Damaries Cruz: Deciding to Start Treatment After Nearly 20 Years of Living With HIV
March 30, 2011
It sounds as if you've found the things that really help you get through the challenging times.
When you're alone, you have to find a way. There's no other way. I'm not going to call my 80-year-old mother in Puerto Rico, crying, "Oh, Mom!" I don't want to do that to her. So, yeah. I have great people here that I can talk to. And I cry a lot, as usual. I let it out, and then I can think clearer. I wanted to hide under the sheets the first week, because I was so nervous. But then I was fine.
Now, this year, I'm celebrating 20 years since I was diagnosed with HIV. Like I said, in my earlier interview, I cut a cake every year on Nov. 23. And this year's going to be big. I'm doing a party-type thing. Last year, I made dinner and friends came over, and we had cupcakes.
Every year, I make sure I do something. Because every year is a blessing. I didn't know I was going to be here.
It's a new life for me. It's different. I'm waiting to start to feel better, because I still have my plans. I'm going to go to school. I'm working on new projects with local channels from here, and other things. Great things are coming. I'm very excited.
You spoke earlier in the interview about the financial times being really challenging. How do you access your HIV meds? Do you get them through ADAP [AIDS Drug Assistance Program], which has had a lot of funding problems recently, especially in Florida? Or do you have Medicaid? How do you access your care?
ADAP here: It's horrible. They've already started closing offices, and there are waiting lists. I've been thinking about and talking to people about how to raise money to help people that don't have medication. So I'm working on that.
I had Medicaid, just for a few months. I don't understand it very well. I had private insurance for many, many years. I used to work in corporate America. When I stopped working there, they gave me an individual plan. An organization from the community pays, thank God. Because when I was working in the health department, I didn't have any benefits. I had insurance all this time because of this great organization -- I'm going to give it a plug right now -- the name is Broward House. They are awesome. Broward House has so many great services. I love this organization, honestly. They help the client a lot. They have something called AICP, which is AIDS Insurance Continuation Program. I had it when Center One used to be running. Then Center One closed, and Broward House got my case. So they pay for it. And it's been great.
Medicaid was only for a few months. I didn't even know I had it. It finished this past January. And when I called the Medicaid office, they said, "Well, you're going to have to call private insurance to see if you can get insurance. We cannot help you." I said, "Excuse me?" And they said, "Well, you make too much money." I started laughing. I'm like, "Are you kidding me? I'm on disability. Are you serious? How much money do you make?" Then she said, "Well, you can receive Medicare in March 2012." I said to her, "Lady, I can be dead by then." And she said, "I'm sorry, I can't help you." Click.
The private insurance: I still have it, but I just found out a few weeks ago that it's going to finish in a few weeks! Because they sold the company to a private I-don't-know-what. And now I'm trying to get insurance. I just started doing that, because I haven't been feeling good. I don't have the energy to talk to people on the phone. And do you know how many denies I get on the phone? Or, "Oh, no. We don't have anything to cover you." Then I have to go into, "I'm protected by the Florida statute so-and-so-and-so." Because what happens is you are protected by HIPAA. HIPAA guarantees you certain policies for all the insurance. A lot of clients don't know this.
You cannot give up. And even though, let me tell you, I feel like crap, I'm going to fight these people. Because they have to give me insurance. In 2006, I had to sign for AICP, and I had to find an insurance company. I was at Center One with my case manager, who was on speaker phone with the insurance companies. They didn't know I was there. One of the insurance companies told my case manager, "Don't you know? We don't insure this type of people. These are the walking wounded." I just smiled. I said, "Don't you know that I'm going to call the insurance commissioner's office right now?" And they hung up the phone.
I could have gone on. But I didn't want to waste my T cells back then. But right now, I'm taking the medication, so I can. You can't be quiet. You need to open your mouth and just have the courage to fight these people.
Do you have support from the folks at Broward House to find new insurance? Do you have a case manager or someone who's helping you in the process, and knows all the different avenues?
I have the coordinator of the program helping me. He's been great with me and has told me what to do. He even printed a list of the insurance companies that I can call. Broward House will write me the check for the insurance, but the first step is me calling the insurance companies and finding out how much are the copays and everything, and if I can afford it; because with the private insurance, I have to pay the copay for the medication.
If you hear something about a crazy, HIV-positive woman, who cursed out someone on the phone for insurance, or did a rally in front of the insurance company ... it's me. [Laughs.]
It'd probably be you along with a hundred other people who are in similar positions. You are certainly not alone! And you're opening your mouth and doing what you need to do, which is amazing. I wish you the best of luck in that challenging process.
Thank you. [Editor's note: In the weeks following this interview, Damaries was able to secure coverage through Florida's Medicaid "Share of Cost" program until she's able to receive Medicare in 2012.]
What advice would you give to someone who's thinking about starting HIV meds now?
Don't listen to anyone but your health. You gotta listen to your gut and be honest with yourself and your body. Your body, I swear, is going to tell you, "I need help." And you're going to feel it.
You don't need to follow my example. I get people that write to me because of the other interview we did a few years ago. They ask me, "Do you recommend that someone that just turned positive do what you've done?" I always say no. This is what I decided to do. It's my body, right? My temple. So I manage my temple the way I want to. Now, I manage my temple the way I'm guided to -- because I learned to listen to it. I'm here telling people, "I listen to my temple. This is my temple." But I didn't take the time to really listen, and my body needed help. I beat it up, and beat it up, and beat it up, until I couldn't beat it up anymore. But I don't recommend that to anyone.
You have to listen to your body; do your research; and have a great relationship with your doctor. If you don't like your doctor, move on. Look for someone else. Because you need to feel comfortable with your doctor. That's so important: to feel comfortable with your doctor, to be able to say, "No, I don't think I want that." Or, "What do you think I should use?" Or, "What do you think is better for me? Because my T cells are so low, or whatever." Or, "Because my T cells are here, is this going to really help me?" Those are the types of questions and conversations you should be having.
And have a great support system -- at least one person that you know you can count on, that will be there for you if you need someone to cook something for you, if you need someone to come and even give you a bath. Have that person that you trust.
Don't be scared to take the step. Don't be scared. If holistic stuff and other things are not working, you need to help your body some other way. Just look at it this way: Medications, even though they have a lot of chemicals in them, some of them do come from plants. They do have some herbal things in them -- it may be tiny, tiny milligrams, but they're there. And you can research that.
Just don't be scared to do it, and help your body.
You've mentioned a few times during this interview that you've received some negative responses to some of your online interviews from people disagreeing with your choices about taking meds. Can you talk a little bit about the responses in general? Is there anything you want to say in particular to those who may disagree with your views?
I've been humbled and honored by so many people that posted something on my prior interview and by the ones that send me e-mails directly. I've been able to make friends all over the world; I've been able to give hope, options and courage to others. These e-mails and comments helped me during so many moments when I felt my world was crumbling. Knowing I might be able to give hope to one person or keep one person from getting infected gives me healing -- it closes the circle, so to speak.
There are people that might like conflict; or maybe they are so scared that they feel the need to criticize what I say or do. All I have to say about that is: I'm sharing my story and the way I feel it and go through it. Why are you projecting yourselves on me? At the end, we are all mirrors of one another. It doesn't matter to me; what others have to say about me is not going to stop my healing.
Thank you so much, Damaries! It was wonderful talking to you. I'm so glad we got to do this update.
This transcript has been edited for clarity.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.