Like many who have worked with the HIV/AIDS community, Noel Twilbeck, executive director of the NO/AIDS Task Force in New Orleans, started as a volunteer in the late 1980s. He has served as executive director for the past eight years and has witnessed firsthand how the public's perception of the disease has changed throughout the past two decades. Today, many people erroneously believe that HIV/AIDS has been conquered and that overcoming HIV only requires taking a daily pill or two. Twilbeck wants the public to know that assumption is far from the truth.
Q: What do you consider the biggest misconception regarding HIV and AIDS?
A: The foremost we hear from young people is the belief that this is all under control now. Either that there's a cure because people have medication, or that the medicine keeps everything under control and it's not an issue. If they become infected, all they have to do is get on the pills and everything will be fine.
There's partial information there. There is a lot of good news with medications and therapies that are available; we are able to help control the viral load (concentration of the virus in the blood) and the T-cell count (certain white blood cells that protect the body against viral infections) for many people with effective medications. What people don't understand is that not everyone thrives on these medications people can become resistant to the drugs and classes of drugs. There could be many side effects that have to be managed as well, things like persistent diarrhea, that hamper the quality of life. We're still far from a cure, and we're still far from it being manageable for everyone. Medication is also very costly.
Q: Do insurance companies pay for medication?
A: They can and many do. We're not seeing insurance companies saying that they're not going to pay for HIV care, but sometimes they say it's a pre-existing condition and insurance cannot cover it. If a person has insurance coverage for the HIV condition and they move to another insurance policy, the insurance companies aren't excluding HIV these days.
Q: What about people without insurance?
A: For many of the federally funded programs, it's based on income, so if you're at or below a certain percentage of the poverty guidelines, you qualify. For instance, if your income were at 200 percent (or lower) of the guidelines, you would get your HIV medications. If you're at 201 percent, making $20,000 a year (the cutoff is $19,600), then you can't qualify. Your insurance could cost more than you make.
Q: With the advances in HIV/AIDS medication and treatment, do you think it has become a forgotten disease in the United States?
A: I think it's been pushed to the back burner for a lot of people. After Magic Johnson made his announcement about being HIV-infected (in 1991), that's when everything changed. Hotlines started ringing left and right, and people came in for testing. The media took hold of it, and fundraising and awareness events skyrocketed. There's fatigue now; we've dealt with this epidemic for many years now. There are other diseases that have gotten more highlighting over the past years. That's not a bad thing it's just that a lot of attention has been drawn away from HIV.
Q: Is the infection rate still high?
A: We have not seen a decrease in the number of new HIV cases in many years. It's been estimated that there are 40,000 new cases of HIV in the United Sates every year. The deaths have dramatically dropped off, so we have a lot more people living with HIV than we had in the past.
Q: What are the figures for the New Orleans metro area?
A: As of September 2007, there are 5,569 persons living with HIV in the New Orleans region. The demographics have shifted a bit. We're seeing a lower percentage of African American individuals, and a lot of that is attributed to people not being back in the region (since the storm).
Q: Do we have adequate services for those infected?
A: Services are back up and going medical and supportive services. We've had some difficulties with specialty referrals. That's better now; we have more specialists available in the area. Although things look better than they were months ago, if someone calls today and asks about returning to New Orleans, we're going to ask them to think about a couple of things. One, do you have a job, income, and do you have housing? Two, how sick are you? If you're sick or in medical care, you might be better off staying where you are until you get healthy because we're still concerned about some specialty areas. If you don't have housing, don't come in and expect that we'll be able to find housing for you because that's a challenge for everyone.
Q: In 1996, when medications were introduced that made HIV manageable and not a death sentence, the results were miraculous. At the same time, these drugs have brought their own set of problems. How so?
A: Side effects can still impact quality of life for a long period of time. If a person has diarrhea for a couple of days or a couple of weeks even, they can live with that. But if you recognize that this (diarrhea) is going to be persistent, as long you take this medication, then that becomes a bit daunting. We have other medications that increase the cholesterol level, so for a while we had people dying of heart disease. Now we know to look for it, and some meds are better at managing that than others. But not everyone is able to take those medications. This is poison that you're putting in your body. These drugs are very potent and powerful against HIV, but they're going to affect other things as well.