More than a quarter of all new infections every year are in young people between ages 13 and 24 — and more than half of those youth infected don’t know it. Hardest hit are African Americans — 57 percent of people in this young age group.

In advance of World AIDS Day on Saturday, The California Report’s host Rachael Myrow visited Larkin Street Youth Services, which helps homeless teens get off the streets and get tested for HIV. She talked to two women who manage programs at the organization.

Here is an edited transcript of their discussion:

LARA TANNENBAUM, Larkin Street’s housing programs: The majority of our youth have experienced a severe amount of abuse or neglect in the home, parental substance use, perhaps a lot of poverty in the home where families weren’t able to care for them. Many of our clients are LGBT and their parents asked them to leave because of their sexual orientation. So people really become homeless for a variety of reasons.

RACHAEL MYROW: How do you start a conversation with a teenager about HIV/AIDS?

RAE SUBER, Larkin Street’s HIV testing & prevention program: Getting a client to consider testing is like getting them to consider medical care in general. Usually there’s a crisis. They think they might have a sexually transmitted infection. They think they might be pregnant. They think their partner might have an infection or be pregnant, and they’re concerned. So they come in and, if testing is indicated, we’ll recommend it.

RACHAEL MYROW: What is it that stands between a young person who may be homeless or may be insecure about their housing situation and medical care in general? 

LARA TANNENBAUM: There are a lot of barriers that prevent young people from thinking about HIV prevention and testing while they are on the streets.  Just meeting basic needs is really the primary thing on most of our youths’ mind — finding a place to stay for the night, having food.

In addition, the things that youth have to do to survive for the night on the streets put them at higher risk for HIV. Many of our youth engage in what we call “survival sex,” trading sex for food or a place to stay, or even money. Very often in those interactions, youth are not able to negotiate safer sex, so that puts them at risk for HIV. Many of our youth on the streets are using substances as part of their coping mechanism. They may be using intravenous drugs; they may be sharing needles. That puts them at risk for HIV. So there are a lot of risk factors for homeless youth as well as a lot of barriers to getting them tested. 

RACHAEL MYROW: There have been a number of reports that point to new infections coming primarily among men and teenage boys who have sex with other men and teenage boys — and new infections are high among African Americans. Have you decided to tailor your programs any differently, in light of these reports, or is it just something you bear in mind as you do your work?

LARA TANNENBAUM: The statistics are really alarming nationwide. The disproportionality of HIV infection is really concerning. If you are a young person, if you are a man who has sex with men, if you are a man of color who’s a young person — who has sex with men — you are at extremely high risk of HIV in the United States, and we see that in our programs. Of the 70 to 80 HIV positive youth a year who we serve, the vast majority are young men of color who have sex with men.

RACHAEL MYROW: If you’re a traveler, if you’re having sex in circles where there’s already a higher incidence of HIV infection, you’re at a statistically higher risk.

LARA TANNENBAUM: Absolutely. Part of what we try to do when we identify someone who is positive is encourage them to have their friends get tested. We’re very much aware that homeless youth in particular are travelers and do tend to have social networks, and there’s a lot of potentially drug use and/or sexual partners within those networks and so the risk can be very high in those networks. We do see sometimes youth who come into our program for positive youth, we have had occasion where a young person will come in, and then a friend comes in, and then another friend comes in, so we’ve actually see that play out.

Listen to Rachael Myrow interview Lara Tannenbaum and Rae Subaro:

(gernhaex/Flickr)

Saturday is World AIDS Day, a time when we take stock of where we are globally in the fight against the disease and — according to its mission – show support for people living with HIV.

KQED’s Joshua Johnson had an unusually moving way of going about showing support on this morning’s air. He interviewed our colleague Mark Trautwein, editor of KQED’s Perspectives series. Much to my own surprise, Trautwein has been living with HIV, as Johnson describes, since a time when diagnosis was thought to be a death sentence.

Johnson wanted to explore the cost of the disease — not its emotional toll, but real dollars. Their four minute interview this morning was one of those times where you just stop and listen. And reflect. And peer right into someone else’s life.

Trautwein is one of 1.2 million Americans living with HIV/AIDS. As a health reporter, I find total treatment dollars are so huge they’re sometimes hard to grasp. But Johnson and Trautwein put a very real face on what it costs — from check ups to blood tests to endless prescriptions — to stay alive.

What follows is a lightly edited transcript of their conversation. But if you can, please listen here to the longer version. You won’t be sorry:

Joshua Johnson: Mark, give me some examples of how much you spend on your medications. What do you take? What does it cost you with insurance, and what would it cost retail without insurance?

Mark Trautwein: I currently take 11 prescriptions drugs, a number of over the counter drugs, and some vitamins as well. If I did not have insurance, the retail cost of those medications would be about $45,000 a year. I pay approximately $1,500 a year in co-pays for those medications.

Joshua Johnson: What kind of insurance do you have?

Mark Trautwein: I’m a retired federal employee, so I have my insurance provided through the federal government. I have a Blue Cross/Blue Shield, a kind of standard fee for service plan.

Joshua Johnson: How often — if at all — has paying for all of this care become difficult or unnerving?

Mark Trautwein: Part of the definition of living with AIDS is that you’re uncomfortable. You’re not certain about anything. The future doesn’t really belong to you. It’s one of the other costs, by the way, of this disease is you lose sense that the future is something you can rely on. You’re always uncertain. You never know whether that infection you have is just another flu, like anybody else gets, or whether it’s a dagger pointed at your heart.

Joshua Johnson: There are also other costs that go along with your HIV-related care — generally with being healthy — doctors visits and blood tests and so on. Even for a relatively healthy person with insurance, a single blood test can be $300-400.

Mark Trautwein: Then there’s also the costs of the associated conditions that you may acquire as part of your course with HIV. A big issue for me has been cardiovascular disease that has been totally related, in my case, to having HIV and taking the meds for it. That’s put me through five angioplasties over 12 years. Each one of those angioplasties costs up to $60,000. Each one of those, I pay only several thousand dollars each, because I am insured. But the costs of not just your medications, not just your doctor visits, not just your blood tests, but the associated diseases and conditions that also have to be treated can be quite enormous and unknowable until you enter into them.

At this point, time forces Johnson to wrap up the interview, thanking Trautwein and reminding listeners that Trautwein has lived with HIV for 30 years. Mark Trautwein’s reply, in an upbeat voice, gave me goosebumps.

“I’m just happy to be here,” he said.

More:

Read Mark Trautwein’s New York Times Op-Ed piece, Death Sentence that Defined My Life.

If you’re living with HIV — or another costly chronic illness — share your story with us.

Workers hang a red ribbon on the White House before World AIDS Day, 2011. Chip Somodevilla/Getty Images

Living with HIV is not cheap. Earlier this year NPR reported that monthly HIV treatments can cost between $2,000-$5,000 and that the lifetime cost of treatment is estimated at more than a half-million dollars. While public assistance programs can help cover some treatments, some people still find it a challenge to pay for the drugs they need to survive.

In advance of World AIDS Day this Saturday, KQED wants to know how the cost of treatments has affected people living with HIV. If you’re HIV positive, you can help inform our reporting by filling out the form below. The information you provide may be used in a future blog post or in our reporting on radio, unless otherwise noted.