It’s the subject no one wants to discuss: sexually transmitted diseases. And even fewer want to have an in-depth conversation with their doctor or nurse about them.
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So, to many who are worried, the idea of being able to take and get the results of STD tests in the privacy of their homes is appealing — if the tests actually work, that is.
While a minor for-profit industry for “at-home” STD tests has sprung up, research shows that their quality is often sketchy. So far, the federal Food and Drug Administration has not cleared or approved any at-home STD test for sale. But depending upon where you live, you might be able to save the money and order reliable at-home kits for some STDs for free.
That's according to Charlotte Gaydos, an STD and public health expert at the Johns Hopkins University School of Medicine in Baltimore. Last year, Gaydos surveyed the services of online, for-profit companies peddling at-home STD tests — and she got a shock.
“We wanted to see if people were [processing] these tests on their dining room table or in a barn,” she explained.
No response, or worse
But when she tried to contact most of the companies, she could not even reach them.
Worse, of the six websites from which she was able to order kits, she received results only from four. (Two of the sites never returned results, despite repeated requests.) Of those that did give results, half of them returned falsely negative test results, even though Gaydos had loaded the samples with Chlamydia bacteria.
“This needs to be controlled and so far the FDA has not been controlling these sites,” said Gaydos, who declined to name the specific companies.
The agency is aware of the issue. According to the FDA, when it realized last November that a company called Identigene was selling its kits through Rite-Aid stores, it fired off a letter warning Identigene that the kits were not approved.
Identigene sells the kits for $119 to customers who complete a home collection, mail the kit back, wait a few days, visit the website, click on a password-secured page and find out if they’ve either of the two diseases Identigene tests for, Chlamydia or gonorrhea. Identigene officials refused to say how many of the tests they've sold.
FDA placed Identigene’s kit under “enforcement discretion” which meant the company could still sell the product while it tries to win approval. Steve Smith, executive director of Identigene said the company expects to be in full compliance by late summer 2011.
Despite this checkered history of for-profit at-home testing, Gaydos believes that the combination of online access and privacy can be a boon to public health if the tests are done by reputable groups. She and some of her colleagues set up an experiment back in 2004 to prove it.
Undiagnosed STDs are a serious problem. For example, it is thought that millions of men and women are infected with Chlamydia each year, yet only about 1.1. million are actually diagnosed because Chlamydia, which can lead to infertility, does not always cause obvious symptoms.
Free, reliable at-home STD tests available
So, in cooperation with the Centers for Disease Control and Prevention, Gaydos and her team created an Internet-based, self-test service called IWantTheKit.org. At-home test kits are available free with a phone call or through the site to addresses in Alaska, Denver, Maryland, West Virginia, Philadelphia, Washington, D.C., and some Illinois counties.
So far, the program has screened more than 2,600 women and 900 men. Gaydos has discovered the program does find infected people who would not be diagnosed otherwise.
“We compared our prevalence data with family planning clinics, where most young women get screened, and we have a two- to three-times higher prevalence,” she said. “We are reaching people who would not go to a clinic, or who would not want to go to a doctor because, say, if they do, an insurance form comes to the house with ‘Chlamydia screen’ on it.”
The experiment was so successful that it has become a full-fledged public health program funded by grants.
In 2009, Los Angeles County’s department of health started a program modeled on the Johns Hopkins effort through a site called DontThinkKnow.org. Kits and testing are free. So far, the department has filled nearly 3,000 orders, said Dr. Jonathan Fielding, director of public health for Los Angeles County.
Of those, 1,619 have been returned for testing with 8.5 percent positive for Chlamydia, 6.8 percent positive for gonorrhea, and 4.8 percent positive for both. The first-year costs were $50,470.
“That’s a very good start for something that has not been done before,” Fielding said.
Gaydos hopes to find enough money to take such programs national, but there are concerns even with non-profit efforts, explained University of Pennsylvania bioethicist and msnbc.com contributor Arthur Caplan.
Cautions about online privacy
First, is anything web-based really private any more?
“There is very little absolute guarantee,” he said.
More fundamentally, Caplan worries about counseling. For-profit sites do not offer it. So far, both the Hopkins program and L.A. County’s include phone contact with people who test positive and persistent efforts at follow-up. They'll offer advice about where and how to get treated, the importance of partner notification and treatment, the fact that the tests do not check for all STDs, and that it’s possible one has been infected since mailing back the kit. But as the programs grow, intensive counseling may fade.
A personal visit to a doctor, Caplan argued, can lead to important conversations about safe sex, risk factors and the ethical and public health importance of telling sexual partners. Ideally, he said, “you want the interaction with a healthcare provider.”
Brian Alexander, author of America Unzipped, is working on a new book about love, sex and the brain with Emory University neuroscientist Larry Young.
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