This Positive Life: An Interview With Rafael Abadia
September 15, 2011
Which HIV med regimen are you taking now?
I take Norvir (ritonavir), Reyataz (atazanavir) and Truvada (tenofovir/FTC). Once in a while I get some diarrhea, but it's the easiest regimen I've ever had. I take it once a day. On some regimens, I had to carry medications with me all the time. I'm very satisfied with this regimen. I've been on it since before I moved here and it's been five years now, so six or seven years on the same regimen, and I've never missed one dosage.
How do you remember to take your medications?
I change methods from time to time. I have my big pill organizer for the week, so I just put my meds and my vitamins in there once a week and it's easy. But sometimes I get bored of that, or I just get tired of seeing all the pills together, so I go back to just taking them out of the bottle. I'm pretty good at it. I don't really have an issue.
If I ever get into a pity party, feeling sorry for myself and going, "Oh, I have to take these meds," the first thing I think is of those people who can't take them. I think of the people on the ADAP [AIDS Drug Assistance Program] waiting list who have no access to medications or are struggling to get medications. It's like a slap in my face to wake up and just take my medications. That's how I deal with those days when I don't want to take my medications.
Florida has the highest rate of people on ADAP waiting lists. A lot of agencies are happy because we have PAPs -- patient assistance programs -- but because I deal with so many consumers, I know that sometimes the medications are either sent to their case manager's, to their doctor's office, or to their homes. Sometimes they'll get two medications and one is delayed, so they're taking those two medications alone until they get the third one, which is not good. So people like to praise the PAPs, but I'm very concerned about that because some people have fallen out of the system.
Another concern is that some people who are on ADAP and miss their appointments are kicked out of ADAP. These are already the "hard clients" -- they used to only have to go to one place to pick up their medications and now you have them going to two or three different sources to get their medications. If they had trouble getting their medications at one location, it's gonna be more of a problem at several locations. That's what I've been fighting down here for.
How do you find the energy to do this kind of work while managing your own health? Does it ever feel like it's "all HIV, all the time"?
I have to be honest: Sometimes I get exhausted with the involvement. People tend to be very timid down here about advocacy, specifically consumers. I'd wanted to slow down a little this year but I convinced myself that, because of health care reform, we need people in place that really know the system, that know Ryan White well, to prepare ourselves. There are so many changes occurring, so I'm going to give it an extra five years and reevaluate my involvement. I'll always be involved, one way or another, but right now I'm very committed. I do get tired from time to time. I wish we had other younger advocates taking over -- I am getting older! [laughs]
What do you think keeps younger advocates from stepping up?
I got to see the "dirty side" of AIDs in the '80s and '90s; younger people really haven't. I don't think they see the urgency. It's very sad too because we're getting a lot of new cases of HIV among youth.
Here in Palm Beach we're planning a basic 101 HIV advocacy training for youth. So hopefully we'll get some new advocates into play.
It's funny: My mom works with a ministry that goes to the Dominican Republic to take food, medications and so forth. She always wanted me to become a minister of some sort. I always joke with her and say, "Mom, this is my ministry." We all have a calling, so it's worked for me.
What role do church and religion play in your life?
An important one to some extent. You hear people say HIV/AIDS is a punishment from God. Believe me, I've heard everything. I like to believe I have my own relationship with what I call my higher power. And it's a good one. No religion, no one person, no matter what they say, or how they interpret things, could ruin the relationship I have with my higher power. Sometimes I like to say, "She is fabulous." [laughs]
Is there anything else you want to share with our readers?
We started Florida HIV/AIDS Advocacy Network -- it's an advocacy group for providers, government officials, consumers like myself, and we're doing advocacy on a state level. I'm also active in the ADAP Advocacy Association (aaa+). I go to all their conferences. Like I mentioned earlier, I wish we had more people in this fight -- more young people and women coming into play to do more advocacy.
If you're fortunate enough, as I am, to be out there advocating and being open about your HIV status, and it doesn't harm you in anyway, please do it. It makes people aware of HIV. It shows people that we come in all forms, all shapes, all sizes, all colors. It's something we all have to work together on. So, if you're able, please, speak up.
Thank you so much.
This interview originally took place in June 2008, and has been revised, updated and edited for clarity. Additional reporting was provided by Olivia Ford, the community manager for TheBody.com and TheBodyPRO.com.
This article was provided by TheBody.com.
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