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

By Kellee Terrell

October 9, 2012

"If I had to pinpoint a couple of things that AIDS has really affected," Rae Lewis-Thornton recalls, "it would be my career and, thus, my financial situation." Rae was forced to take a step back from her burgeoning political career when she made her transition to AIDS -- and like many long-term HIV survivors, she didn't think she would live very long so she didn't save money. Now, paying for the meds that keep her alive is a constant worry. "The bottom line is, AIDS is a burden." Watch the other videos in this series.


Inspiring stories of people living with HIV.


Did you ever seek support from support groups?

I tried the support group at County Hospital one day. And honestly, I was so traumatized when I left the support group, I never went back. Because I was at the free clinic; beyond HIV, I felt that I had nothing in common with the women that were there. I'm just being honest.

I've interviewed a lot of people who've felt the same way, about coming from a different background from others in their support groups: If HIV is the only thing that's bringing you together, that doesn't mean that you'll have similarities.

Right. I didn't do anything in those first years. When I made the transition to AIDS, I did private therapy; and then I tried to do group. It was a really short time span from then to my becoming famous. So I had to begin to create a private space for myself.

Especially your business.

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Absolutely. Being so public with HIV -- even at the clinic, if the door is cracked and someone sees me in there with the doctor, they may push the door open and say, "Hey there, Rae. I saw you on TV the other day!" You know, and it's like, whoa.

You can't have that.

I can't have it. I don't have a lot of private space. But you know what? I know a lot of women that love group. It is the one time where people can come together in camaraderie, get hugs and share. I have a support system of friends that I can share with.

How has living with HIV impacted your finances, as far as paying for medication? A lot of people have to be on disability, and can't go to work.

Prior to making the transition to AIDS, I spent my first 12 years in politics and, in those latter years, as a senior staff person. I was the national youth director for both of Jesse Jackson's presidential campaigns. I was climbing the political ladder, so to speak. And I was starting to make really decent money for myself.

My first snag was when I left a job that I was working at to go work for a political candidate in a very high-up position. I lost my insurance and my ability to get insurance. Because most of these campaigns are short, they don't offer insurance to their staff; they just pay you. When I went back to try to do not-for-profit work, no one would insure me. So I lost my insurance. That's how I ended up at County Hospital.

But when I made a transition to AIDS, I was expected to die. The life expectancy was three years. We could see progression toward death -- and so, of course, I applied for disability, which was a lot easier back then to get on. You know, you get a disability check. I was on SSDI (social security disability insurance), which is the system that you pay into.

"People see me on TV and see me in magazines; and they think that's glamorous. Well, first of all, all press is free. ... I got a thank you letter for being on the cover of Essence magazine."
I got a disability check that, even though it was more than what people would usually get with SSDI -- because I had paid into the system; I'd been a working woman all my life -- it still was nowhere near what I was accustomed to. When I went on the speaker circuit, obviously, I did make good money. But I spent more money than I made, because I thought I was dying: "What the hell, who needs savings?"

It's been a hard life. People see me on TV and see me in magazines; and they think that's glamorous. Well, first of all, all press is free. That's the first thing. I got a thank you letter for being on the cover of Essence magazine. I do the work, not to be on TV; I do the work to deliver the message. And so this has been really, a really hard life. It's a hard hustle getting people to pay you to speak. I've gone through periods where I didn't know where my next meal was going to come from, or how I was going to pay my rent.

In the last three years, I've had to downsize my life because I was hit very hard by the economy. I went from a three-bedroom to a studio. My prayer was, in that second year in that studio, "Lord, can I please just have a one-bedroom? Because I can't look at my bed anymore."

Health insurance is still tricky. My medicine is about $8,000 a month with Medicare Part D -- which is the plan that George Bush put into the system. My copay is $2,400 a month. Thank God there is a system in Illinois that pays my copay. I worry about that, because that was put in under [former Illinois Governor Rod] Blagojevich, who went to jail. And so a lot of his policies are being shifted.

There is a possibility that I may have to foot a $2,400 copay a month. And ADAP (AIDS Drug Assistance Program), the way it works: If you qualify for Medicare Part D, ADAP will not insure you. And then with ADAP there's a waiting list in many states anyway. So I become a catch-22 there, where I don't quality for the national and state federally funded ADAP program that gives you HIV meds, but I qualify for Medicare Part D ... but it doesn't pay.

The bottom line is, AIDS is a burden.

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.

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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 TheBody.com and TheBodyPRO.com.

Follow Kellee on Twitter: @kelleent.


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