For Americans with HIV, there are many obstacles to successful treatment

A new generation of AIDS researchers has emerged that’s trying to discover “risk factors” for inadequate HIV care the way a previous generation had sought the risk factors for infection.

A study published last year followed for four years 842 New Yorkers whose HIV infections were diagnosed during one three-month period. Three-quarters of them entered medical care, but less than half had regular clinic visits, according to the study from the New York City Department of Health and Mental Hygiene. Drug users, African Americans, people younger than 25 at time of diagnosis, and those in the early stage of infection were most likely to disappear.

Gallery

There’s unlikely to be a single fix for the high dropout rate. One thing is certain, however. For the moment, the suppression of “viral load” in the bloodstream — the goal of therapy — can’t be achieved without antiretroviral drugs.

Securing those drugs for patients has preoccupied the AIDS community from the time the first one, AZT, came on the market in 1987. Federally funded AIDS drug assistance programs (ADAPs) have existed in every state and territory since 1990. They became an essential element in American medicine after 1996, when research showed that taking three antiretroviral drugs — what became known as an “AIDS cocktail” — could stop HIV from growing and often restored a person to good health.

About 325,000 of the 1.2 million Americans with HIV have no health insurance and don’t qualify for Medicaid or Medicare. Many of them rely on ADAPs for their survival. As of December, 134,000 got their HIV drugs for free through them, according to the National Alliance of State and Territorial AIDS Directors.

New clients arrive as they’re diagnosed, decide they want to start treatment, or lose insurance coverage that was previously paying for their medicines. They leave when they get insurance again, find other ways to buy their drugs, or drop out of treatment.

As a consequence, the ADAP rolls are constantly in flux.

The federal government’s contribution to ADAPs this year is $933 million. Some states chip in millions more.

Making that money go as far as possible has become an obsession in the HIV community. It is a homegrown version of the better-known fight to make AIDS treatment available and affordable to poor people in Africa and other parts of the developing world.

The struggle by ADAPs to secure lower prices for antiretroviral drugs for their clients has been successful (although not as dramatically as for African patients). Today, ADAPs pay less than other American buyers. As of a few years ago, their prices were even lower than what most European governments, which buy in huge quantities for national health systems, were paying, said Lanny Cross, former director of the New York ADAP.

Pressure has been more important than magnanimity in making this happen.

In the 1990s, Congress required drug companies to give rebates worth 15 percent of a drug’s price to Medicaid and other government purchasers, including ADAPs. In 2010, that went up to 23 percent in the Affordable Care Act (also known as “Obamacare”). Drug companies also must limit price increases to the rate of inflation.

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