The Real Travesty of HIV Care in the United States

By Tim Horn at POZ.com
on May 4, 2012 

Roughly a year ago, I was asked by Jose Zuniga of the International Association of Physicians in AIDS Care (IAPAC) to serve as a writer and member of the first-ever blue-ribbon panel assigned with the task of developing international guidelines for improving engagement in HIV care and treatment adherence. The Guidelines for Improving Entry into and Retention in Care and Antiretroviral Adherence for Persons with HIV were first made available online ahead of print by Annals of Internal Medicine on March 5 and were eventually published in the May 1 issue of the journal.

The experience was eye-opening, to say the least. Working most closely with two of the smartest, dedicated and caring HIV-treating clinicians and researchers I can name–Michael Mugavero, MD, of the University of Alabama, Birmingham, and Melanie Thompson, MD, of the AIDS Research Consortium of Atlanta–I was most heavily involved in the sections focusing on entry into and retention in care. Basically, I was charged with reviewing to what extent people living with HIV are actually receiving regular care–irrespective of whether or not actual HIV treatment is prescribed–and coming up with recommendations to shore up weaknesses. How hard could this possibly be?

Well, it turned out to be much easier than I thought, only because the national portrait of entry into and retention in HIV care has been consistently abysmal and the astounding dearth of data from well-designed studies exploring entry and retention strategies that could be used to construct well-formed recommendations.

In retrospect, I would have liked for my job to have been much, much harder.

Reading through the rest of the IAPAC guidelines, it is abundantly clear that the pharmaceutical industry, along with public and private research networks, have done a bang-up job improving our ability to adhere to HIV treatment. Millions, if not billions, have been spent on transforming fistfuls of relatively toxic pills, taken multiple times a day, into safer coformulations and novel combinations that involve taking no more than one or two tablets or capsules once or twice a day. There have also been several well-designed studies exploring the utility of treatment adherence strategies, such as directly observed therapy, electronic pill bottle caps, text messaging, phone calls, educational programming and a variety of counseling methods.

Synthesizing all of the treatment adherence data for the sake of best-practices guidelines wasn’t easy, for sure, but the end result was a clear set of conclusive recommendations based on strong scientific conclusions.

However, none of this–the ability to prescribe easy, highly effective treatment regimens and a plethora of adherence tools to prolong our health and prevent ongoing transmission of the virus on a massive scale–matters if we can’t first get people living with HIV connected to regular care.

The situation is direr than I, for one, ever imagined. Only in recent years have data emerged, underscoring how far off we are from a central tenet of the National AIDS Strategy: Ensuring that all people living with HIV are well supported in a regular system of care.

Consider the following….


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