nearly universal participation could be achieved and in which the results would be dramatic.

But, for the first time since I first heard of this virus on the news as a scared college kid, it is now not only possible but feasible and practical to stop it in its tracks. If we have the resolve to do so.

Comments

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Mark F.
July 20th, 2012 | LINK

In one sense I can see the project proposed as being wasteful of resources: Sexually active males who have not shared needles with others or engaged in sex with other males are almost never going to test positive. (Magic Johnson is the rare exception.)

But I can see the overall value in the proposal.

Gene in L.A.
July 20th, 2012 | LINK

Unless it’s made mandatory, it will never be universal.

PJB863
July 20th, 2012 | LINK

Even if you make it mandatory, it can’t be universal. Also, if you’re negative this month, what’s to say you won’t be pos next month, after you’re tested, if you are not careful – and LOTS of people are not careful.

Tested is one thing, not transmitting the virus is another. Humans will always behave like humans, both good and bad behavior.

Wyzdyx
July 20th, 2012 | LINK

Wasn’t the idea of universal testing negated in the 1980s when it was a form of discrimination against gay white men, Haitians, and hemophiliacs? Why would you think the universal testing of all African-Americans in D.C. (or anywhere else) would be warmly received by the targeted population?

Hue-Man
July 20th, 2012 | LINK

I apologize in advance if my comments are racially insensitive – I live in a province where the non-white population is only 30%. Earlier this week, my comment included the link to the Globe & Mail article about B.C. seeking to eliminate HIV/AIDS through identification of the estimated undiagnosed 3,500 HIV patients. Along similar lines is this item from earlier this month: “The BC Centre for Excellence in HIV/AIDS (BC-CfE) today announced the launch of an 18-month pilot program to prevent infection in people who have had high-risk exposures to HIV through sex or sharing needles.”
http://www.cfenet.ubc.ca/news/releases/bc%E2%80%99s-treatment-prevention-strategy-expands-with-pilot-project-non-occupational-high-ri

Here, HIV/AIDS reduction is considered to be an important health issue; no one worries whether the person having unsafe sex is from Hong Kong or the Punjab or Manila, whether the IV drug user is First Nations or white. No one worries that the leader of the anti-HIV effort speaks English with a Spanish accent. The U.S. seems to have lost the will to win – it’s so much easier just to fight wasteful, pointless battles.

My own personal concern in B.C. is IV drug users because they represent multiple threats. They are least likely to comply with HIV and HEP C drug regimens, their financial situation often leads to unsafe sex to earn cash, they have weak links to health services, they represent a crossover for HIV/AIDS to spread more widely in the hetero population. Be sensitive to the social and cultural issues but focus on the health problem.

Andrew
July 21st, 2012 | LINK

Mandatory testing is not how things are done in this country, folks. Has anyone considered the controls required for mandatory testing? How would we know if you’d tested or not? I guess we’d have to have your results…

Also, how have state laws concerning anonymous testing been dealt with in releasing the new at-home testing kit? Almost every state has require-to-report laws (by name and social, not by the old identity-safekeeping codes).

Joe Beckmann
July 21st, 2012 | LINK

There are some critical pre-universal steps that have yet to take place. The most obvious, easiest, and most critical assessment is to look more closely at the impact of universal health care in Massachusetts – RomneyCare – for what it teaches about treatment=prevention, the mantra from British Columbia, as echoed in San Francisco and New York.

In truth, at the very least, Massachusetts has gone from 1200 newly reported cases in 2003 to less than 400 in 2010. That might seem dramatic, but, among those 400 “new” cases, 32% are “Dual Diagnosed,” or both HIV and AIDS. That means that AT LEAST 128 are three to ten years from infection, and that there are fewer than 275 new cases, or more or less 77% from those 2003 numbers. (I’m aware of “old case” ratios in 2003, but I’m also sure those ratios have increased markedly in the last decade.)

This both validates the B.C. data that treatment sharply reduces if not eliminates the chance of new infections by existing patients, and the critical changes that ObamaCare replicates from the RomneyCare model: easy access to testing which does not risk insurance cancellation, and easy, low cost, insured treatment with minimal side effects for the patient.

It also confirms patterns observed at the end of every other viral epidemic: older cases, long ignored tend to increase relative to new infections in the “universe” of “new cases.” In other words, as an epidemic ends, more and more old and often asymptomatic, denied, or ignored infections fill the pool of new reports, and really new infections drop even faster than the public (or, in this case, medical professionals) anticipate.

I raise these issues because it’s not universal testing that makes the difference: it is how low-risk testing combine with easy access to treatment, and how readily patients comply with that treatment.

Realize that politicians like Governor Perry, of Texas, with typical sensitivity, argue against state adoption of the ObamaCare state option. Meanwhile his state, like about a half dozen others, put people with HIV+ on waiting lists for HAART until they themselves become symptomatic. That leaves them – like active time bombs – either deliberately or accidentally available to infect many victims more before their HIV reaches a point of symptom. In other words, that exacerbates the very epidemic they claim to want to end.

It’s not complicated. It’s obvious when you look at their data. While Massachusetts (and New York City and San Francisco, where testing is also virtually risk free) reduces new infections by 70% to 90% (depending on what you count), Texas and Florida and North Carolina increase their rate of new infections, as a direct result of inept HIV treatment and prevention policy.

All of this is background to issues of HIV among low income, racial, and linguistic minorities, who are most effected by public health policy and least – and last – likely to benefit from changes like ObamaCare, and are not even receiving Ryan White supported treatment available in other states. Before promoting universal testing, promote it’s safety, and the continuity of care such tests will inevitably require.

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