Earlier this month, we printed a story highlighting HIVMidTN, a digital ‘211’ HIV/AIDS resource, and it’s 300 to 12 campaign. After its publication, we received several messages questioning the article, organization and its claims. Here is one such letter:
I’m writing in response to last month’s article entitled “HIVMidTN launches digital ‘211’ HIV Service.”
I admire any effort to raise awareness about HIV and combat related stigma. I love and support the organization’s stated vision of zero new infections.
An aspirational slogan of “From 300 to Zero” would have been terrific. Sadly, the purportedly evidence-based “From 300 to 12” campaign is misguided for a number of reasons. It represents an unfortunate level of misunderstanding, misinterpretation, and misapplication of the current science, constitutes miseducation, and could result in increased stigma, shaming, and coercion.
The HIVMidTN.org website references a single study as the basis for the campaign, and Nancy Reece stated in your article: “if those 300 recently diagnosed people received the care that is available to them on an ongoing basis, that number would automatically drop to 12 [new cases of HIV per year].”
I'm intimately familiar with the referenced HPTN052 study, having followed its progress and results since attending an early NIH meeting on its implementation. Unfortunately Ms. Reece’s statement and similar assertions made on the website are inaccurate.
First, the majority of new infections are believed to originate with undiagnosed individuals, which in the US represent 16% of living HIV-positive persons overall and dramatically higher percentages in youth and gay and bi men of color. Linking recently diagnosed persons to care will not have an impact on these transmissions.
Second, the inherent assumption that the 300 recently diagnosed individuals were infected by 300 previously diagnosed persons who were not in ongoing care is false. The reality is more complicated than that. It is much more likely that they originated in a smaller number of individuals, since not every positive individual transmits the virus, and others may transmit to more than one person.
Third, HPTN052 was conducted in committed heterosexual couples where one partner was HIV positive and one partner was HIV negative. It is believed that nearly all of the risk in the study was from vaginal exposure. Obviously, not all transmissions occur via this route.
While it is believed that a substantial protective effect from successful treatment is also realized in IV drug users and the gay and bi men who represent the majority of newly infected individuals in our region, we do not have the same kind of evidence for them and can't know whether it will offer the same reduction in risk. Likewise there isn't similar data for folks who are not in these kinds of committed relationships which could well have had an impact on outcomes. Such studies are now underway.
Fourth, it is reasonable to expect outcomes in the less controlled, broader environment of real world application will be less robust than those in a clinical trial.
Fifth, our best efforts to date in the US to get the total population of infected folks through the process of diagnosis, linkage to care, treatment, and achieving an undetectable viral load have only yielded about a 28% success rate.
My “back of the envelope” estimate indicates that given these facts an optimistic evidence-based goal might be a reduction from 300 to 200 diagnoses over a period of years. This is reasonably consistent with the 5-year U.S. National HIV/AIDS Strategy goal to reduce new infections by 25% and a similar Tennessee Department of Health goal. Since HIVMidTN decided to opt for an evidence-based vs. an aspirational campaign, it might have been better to create one consistent with established goals.
Why does this matter?
Failing to recognize that the HPTN052 did not include any significant participation from gay and bi men or transgender women is insensitive to these incredibly affected populations.
Conveying false precision about treatment as prevention’s potential to reduce the risk of HIV transmission, particularly in the most at risk communities, may complicate existing education efforts and have the paradoxical effect of reducing use of other effective prevention strategies.
Basing a campaign on the idea that it is always easy or simple to start and succeed with treatment or to help diagnosed folks do just that risks shaming patients who achieve less than ideal success and disrespecting the hard working professionals who take on the task of supporting them.
An intense focus on treatment of diagnosed individuals as a singular means of dramatically reducing new infections is not justified by current science. Placing the responsibility for halting the transmission of HIV solely on the shoulders of those who know they are living with the virus is unreasonable and unjust.
Finally, the “From 300 to 12” campaign is insensitive to the importance of avoiding any coercion of individuals to begin treatment before they are ready, a concern currently being addressed by the international "Community Statement on Treatment as Prevention."
If HIVmidTN is serious about helping the incredibly rich and capable network of organizations already effectively fighting HIV/AIDS in our region, it would be wise for it to put a hold on this campaign, obtain substantial education and understanding of the issues, and seek real collaborative engagement with that network before moving forward.
I'd be happy to be part of such an effort.
Mark Hubbard is the educational liaison for the Tennessee Association of People With AIDS, the recipient of a community educator scholarship to the Conference on Retroviruses and Opportunistic Infections for the last five years, and represented the community on the Nashville Health Management Foundation board of directors in 2010 & 11.