August 16, 2006

Sarah Adams, MCC AIDS Coordinator

Testing. With counseling. Voluntarily. VCT. Voluntary Counseling and Testing. It’s all over the world; it’s all over Africa. VCT centers. If you decide, on your own, that you’d like to get tested, you can go to a VCT center. You will go through a pre-test counseling session – usually 30 minutes to an hour. After the counseling session, you will be offered a test. In many places, this is a rapid test. A drop of blood and 15 minutes is all you need. (A drop of blood and 15 minutes is all you need in most of the developing world. In the U.S., you still need a whole tube of blood and 2 weeks to test your HIV status.) Before you leave the VCT center, you’ll know your HIV status. And you’ll receive post-test counseling with advice about how to live with a positive diagnosis or how to maintain a negative one, depending on your result.

Some people are accessing VCT. (It’s free in most places.) Other people are not. What are some of the barriers that prevent people from getting an HIV test?

• Lack of Access to Drugs - If you lived in a place where life-prolonging ARVs were not available, would you want to know your status? If you thought being HIV+ was a death sentence, would you want to knowingly give yourself that sentence? You know the old saying, ignorance is bliss.
• Stigma - The stigma surrounding HIV is still high. If you knew your family might kick you out of the house, or that your church might ask you to worship elsewhere, would you want to know your status?
• Worries about Confidentiality – In many communities, people know each other well. There is some fear (often unfounded, but fear nonetheless) that counselors or lab technicians will disclose the status of their patients. Many fear that their test results will not be kept confidential.
• Access to Testing – Most urban centers have great testing facilities. And a lot of them. But a lot of rural areas have very limited testing facilities, or none at all. In many parts of the world, the vast majority of people still live in rural areas. In some countries, up to 80% or more of the people live in rural areas. If these areas do not have testing facilities, we are missing a huge opportunity to test people.
• Long Lines at VCT Centers – It takes a lot of courage to go get a test. You need a test when you want a test. As with many things in life, the moment and the courage to act boldly may pass. If you sat in a room for 3 hours thinking about the impact a test could have on your life, would you still have the courage to go into the counseling room when your name was called? (I tried to go to a free VCT center when I lived in Botswana. The wait to see a counselor was about 3 hours. So I left without getting tested. A few weeks ago, I went to get a test in Pennsylvania. There was no wait to see a counselor. But I had to wait 336 hours for my results. I’m not sure which was worse.)

So, back to what’s happening here this week. It is said that 90% of people who are infected with HIV are not aware of their status. This is of course a major problem because:

• People may continue to infect others, not knowing they are doing so.
• People are unable to get the medications and nutrition they need to deal with the illness.
• Women, nearly half of all people with HIV, are unable to prevent the transmission of the virus to their children if they don’t know they’re infected.
• Governments and health workers are forced to develop policies to address HIV/AIDS based on sometimes shaky estimates, since they don’t know actual numbers.

I’m not sure I believe this 90% number. No doubt, a lot of people don’t know their status. But the 90% number was being used four years ago. Since that time, there have literally been thousands of new testing sites that have opened up around the world. These centers are being used by a lot of people. The numbers of people tested have gone up significantly. I’d like to think that more than 10% of people know their status. I think we’ve made a lot of progress on the testing front, so I’d be really discouraged if 90% of people still didn’t know their status.

One of the hot topics here this week has been the notion of scaling up testing. If more people know their status, those who are infected can access care and treatment and we will have the chance to prevent new infections. We all agree that more people need to be tested. The disagreement comes when we talk about how to do it. This week, some are suggesting that we make testing less voluntary and more mandatory.

In workshops this week, experiences have been shared from Botswana, Malawi, and other countries. These are countries in which the AIDS problem is massive. There is a true, immediate crisis in many of these countries. New people continue to be infected and few people know their status. Some governments have found it necessary to take new measures – extreme measures – to ensure that people know their status, access treatment, and prevent new infections. Malawi and Botswana have tried compulsory testing programs. In these programs, unless patients specifically state they do not want to be tested, they will automatically be tested whenever they enter into a government-run medical facility. Thousands of new people have been tested through these programs. Government health ministries have a better handle on the nature of the epidemic in the country. More HIV positive people are able to access counseling, care, and treatment services. Pregnant mothers are able to lower the risk of transmitting the virus to their children. Those who learn they are not infected are able to take steps to ensure they stay that way.

But there is another side of the coin. What about human rights? Can we force people to be tested? Can governments make this decision for people who may be fearful of testing? Are we taking away people’s rights?

It’s an interesting debate - one I go back and forth on. How do governments balance a need to save and serve the masses with a need to respect the rights and choices of an individual? In the end though, I’m not sure this debate covers some of the real barriers to testing. Do we want to encourage testing in areas where treatment is not available? Are we ready to tackle stigma head-on and ensure that as more people are being tested, it won’t simply mean more people being stigmatized? And coverage around the world – especially in the rural areas – is a real challenge. Without the funding, facilities, testing supplies, and qualified personnel needed to scale up counseling and testing services, will we really be able to increase the ability to test – voluntary or mandatory?