A reporter's journey:
Living with HIV
by Ed Walsh
As a nurse drew my blood last Friday, the significance of what was happening and the date was lost on me. My biggest concern was trying to remember the words in Spanish to explain the procedure. As the blood was being taken from my left arm, I held my camera up with my right hand to explain to my Facebook friends in Guadalajara, Mexico, what was happening. I hate needles, so making the video was a good distraction.
(Photo: Courtesy Ed Walsh)
The blood test was the second-to-last hurdle before the main event one day next month when I will undergo light chemotherapy. Then, three days later, I will get an infusion of genetically altered T-cells that were manufactured in a laboratory to be resistant to HIV. The cells were taken from me in October and treated with something called zinc finger nucleases, which severs the CCR-5 receptor, a door that HIV uses to enter the cells. The procedure effectively makes those cells impermeable to HIV. It is part of a study aimed at curing HIV, a concept that seemed out of reach just a few years ago.
That Friday date was significant because exactly two years earlier, on April 12, 2011, while I was living in Guadalajara and attending a Spanish immersion school, a doctor from Kaiser called to tell me that my blood test showed that I was HIV-negative but that I had been "exposed to HIV." He added that I should be careful because I could infect someone else. At the time, I didn't know what that meant. I didn't know there was a test to show the presence of HIV before the antibodies had time to show up.
The conversation over my cellphone in the bustling lobby of my school in downtown Guadalajara lasted less than two minutes. There were no words of reassurance. I am 53 and have known many people who died of AIDS. Intellectually, I knew HIV is a manageable disease now but emotionally it is hard to separate HIV from death and dying. Another Kaiser doctor had ordered a blood test a month-and-a-half earlier after I got what I thought was the flu. I figured I should have it checked out before I left for a two-month trip to another country.
I assumed test results were a mistake. My only risk factor was oral sex and well before the point of ejaculation. I didn't think it was possible that I had HIV. Based on everything I heard and read, I thought the risk was insignificant. While it may be extremely rare to get the virus that way, according to most experts, it is possible with a partner with a high viral load, likely someone who is unaware of their status and consequently not getting treatment.
I slept a grand total of six hours over the next three days after getting that call two years ago. I asked my doctor by email for more information about the other tests that were done on me and asked if I could speak to a counselor about his diagnosis. He said he would see what he could do, but he never got back to me. I tried calling the San Francisco AIDS Foundation a few times over Skype but couldn't break through its voicemail system. I called someone on the Centers for Disease Control and Prevention HIV Hotline. The man who answered knew less about HIV than I did. I talked to a friend over Skype but couldn't bring myself to tell him what was going on.
It was 6 p.m. on April 15, the eve of the Palm Sunday weekend just before the start of Holy Week, the most important holiday week in Mexico. I knew I had to have an HIV test to prove to myself what I knew to be true, that I was HIV-negative. I knew it was all a mistake. The flu must have caused a false positive. After the HIV-negative test, I told myself, I could finally stop worrying and get some sleep. I searched on the Internet for the Spanish words for HIV test and found a listing for Colega, Guadalajara's LGBT center. To my surprise, a real person answered the phone told me to hold on. I heard him say "gringo" in the background. Then someone came to the phone who spoke perfect English and told me that I could get a test anytime before 7 p.m. I got lost on my way to the center and was late but they gave me the test anyway. When they gave me the results, I only remember the first syllable, the same in English as Spanish, "pos."
The people at the center couldn't have been nicer. The man who gave me the test asked what I wanted to do after hearing the diagnosis. I said I haven't been able to sleep much over the past few days and that I would probably go home to sleep. He said that is something that depressed people do and that I should be with other people. He found that a group of HIV-positive people, Checcos, was meeting at a hospital across town and that the meeting was starting in about 15 minutes.
A volunteer at the center, Cesar Uribe Diaz, escorted me on the bus to the meeting. Less than an hour after being told I was HIV-positive, I sat in front of a group of about 35 people and said in broken Spanish that I was HIV-positive like they were. I said the words but still held out hope that it wasn't true. After I got the test results, the people at the center explained that it could be a false positive and that I would need a couple of confirmatory tests. They said that HIV treatment is free in Mexico, but later added that it was not free for foreigners. It wasn't until about a month later, after I returned to the U.S., and got the results from the confirmatory tests that I finally believed and accepted the truth.
What I remember most from that time in Guadalajara is the kindness of strangers. I still get a little choked up when I think about how nice the people were. I met for coffee and drinks a few times with Diaz, his boyfriend, his friends, and his mother. I asked his mother in passing if she liked cooking, she said she did and asked if I would come over for lunch. A couple of days later, she had a friend who owned a car drive over and pick me up and take me to her house. She made lunch for me and her friend and we took a ride out to Chapala, Mexico's largest lake, about an hour outside of Guadalajara, where we spent the rest of the day.
I remember craving to be around other people. I accidentally left my backpack at Checcos after joining with the HIV-positive group on the night of my diagnosis. When I went back the next day to retrieve it, I sat around and talked with people there for a couple of hours. I met with the facilitator of the group, Raul Macias, a couple of times later to talk.
A few days after getting the test, I visited a friend who lives in a small town a two- or three-hour bus ride outside Guadalajara. The friend is HIV-positive but I remember that every time I started to tell him, I felt so physically sick, that I couldn't say the words. I wished that I had.
The first year after the diagnosis was extremely difficult but it was a great help being part of the UCSF Alliance Health Project's newly diagnosed group and with the support of Shanti and the Stop AIDS Project. My negative first experience with Kaiser quickly turned around. Kaiser nurse Ed Chitty was one most compassionate medical professionals I had ever met. The other Kaiser doctors with whom I worked were excellent.
I remember my hair falling out and I almost became bald from the stress after the diagnosis. I remember getting butterflies in my stomach every time I got another email from my doctor about more tests or procedures I had to undergo. I went to bed feeling scared and woke up feeling scared. When I didn't think of it for a few seconds at a time, then thought about it again, it was like the sensation of waking up from a bad dream. But instead of being able to reassure myself that it was just a bad dream, I had to accept all over again that it was real. A few times I remember thinking that I wished it was the bad old days and that I would just quickly get sick and die. I remember thinking that if I could adequately explain to people how bad I felt, they would not only practice 100 percent safe sex all the time but that most would be scared into celibacy.
I remember my hand shaking as I took HIV drugs for the first time in July 2011. I was terrified that I would have horrible side effects and worried that I had selected the wrong medication for me. I picked the Isentress and Truvada combination. It meant two pills in the morning and one at night. I felt awful for about 10 days and then had off and on headaches for about two months but now I feel fine and have no side effects.
Guilt, anger, disclosure
It is extremely difficult for me to write this, but I am doing it for three reasons: to help fight stigma, to encourage people to be tested and treated, and to support and encourage cure research.
By far the most difficult emotions were the feelings of guilt, embarrassment, and being angry at myself for getting HIV. I remember questioning whether I was an incompetent person who was unable to make reasonable judgments about anything. I went to work, paid my bills, did everything I am supposed to do but my self-confidence was gone. I was lost.
Just after being diagnosed I remember being envious of people begging for money on the streets of Guadalajara because I thought to myself that they have nothing but at least they didn't have HIV. The school where I studied in Guadalajara was made up of mostly Mexican students who were there to learn English. I usually stayed after school to help the Mexican students learn English and they would help me with my Spanish. I remember working with this young woman who told me that she used to work at Burger King for about $8 a day and how difficult a job it was. Others would tell me similar stories. Before the diagnosis, I felt so lucky that I was born in the U.S. But after, I felt just the opposite. I remember walking through the gay neighborhood in Guadalajara close to my school. A man smiled at me. But I remember thinking of myself as a walking toxic dump and that I had to get away from him because I could kill him. I never thought of HIV-positive people that way, but now I thought of myself that way.
(Photo: Courtesy ABC7 News)
I didn't feel like myself again until June of last year. I was working on the case of Edwin Ramos, the 26-year-old man who was convicted of shooting and killing a man and his two sons. I interviewed Ramos several times in jail for a story I was writing for Examiner.com. I remember talking with Danielle Bologna, the woman whose two children and husband were shot to death. I remember shaking Mrs. Bologna's hand in the district attorney's office and telling her that I wished I had her strength. She took both my hands and smiled and said that maybe some of it would rub off on me. Working on that story was a turning point. My problems didn't seem very big next to a woman whose family was wiped out in seconds. I found that I regained some of the confidence that I lost with the diagnosis and realized I could still report on criminal cases as well as any reporter.
Disclosure was a big issue for me. A few weeks after being diagnosed, I had lunch with a former colleague, Hank Plante, who pioneered HIV/AIDS reporting for KPIX-TV. I couldn't bring myself to tell him, but I did six months later and he was very supportive. Last fall, I disclosed to my colleague at KGO-TV, Cheryl Jennings, who like Plante, hugged AIDS patients when other reporters were afraid to be in the same room with them. I held it together but I started to cry when I thanked her for her reporting on HIV. Then we both started to cry. She encouraged me to disclose to my mother, which I did in January. Fortunately, I had disclosed to one of my sisters and three close friends earlier. That was very difficult. I told none of my friends and colleagues at the Bay Area Reporter, where I am a contributing writer, until last week when I proposed this story.
A game changer
A game changer in HIV prevention came two years ago when results of a study with heterosexual couples in Africa revealed that there was a 96 percent reduction in HIV transmission among people who are on HIV medication. The HIV drugs reduce the viral load of someone who is HIV-positive to undetectable. In other words, almost everyone who is getting HIV now is getting it from someone with a high viral load, probably because they don't know that they are HIV-positive.
If you are afraid to be tested because you are afraid of being HIV-positive, I understand completely. I still remember that hot night in Guadalajara two years ago. It took everything I could to put one foot in front of the other to go get tested. I remember getting lost and walking through a scary part of the city. But I remember not being the slightest bit afraid of my surroundings. The fear of why I was there overwhelmed any other feeling.
If you don't know your HIV status, you have more power than anyone in helping stop its spread by getting tested and into treatment. Of course, everyone needs to practice safe sex. But humans are human and make mistakes. Many of us wouldn't be here if it weren't for a mistake. Condoms sometimes break and more often are not put on correctly.
I know a lot of people don't want to get tested because of stigma. For some, it is better not to know their status than to have to say that they are HIV-positive. I think some people may have in mind the disfiguring and debilitating side effects of some of the older medication. I have met a lot of newly infected HIV-positive people. The few I know who had side effects with one drug were able to easily switch to a tolerable one with no side effects. I have been in excellent health since my diagnosis. I worked more last year than any other year of my life. I have been healthier, have as much stamina and energy as any of my HIV-negative colleagues.
Finally, there is a lot of hope for a cure out there. I was privileged to interview and write about Timothy Brown, the so-called Berlin Patient, who has been functionally cured of HIV. The method that they will use with me next month works under the same theory that cured him. I will get reinfused with my own blood but it will be minus the receptors that allow the HIV to infect my cells. The researchers hope those cells will make other cells that will also be resistant to HIV. The chemo that I will get a few days earlier will help make room for the new HIV resistant cells get a foothold on my body. The doctors say that there is little chance that this procedure will cure me but it will help them prove that the method is tolerable and will bring them closer to a cure.
There already have been some promising results from this procedure. One woman with HIV has been able to maintain a relatively low viral load level without HIV drugs and one man became undetectable after the procedure. But in both of those cases, the individuals were "heterozygous," which means that they are among a small minority of people who naturally have far fewer CCR-5 receptors. There are many long term HIV survivors whose HIV has found a second pathway to the cells via the CXCR4 receptor. This procedure alone would probably not help those people but it is a small step toward a cure for all.
The scientists also say the procedure stands a better chance of working in people like me who were diagnosed and put on medication early before the virus had a chance to wear down the immune system. There is mounting evidence that people who receive early treatment for HIV are much healthier.
This HIV study is the fourth for which I have volunteered. I am happy to make something positive over an experience that was very negative. I am currently also participating in UCSF's Options study on the effects of stress and HIV and the great people at that program have provided me with invaluable advice for dealing with HIV. I have donated money to HIV charities in Mexico and here at home but nothing would match the contribution I and others can make by volunteering for studies, particularly studies aimed at a cure.
I remember two years ago when my doctor did not respond to my request for more information on the other blood tests that had been run on me. I thought he didn't respond because maybe I had other serious medical issues that he felt that had to tell me only in person. I thought a lot about my life, what I've done with my life and the things that I wish I hadn't done. I remember that series of stories of which I was most proud were the ones I wrote on nonoxynol-9, a substance that was added to lubricates despite studies proving it dramatically increases a user's susceptibility to contracting HIV. The Food and Drug Administration had dragged its feet on the issue for years, but the B.A.R. stories shamed the manufacturers into stopping production of the lubricants. I believe those stories prevented at least someone from getting HIV back in 2002 when medications were not as good as they are now. I felt good about that.
As difficult as it is to tell my story publicly, if it prevents even a single person from becoming HIV-positive or helps someone cope with a diagnosis, for me, it would be a fair trade off.
If you are afraid, I couldn't empathize more. It is hard for me to believe that anyone would be more afraid than I was that night. If you need support to get tested, please email me at firstname.lastname@example.org. We can chat online or on the phone. I would be happy to personally take you to get tested. We are lucky here in the Bay Area to have so many people who can help and who are quite frankly better qualified to help than me. But I am here if anyone wants to talk. You can also reach me directly by cell at (415) 272-1419.