Ed Barron Is Not HIV Positive, He's a Person Living With AIDS and Complications
May 2, 2014
We're going to switch tracks to talk about your health. Actually, you have talked about what your health has been like since your diagnosis. But can you talk about how you found the HIV specialist that you have now, and what your relationship is like to your doctor?
I have gone through many HIV doctors. Joseph Cronin, who was world-renown, was my doctor in San Francisco. Hated him! Sorry.
The doctor I had here in New York when I tested positive I was turned on to accidentally by my roommates.
He was a wonderful man, and I watched him nurture my friend until my friend died. So I was blessed.
So I had this doctor here in New York, Daniel Brook, over on West End Avenue. I moved to Philadelphia and I got hooked up at University Hospital down there. I had a wonderful ID doctor down there.
Then I moved to San Francisco, and I had Dr. Cronin, but I didn't like him, because he was big business -- because he was world-renown. He had this huge practice. I never really got to see him. But through him, I met this other doctor. And it wasn't the doctor; it was the physician's assistant. That was the case in Philadelphia, as well -- it was never the doctors; it was the physicians' assistants. It was the support team. They're the ones that tried to help me.
They all knew I had a problem with drugs. They kept asking me, "Do you think you have a problem?" Of course, I was in denial and I was saying, "No, no, no. I can handle it. I've got it under control." Meanwhile, I'm putting needles in my arm like five times a day.
I come back here, and there's a conglomerate of infectious disease doctors out where I live. I go, and they want to be the top 100 ID doctors in the country. That's their role. I'm not there for them.
They weren't centered on the patient.
Right. They were thinking: the prestige. Because they want to be leaders in HIV. Because, all of a sudden, there were a ton of ID doctors. Didn't mean they were all qualified; they were just caught. So it wasn't working for me. I had one of the five doctors in that group that I got along with really well. It was a female doctor. I seem to do well with female doctors. But it was getting old. It was getting harder and harder to make appointments with her because it was such a large practice.
And I had heard about this woman called Dr. Renee Frankel. She calls me her miracle patient. I went to see her. My insurance changed. I went out on disability. I was still HIV positive, but I was sick. I had second-stage syphilis. So I had to walk around with a pump for 10 days, getting IVs, and getting blasts every four hours. I switched doctors. I switched medical providers.
So I went to this new doctor. And the first day I met her, she looked at my chart and she said, "Aha. You're one of those."
I said, "What's that?"
She said, "You like to play by your own rules." She said, "I'm here to make you get well. If you want to die, go find another doctor." She said, "If you don't follow my instructions, I'm going to kick you to the curb."
It was like, "All right, I can deal with that." Because that's what I need. I need somebody that's not going to co-sign my crap. And she hasn't. She got me through some of the most difficult times that I've had physically.
After two-and-a-half years in remission they tell me, "You're as healthy as you're going to be." I go out, and I'm getting rejected because I wear diapers. It's like, "Well, screw this. I'm going back to what I know, where all they care about is how high I get." Right?
So I relapse, and I'm afraid to tell her. But I don't have any choice because I've done such a bad job that I wind up with all these bacterial infections and C. diff [C. difficile infection]. I'm in the hospital more than I am at home. And she's nurturing me. When I relapse and I tell her, I expect that she's going to go ballistic. And she doesn't say a word.
So the second time I see her, I say, "What's the matter? You didn't give me a hug."
She said, "I understand addiction, Ed. It's another disease. But that, I can't treat you for. That's self-diagnosed and you have to find your own way through that disease. I can treat you for hepatitis C. I can treat you for HIV/AIDS. I can treat you for every other physical malady. But I can't treat you for psychological addiction. You need help, and I'm not going to kick you to the curb for that. I'll kick you to the curb if you don't take your HIV meds."
So she's not only my physician, my infectious disease doctor, but she has steered me to a team of other specialists. I have the best team of doctors that anyone could imagine. And now I'm moving to Asbury Park, and all that's got to change. But through her, and her network, and knowing what I need, I'm sure the transition will be smooth.
That's great. What HIV meds are you on currently?
I also have to take Valcyte [valganciclovir] to prophylax for CMV, because I have chronic CMV. That was something that was found out when I had the anal cancer. I take Bactrim [trimethoprim/sulfamethoxazole], which is not an antiviral; but I have to prophylax for PCP, because my T cells are so low, and because I have herpes. So I take Valcyte for herpes and CMV. When my T cells go up over 250, I can stop taking Valcyte, because I don't have to prophylax for CMV. But I have to take Valtrex for the herpes. And then I have to take meds for my digestive system. So I take 18 pills a day.
Do you get to go off the Bactrim after you've hit a certain CD4 count, also?
Yes. The same thing with the Valcyte. Once I'm over 250 -- actually, for me, it's 200 because of my history -- once I get up over 200, then I can change the remedy; I can change the medicine.
What's your most recent CD4 count and viral load?
My viral load is undetectable. It has been for six months. My T cells, on the other hand, were at 210; then they went to 189; and now they're down to 149. I will see her next week and we'll try to figure out: Is it malabsorption, because of the stuff I take for my digestive tract? Because if I don't, I wind up with diarrhea, and then I wind up with C. diff, which puts me on antibiotics. So it's just -- it's a nightmare.
I get offended when I hear, "HIV is one pill a day." It is for those early detected. But for somebody that's been through the plague years, somebody that's had the virus since before protease [pause.]
I read an article today where a gentleman takes 32 pills a day. That's my story. It doesn't have to be everybody's story. A lot of young people don't want to hear my story because they consider it to be a war story. But that doesn't mean that it has any less validity. I'm grateful that the younger generation, the newly diagnosed, don't have to go through what I went through. But I also want to say we didn't know any better when this first came about. We were caught off guard.
How do you access your meds? Through private insurance? Medicaid? ADAP?
I have very good insurance. I have Medicaid, and Medicare. So I'm not impacted by the Affordable Care Act. The only reason that I have Medicaid is I'm on what they call the WorkAbility Program. As long as I stay employed, I will have Medicaid. If I stop getting a paycheck, then I'll lose Medicaid and then I'll have to apply for the Affordable Care Act, or ADAP -- I'm sorry, no; it's expanded Medicaid.
I have been on ADAP in the past. I've been on PAAD, which is the [Pharmaceutical Assistance to] the Aged and Disabled, because my income level would be too high. I've also utilized HOPWA, which is also Ryan White-funded, a housing opportunity for people with AIDS. In New York, it's called HASA, I believe.
In New Jersey, it's called HOPWA. But I've transitioned off of them because they are programs of last resort and I do my best to stay productive in society. I have part-time jobs. I don't like them, but I have them in order to be able to do what I want to do, which is come to New York, attend meetings -- ACT UP, TAG, VOCAL, all the groups that are leading the fight for people like me. Whether it's in New Jersey or New York, it doesn't matter. We're all in this together.
This is a cheap plug for Mr. Friendly. [Editor's note: Ed holds up the necklace he is wearing.]
You can hold it up a little bit. Yeah.
Mr. Friendly says that whether you're negative or positive, we're all in this world together. I actually have a pin for you, Mateo, if you'd like it. A friend of mine who is HIV negative fell in love with a guy that was positive. And for two years, all he heard was, "Why? Why? You're going to turn up being positive!"
And the guy that was positive kept hearing, "Why are you letting this guy get close to you? You're going to wind up converting him to being positive! Don't you guys have any morals?"
For two years the guy that was positive refused to let this guy in. But he was so persistent that they finally got together. They've been together seven years. And the one guy is still negative. Because they know the risks. They practice safer sex. So they got tired of hearing it.
They came up with this campaign. I was introduced to it last year at Gay Pride New York. I marched. We started on, I think it was, 49th or 39th, and Fifth Avenue. We started out there with 30 of us; by the time we got to Washington Square Park, there were over 200 people that fell in behind us. Because it's fighting this stigma.
Everybody talks about the stigma associated with HIV, and it's still very real. So by me being out about my status, that's what I do to fight the stigma. I'm not some kind of freak, some antique. I'm a live, viable guy that still has those desires that everybody else has. I just have a virus.
A lot of what you have been talking about, and just did talk about, was kind of your foray into activism. When would you say you started claiming that label as an activist?
When I saw United in Anger.
That's right. I'm sorry. You did say that -- when you saw United in Anger.
I had gone to a workshop by a group called The Body Electric in Philadelphia, and it was a rebirthing. For me, it was taking a look at all the baggage: the fact that I have cancer; that I have hepatitis C; that I have AIDS; that I have herpes; that I was abused as a child -- all this crap that I lugged around on my shoulder, feeling sorry for myself. I realized that all those things that I'm looking at in a negative light, I could turn around into a positive light. And they've made me the strong guy that I am that can fight HIV for 28 years. I've had the virus half of my life. I don't remember life before HIV. What I do remember is mixed with a lot of joy, and a lot of sadness, because that's when my relationships ended. Both of those gentlemen are dead from the virus.
And I watched the one guy. I went back to visit him and he was on a drip. His house reeked of feces. He was half the man that he was when we were partners. That is burned into my memory.
I did this Body Electric workshop. I go to Asbury Park and I meet these guys that don't care that I have to run off into the bathroom and change my diaper three or four times throughout the course of the night. They're embracing me. They're lifting me up.
Then I see United in Anger. And I go to the hospital. I'm in the hospital one last time. There's this gentleman, laying in the hospital bed. And the nurse, her name is Joy. I love telling this story. Her name is Joy, from French Guiana. "You've got to go talk to the guy in room 212."
"I don't want to talk to nobody. Just give me my meds. I want to go home."
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