Testing Without Treatment

Left Field by Patricia Nell Warren

Increased access to testing will mean little unless access to medication keeps pace.

On April 19, Rep. Maxine Waters (D-CA-35) launched another try in the House with her Routine HIV Screening Coverage Act, under the new moniker HR 4470. It went immediately to committee—as had her two previous versions which she also sponsored and introduced in previous sessions of Congress.

I went to Govtrack.us to read the full text. It certainly has a nice ring: “To amend the Public Health Service Act, the Employee Retirement Income Security Act of 1974, the Internal Revenue Code of 1986, and title 5, United States Code, to require individual and group health insurance coverage and group health plans and Federal employees health benefit plans to provide coverage for routine HIV screening.” HR 4470 goes on to make this rosy statement: “Requiring health plans to cover routine HIV screening as a preventive health service…could play a critical role in preventing the spread of HIV and allowing infected individuals to receive effective treatment.”

The AIDS Healthcare Foundation and AIDS Institute praise the bill. But there’s a glaring omission. The bill doesn’t require coverage for HIV treatment as well. Is treatment omitted because Obama’s Patient Protection and Affordable Care Act is seen as adequately covering the present glaring gaps in HIV care—if it survives the U.S. Supreme Court’s constitutional scrutiny?

Lambda Legal’s HIV project director, Scott Schoettes, recently detailed the gaps for the Supreme Court justices. In a brief, he wrote: “Most private insurers have refused to provide affordable coverage to those with HIV. This market failure has caused serious consequences both for individuals with HIV—who suffer unnecessary illness and premature death—and for society generally in higher overall healthcare costs and lost productivity. Virtually all this suffering is avoidable: Medical care is available that can turn HIV into a chronic, manageable condition.” In an effort to close the gaps, the Affordable Care Act expands Medicaid access for low-income people, and prohibits insurers from using “pre-existing conditions” to bar HIV-positives and PWAs from care. It also keeps HIV testing under the government’s thumb, by granting $4.4 million to the CDC to expand its testing initiative.

For years now, I’ve watched the government building its ideology about the importance of testing and starting treatment early—starting with the CDC’s announcement in 2006 that it was now recommending routine HIV testing in healthcare settings for all patients aged thirteen to sixty-four, regardless of risk. Waters’ bill aims to bring national health policy into synch with the CDC’s recommendation. More to the point, Waters’ bill aims to shift the economic burden of testing from the government (read taxpayers) to the insurance industry.

Still more to the point: HR 4470 could add an estimated 250,000 more HIV-positive people to the national burden of treatment and care. This is the estimated number of Americans who don’t know they’re HIV-positive.

If HR 4470 manages to pass, and the Supreme Court strikes down the Affordable Care Act, we will see a nonsensical situation of testing being more available, but not treatment. How so? Some of those 250,000 Americans will be fortunate enough to have health insurance, so they can get their tests covered. The HIV-positives among them will finally learn their status. But will they be able to afford treatment under the flawed present system? And how many of those estimated 250,000 can’t afford health insurance either? It’s likely that most of these 250,000 are low-income and uninsured. So HR 4470 wouldn’t help them.

The crux of the problem is this: The government’s position pits an “irresistible force”—the idea that everybody should be screened for HIV and treated with drugs—against an “immovable object”—namely the fact that HIV treatment is incredibly expensive. From the beginning, it was a cash cow for the pharmaceutical industry, and it gets more expensive every year. A decade ago, it was commonly said that treatment started at $10,000 a year. Now, going by figures I see quoted, the minimal cost of treatment starts at $18,000 a year. According to the NIH’s 2012 updated charts on drug prices, the wholesale cost of individual drugs ranges from $300 a month ($3,600 a year) for the cheapest item to $2,000 a month ($24,000 a year) for the most expensive one. And that is just wholesale. It doesn’t include the mark-ups, or office visits, or the cost of treating side effects, or testing for drug resistance, etc.

Govtrack gives HR 4470 a zero chance of passing. It points out that “the sponsor is a member of the minority party [and] just 4% of all House bills in 2009–2010 were enacted.” Not to mention that any real human concern for low-income healthcare seems to have vanished like the morning dew from the consciences of many conservative members of Congress.

Passable or not, HR 4470 looks like it’s partly an exercise in political posturing. Waters is running for re-election this year (a twelfth term), and she is out there stumping hard. Clearly this bill is a plank in her platform. And granted, that Rep. Waters does have a track record of gallantly fighting for healthcare reform. She’s looking for votes from Americans who desperately need and want healthcare reform and safety nets. Her bill states that blacks and Latinos have been disproportionately affected by the AIDS epidemic.

However, Waters surely knows that her bill won’t do much for her own ethnic constituency, which is said to have the nation’s highest HIV infection rate of any racial or ethnic group. In 2009, though they comprised only fourteen percent of the U.S. population, African Americans logged forty-four percent of all new infections, and the highest number of AIDS deaths. Meanwhile, African Americans also have the highest unemployment rate in the U.S.—a spooky 13.6 percent at the moment, compared to seven percent for whites. And they are three times as likely as whites to be uninsured. So uninsured black people won’t be covered by HR 4470, and likely won’t be affording their own HIV testing, let alone their own treatment.

Traditionally, many low-income and indigent PWAs could rely on the states’ ADAP programs, provided they could get in. But these programs have been drastically curtailed by budget cuts. The result: longer waiting lists, and an uptick of deaths among those who couldn’t access treatment.

Indeed, we have to wonder where the real AIDS mortality statistics are going these days. For years, the CDC has been reassuring us that U.S. AIDS deaths were staying stable at around 17,000 a year. But I find this round figure hard to believe, especially now that the nation is experiencing economic collapse. Those HIV-positives most likely to die for lack of treatment will be the growing number of citizens who struggle uninsured at the bottom of the economic pyramid—people of color, the homeless of all ages, the chronically unemployed and indigent and substance-addicted, the elderly and disabled, and inmates of jails and prisons where HIV treatment is not available. Surely the U.S. HIV deaths are up from 17,000.

The ultimate fate of the poorest HIV-positive Americans will depend largely on who wins the massive legal and legislative battle over Obama’s Affordable Care Act. If the U.S. Supreme Court upholds the ACA, Waters and her supporters might have a chance of getting her bill passed in the future—unless the insurance industry objects and outlobbies her. If the Court nixes the ACA, we will be back to Square 1.

Meanwhile, another fate factor is whether the Ryan White CARE Act will survive the Republican budget bloodbath and be reauthorized in 2013. But that’s another story.

Meanwhile, let’s face it—the only way the U.S. will be “allowing” all “infected individuals to receive effective HIV treatment” will be if our nation adopts universal single payer healthcare. But the ultraconservatives who now have Congress in a death grip have made it clear that their Biblical hell will freeze over before they let this happen.

Further reading:
Text of HR 4470: www.govtrack.us/congress/bills/112/hr4470

2012 update on drug pricing:

Author of fiction bestsellers and provocative commentary, Patricia Nell Warren has her writings archived at www.patricianellwarren.com. Reach her by e-mail at [email protected]

Copyright © 2012 by Patricia Nell Warren. All rights reserved.

May 2012