The Body: The Complete HIV/AIDS Resource Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App 
Professionals >> Visit The Body PROThe Body en Espanol
HIV/AIDS Resource Center for African Americans
Kai Chandler Lois Crenshaw Gary Paul Wright Fortunata Kasege Keith Green Lois Bates Greg Braxton Vanessa Austin Bernard Jackson

Rae Lewis-Thornton: A Diva Talks About the Cost of Living With HIV (Video)

October 9, 2012

 < Prev  |  1  |  2 

Now, people see me on TV, they see me doing these things, and they're like, "Well, why can't you go to work, girl? Get back out there and work!" The fact of the matter is that I never know. First of all, I have chronic fatigue. There are some days I wake up feeling like I haven't even been asleep. And then I never know when something's going to happen.

Hypothetically, if you've got a good T-cell count and a great viral load, then you shouldn't have any infections; you shouldn't have anything serious. But the reality is that AIDS is not that simple.

Especially when you've been living with it for a really long time.

I've been living with it for a really long time. So my immune system is zapped out. I got a boost from the regimen that I'm on, but the part of my immune system that's died is dead, and it will never be revived again.


I just did 30 days of IV meds, twice a day, two hours a day. How can you keep a job in that regard? And prior to that I did six months of IV meds where I would do it once a week. The first three days of which I'm pretty much zapped out. Then I bounce back. And the last three days, by the time I bounce back, I have to go back in to get an IV treatment to treat an infection.

It's been the biggest loss for me, financially. It's been one of the biggest losses. If I had to pinpoint a couple of things that AIDS has really affected, it would be my career and, thus, my financial situation. I mean, you have to understand the people who were my peers: [Veteran Democratic strategist] Donna Brazile, for example, was my peer. So, my career, and from that, the loss of my finances.

And then my physical appearance, which sounds shallow to some people, but for people with AIDS, you get it. My lipodystrophy, it distorted how I looked. And I thought I looked just fine.

And so those have been my two greatest [losses].

It's really hard. Even for people that don't speak for a living. I hear it from women in the clinic: They don't get enough disability to actually even get public aid.

"Do you know what it's like to go to this agency that's supposed to help you, and you know your lights are getting ready to be turned off, and they say to you, 'Your disability check is $30 too much'?"
I remember two years ago, when I hit rock bottom. And girl, I pulled myself together and went down to CEDA (Community and Economic Development Association of Cook County): "I'm going to get my light bill paid for!" My disability was $30 too much to qualify to get my light bill paid. My lights were turned off. The only way we got my lights back on was, my doctor sent in a letter of emergency. That was a 30-day reprieve. My heat is paid in my electricity, so the bills are higher in Chicago in the wintertime. I had to figure out within those 30 days how to get that $400 to pay.

Do you know what it's like to go to this agency that's supposed to help you, and you know your lights are getting ready to be turned off, and they say to you, "Your disability check is $30 too much"?

And, wait. It took a lot for me to go there. Because proud people never ask. We try to figure it out on our own.

How are you doing now, financially?

It's still rough for me financially. Honestly, I went from five or six speaking engagements a month to five or six speaking engagements a year.

I haven't had a speaking engagement in three months. So it's been hard. But what it's also done, honestly, is it's forced me to stretch the money a little bit longer. It's taught me that I don't need as much as I think I need.

And I have friends. My girlfriend Markeeda bought Peapod for the last three months. If she had not bought Peapod, I would not have groceries. So I'm grateful for what support systems I do have.

I continue to do the work, even though I'm not getting paid for the work.

Kellee Terrell is the former news editor for and

Follow Kellee on Twitter: @kelleent.

Copyright © 2012 Remedy Health Media, LLC. All rights reserved.
 < Prev  |  1  |  2 

More From This Resource Center

Magic Johnson Wants You to Know: He Isn't Cured of HIV

Living With HIV? African Americans Share Their Advice

This article was provided by TheBody.

See Also
Rae Lewis-Thornton: A Diva Talks About Living With HIV/AIDS (Video Series)
More on the Economics of HIV Care

Reader Comments:

Comment by: Michael (North Carolina) Sat., Nov. 21, 2015 at 7:53 pm UTC
Something is not passing the smell test regarding HIV anti retroviral therapy.

Since we are to believe ‘the cocktail’ renders the virus infertile, incapable of replicating, thus reducing the viral load to undetectable levels by the most sensitive, scientific lab tests known to mankind, how is it possible the viral load can increase again if the therapy is suspended? Stabilized at undetectable, yes. Increase? SMH.

Which is it? Is the virus incapacitated or not on anti retroviral therapy? Is there a hyper immune mothership hidden in the body producing new, fertile HIV viruses, like in the movies “Alien(s)”? If not, and the original invaders cannot replicate (or die), from where are the new, fertile viruses being birthed?

Simply stated, is the HIV virus self-repairing to its fertile state without the barrage of profit generating pharmaceuticals, and the medical community does not want to publish it?

$2600 a month for HIV’s Atripla, paid for by insurance and BMS, or the State ADAP waiting lists?

With all the lives saved since the late 80’s, we shudder to think the world is being bamboozled, but something is not adding up. Why should people even consider PrEP any more effective against HIV than Centrum is against the rhinovirus?

Please explain.
Reply to this comment

Comment by: Kathy (South Dakota) Tue., Jan. 8, 2013 at 7:27 pm UTC
Thank you for spotlighting the financial burdens of trying to pay for HIV meds; I have lived with a similar situation for many years. A couple of years ago, Oprah made a comment on The Oprah Show that suggested that HIV was easily controlled. I e-mailed the show stating that people not able to afford the med cost was causing many deaths in the U.S. each year, and I suggested that she consider a feature segment on the problem. I never heard back from her staff. I hope that continues to address this issue, as it continues to be not only a physical challenge, but an emotional one as well.
Reply to this comment

Add Your Comment:
(Please note: Your name and comment will be public, and may even show up in
Internet search results. Be careful when providing personal information! Before
adding your comment, please read's Comment Policy.)

Your Name:

Your Location:

(ex: San Francisco, CA)

Your Comment:

Characters remaining:


The content on this page is free of advertiser influence and was produced by our editorial team. See our advertising policy.