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HIV Testing and Informed Consent

AIR DATE: Thursday, April 10th 2008
Download the mp3 for this show.
Should regular HIV tests become standard medical practice?

How many hurdles should you have to jump through before getting an HIV test?

Unlike most STDs and other diseases, HIV tests in Oregon require a patient's informed consent. These consent laws, which were enacted along with other restrictions in the 1980s and 1990s, were intended to protect the privacy of HIV/AIDS patients struggling with the stigma the disease still carries.

Recently, though, doctors have been looking at the nationwide disparity between the number of people getting tested and estimates of HIV-positive people. For example, according to state epidemiologist Sean Schafer, there are just under 5000 total reported cases of HIV in Oregon. But he estimates that there are another 1700 or so Oregonans living with HIV today who don't know it. What's worse, those unknowing carriers are thought to be responsible for half of all new cases.

To address these kinds of disparities, the CDC released a new set of HIV testing recommendations in 2006:

  • HIV screening is recommended for patients in all health-care settings after the patient is notified that testing will be performed, unless the patient declines (opt-out screening).
  • Persons at high risk for HIV infection should be screened for HIV at least annually.
  • Separate written consent for HIV testing should not be required; general consent for medical care should be considered sufficient to encompass consent for HIV testing.
  • Prevention counseling should not be required with HIV diagnostic testing or as part of HIV screening programs in health-care settings.

Oregon and Washington are currently talking about implementing the CDC's recommendations. But some members of the HIV/AIDS community are concerned about potential changes to the informed consent laws. For starters, they believe that signatures before testing allow for more patient control. And they worry about questions of privacy, inadequate (or non-existent) pre-test counseling, and insufficient resources for the disproportionately high numbers of HIV/AIDS-positive citizens without health care.

What's your experience with HIV testing? If a stigma does persist, is it too early to drop informed consent restrictions? Is it possible to streamline a testing process while maintaining the care and counseling that many patients might need after receiving a positive result? Is Oregon's health system capable of supporting a large number of newly tested, uninsured HIV+ patients -- and is any answer to that question a good enough reason not to encourage more testing?

GUESTS:

Tagged as: aids · hiv · informed consent

Health officials believe there are.But not every AIDS researcher feels that way.Maybe people wrong maybe not but men with hiv symptoms and women with Hiv today is very endangereus for this disease

icemannn —
I understand the reasoning behind wanting more people tested but disagree with testing without informed consent. Who would pay for this mandatory testing? And who would help the patient who tests positive and whose insurance company drops them? And, if testing is mandatory, how do you deal with the privacy and security of those results? Jobs could be lost, families destroyed if privacy isn't assured. Oregon's health system cannot handle the patients now who need health insurance, how in the world would they handle new HIV patients?
senior60 —
Senior60: I'll bring your questions up with our guests, but just to clarify a bit from my own limited knowledge of this issue: I don't think the state (or the CDC) is advocating mandatory testing. They want to remove the barrier that they see written consent as, and replace it with an "opt-out" system. So that whereas now the default is that you haven't consented to a test until you write that consent, in the future -- were these new practices put in place -- you would be notified that an HIV test was part of a battery of tests to be administered, and if you didn't specifically "opt out" (by saying no) your consent would be assumed. I hope that makes sense!

As for paying, we'll bring that up in the show. I don't think anyone is talking about a very different system -- in terms of payment for tests -- than we have now.
David Miller —
The question about what would happen if HIV testing were to prove positive for a person who simply had been in a hurry and not opted out. It would make it impossible to get insurance from that point on. I imagine that if you were already covered by an employee plan you could keep that, but anywhere else it would be a pre-existing condition. I would prefer to see a Opt-In clause for those of us who don't read those forms we sign closely. My experience in the Health Care area says most people don't.
wandapease —
This is difficult - if everyone had the opportunity to be tested, it could make it easier for those patients that are afraid to ask - and should be asking. However patients without insurance might not wish to be tested and that could put them in an awkward position.

Is the stigma from HIV really gone? If someone declines the test can we trust the objectivity of health care providers not to make assumptions about the patient?

Currently insurance companies are free to discriminate at will. This legal discrimination is egregious and downright absurd. Until the USA has universal health-care and everyone is guaranteed coverage then I think testing should be by patient request.

-Portland, Oregon
scottmil —
My concern is that simply getting for tested for HIV can effect your health insurance costs- because I have been told by Doctor's office's that simply getting tested infers that you are involved in risky behaviors.

I get tested (annonomously) every year at Planned Parenthood. Because knowing is key.

Thank you for bringing up this subject.
Starkmojo —
As a gay man who lost many friends in the 1980s and 1990s I am in favor of streamlining testing. I was a volunteer AIDS test counselor in California. HOWEVER, it does seem to me that those most at risk already know how to find a free test site. Further, gay men will continue to only go to anonymous test sites because of potential public and private ramifications. I think it may be a waste of time to test the entire public who are not at risk in our population. I would NEVER have the test done at my doctors office
AFrankA —
Hi Frank,
In some locations, the fastest growing part of the HIV population are women who have sex with men who engage in high risk activities. They are at risk without knowing it.
Starkmojo —
I am wondering why "everybody" might need to be tested, and who "everybody" includes. My five-year-old daughter? Surely we aren't all at risk. I've never had a blood transfusion, never used needles, and had only one sexual partner--my spouse, who has had only one sexual partner, me.

Can that be clarified somewhat?
Anne in Eugene —
Your daughter aside- how many people who discover that they have HIV thought their partner was faithful?
Starkmojo —
The public safety may need to trump the personal privacy issues here. All other STD's like syphlis, gonnohrea etc are treated as public health issues and dealt with accordingly. There are better treatments now and the stigmas are changing. Sooner is better.

Also, when we give blood at the blood bank, isn't it automatically checked for HIV? I would certainly hope so.
Grace E —
How much of this is motivated by saving money rather then saving lives? If you want to save people then find a way to fund statewide health-care for all. After that is achieved then implement testing.
scottmil —
Opt out testing is the way to go. I find it ironic that the only objections are the "stigma" and insurance and how to handle new HIV patients who are found through this method. What about the new HIV victims who are infected by someone who does not know they have the virus? What about their insurance? What about their lives?

And doesn't making HIV testing an exception to the rule contribute to its stigma?

We need to find everyone who is infected so that they can be truly informed. It is insane not to pursue this route.

My brother died from AIDS. He had the virus for years before he knew it. During that period, he impregnated two women. Thank God neither the mothers or the kids got the virus, but it could just as easily gone the other way.

Test. Now.




Luke T. —
The questions submitted by Senior60 reminded me of news stories several months ago about increasing incidence of HIV infection in the retiree population - a group that may not consider themselves at risk. Is the incidence of HIV infection increasing in the Medicare population in Oregon, supporting the case for routine testing? Does Medicare comprehensively cover HIV treatment?
Thank you.
beamer —
I personally was too afraid to ask my old doctor for an HIV test. It was a doctor at Providence and considering their logo is a cross I wasn't sure that the doctor wouldn't make assumptions about me and treat me differently. So I actually went elsewhere but not until months later. I did not have HIV, but my fraidy-cat behaviour was irresponsible and could have lead to dire consequences. Perhaps this could have been lessened if they asked each patient?
scottmil —
That's kind of the point I have been trying to make about the stigma. If you have everyone take the AIDS blood test, it becomes, by definition, normal.
Luke T. —
Its not really the point you were making. It isn't as simple as you proposed. You can't trust health-care providers to be objective and as much as testing could help it could also scare people away if it is done improperly or if declining has a negative stigma.

I could very much imagine opting-out being an immediate red-flag at some doctors' offices and certainly for insurance companies. Perhaps some people who are involved in risky behaviour just won't go to the doctor at all. If this opting-out is in medical records then it certainly seems that insurance companies could use this information and make assumptions about the patient and refuse further coverage, which is a very real problem and could be a real deterrent to people getting medical attention.
scottmil —
I think it is important to recognize that HIV stands for Human Immunodeficiency Virus - and I place emphasis here on the term "human". As humans we are all at risk of this virus and thus testing it on a universal level is prudent!One ca't forget that it is commnunicable in numerous ways, which are not inherently associated with particular demographics. It is exactly this mentality that has resulted in a proliferation of the virus in the least suspecting of people, who in turn do not take measures to acknowledge that we are all in this together. Everyone should get tested fairly regularly - either yearly or, with sexual activity or drug use or blood transfusions in mind, more frequently.
chancito —
HIV testing should be thought of as no different than cholesterol testing. Abnormal results for either have life threatening implications, both require lifestyle changes and may require the use of medications. Neither has a "cure" but both are now manageable. HIV however is connected to SEX. The taboos, rules and fascination of Americans with issues involving sex are legion, even presidents and governors are not immune. If we can get past the "sex" stuff, HIV diagnosis and management can be handled in the medical context successfully. I am a physician who has had very little experience with clinical HIV though I have ordered many tests for it. The informed consent requirement is a barrier to testing. All tests should be discussed, few doctors have time to discuss the implications of most tests, let alone one as emotionally charged as HIV.
Eric Brody —
Our insurance system and its "pre-existing condition" clause is the deal breaker.

My health coverage lapsed when I changed employment a year ago. I recently applied for new coverage and was rejected because I have HIGH CHOLESTEROL. I can only imagine, if I can't get health insurance because of my cholesterol, a person who tested positive for HIV would never be able to be covered.

Until our entire nation converts to a single-payer system and outlaws pre-existing condition clauses, your proposal could ruin people's lives instead of helping them.
Jesse42 —
Me and my wife was married for the past 6 years. I was sexually active before marriage, last year my wife was pregnant and the hospital tested her for HIV 2x and she is Negative. Does that means i am fine or do i still need to get tested? Can we save the cost?
daniel 97212 —
YOu still need to be tested. It is easier for a woman to be infected by a man than vice versa. And as I mentioned above, my brother had AIDS and impregnated two women. Both women and both daughters tested negative, thankfully, when we found out my brother had AIDS. He was in full blown AIDS with a T-cell count of 30 before he found out!
Luke T. —
I recently accompanied a friend with AIDS to a Cascades Aids Project interview. I was told that I should be tested. I wouldn't mind being tested, but there was no information offered on how, where, and what the cost would be to be tested. Perhaps if everyone was tested, this would not be a problem.
EileenRN —
Regarding stigma:

I am an HIV+ gay man, and experience the stigma of being HIV+ often. People seem to assume that I've engaged in risky sexual behavior and contracted the disease, and are passing a moral judgement. I contracted HIV from being raped in jail. It DOES seem to matter how you contracted HIV. I wonder if it matters how you contracted cancer or any other chronic disease?

I had my first HIV test in 1986, and always opted for anonymous testing. When I contracted HIV in 2001, I initially tested anonymously. When the result came back positive, I spent some time preparing for my medical records and my life to be branded as 'HIV+'. Part of this process has also been the branding of being labeled 'disabled' because of this disease. It's not surprising that many HIV+ people are suffering from depression and other mental problems. These two terms, 'HIV+' and 'disabled' are loaded with stigma in our society.
ML5733 —
I went two weeks ago to a Providence Immediate Care center for pneumonia and while there asked for a full STD test since I had never asked for one ever before. They refused specifically to give me an HIV Test because "no counselors are at this location and that is required before we give you the test."
Personally I find this a serious hindrance to being able to give information -- even to a willing (and paying) patient when I could just as well go downtown on a weekend and get it without this hassle.
I would propose that if someone is willing to ask for it they sure as hell deserve to get it without issue from the health care provider.
1pdxnative —
I didn't have medical insurance for a number of years and so I never got tested. What was the point, I thought. I couldn't afford care - so why torture myself about something I could do nothing about.
calwaugh —
If I understood the Central Blood Bank material correctly, I'm tested for HIV when I give blood. It was a little disconcerting the first time - worried more about a false positive than anything else...
lbryan —
I realize this is well-intentioned in terms of public health, and having been tested myself (fortunately negatively) I personally don't mind being tested. I'm from Canada and had to have an AIDS test when I applied for citizenship. However, having been, for a short time, a seller of private medical insurance here in the U.S., I have NO DOUBT whatsoever that being HIV+ will just be one more reason for health insurance companies to deny a person the health care they so desperately need. I think the REAL problem here is a health care system that relies on PROFIT based companies to provide care for the citizens of this country. I realize Americans seem to have an inbred fear of anything run by the government (SOCIALISM, COMMUNISM they scream) which explains why they cling to a system that deprives the very folks it claims to insure of the very things we need. SICKO should have been a great wakeup call for those smart enough to view it. Socialized medicine is not perfect, and people who have it still complain, but that is only because they have not experienced the American system and have no idea what underinsured, or uninsured people go through here. If you want to make money on the stock market, invest in health insurance companies. They are the only ones benefitting by the current system. And that is why AIDS testing should be voluntary, and there should be a law set up before this testing starts to take place, that IF you are HIV+, ALL insurance companies, BY LAW CANNOT deny you care.
Diane Raven —
Everyone should be tested. Period! I am very healthy but I am single and if I get into a relationship, I want to know if my partner is clean.
wildlifeusa —

Comments are now closed.

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