I resisted ARVs for 27 years: Meet the first Kenyan to go public about his HIV status

Joe Muriuki is a picture of perfect health, and as he saunters over with a smile on his ruddy face, It almost seems like there is a spring in his step. He recently ran unsuccessfully for a slot at the East African Legislative Assembly and he excitedly shares with me details of the campaign and insider politics before we can get to the main agenda of our meeting.

Joe has lived with HIV for 31 years and has only been on ARVS for four years.

“Eating a healthy diet, keeping active, a positive attitude, and being sexually responsible, has helped maintain a stable CD4 count of over 400 throughout the 31 years. My viral load has never been detectable,” he explains, seemingly proud of his feat.

Having an undetectable viral load means that he is not infectious. A CD4 count of over 400 means that his body’s immune system is strong enough to fight opportunistic infections.

 The ARV drug that did nothing for him

He is currently on ARVs, to which he also credits his good health. He only started taking ARV medication four years ago when his CD4 count dropped to 470 from 500.

“Thanks to having access to information, I was careful not to start taking ARVs when they were in the experimental stages and had plenty of side effects. I always strived to maintain my CD4 level at above 500. When it dropped to 470 and I started experiencing symptoms of illness, I decided it was time to go for ARVs.”

His wariness about taking any medication is understandable, considering he was one of the first people to take Kemron- a drug invented by Kenyan researchers. Kemron was released in Kenya in 1991 and purported to be effective in treating AIDS but was later discovered to perform no better than a placebo.

“The researchers kept on assuring us that the drug would cure us. I took Kemron for about two years (1991-1992) before calling it quits. As far as I can tell, it didn’t help me. But who knows, Kemron was later found to act as an interferon so maybe it helped with management of the virus,” Muriuki says.

Interferons are drugs which boost immunity by inhibiting virus replication in the body.

After Kemron, Muriuki decided that he would only take medication after it was thoroughly researched and tested or he really needed it. He feels that ARV drugs are currently at advanced levels where most of the side effects have been eliminated.

“Right now, anyone who tests positive for HIV should start taking ARVs immediately. Besides helping one manage HIV virus, ARVs also help you fight other infections in your body. They lower your risk of cancer and other non-communicable diseases. They also boost the function of your organs. I noticed that ARVs have boosted my memory and I’m enjoying really good health.”

Adverse drug reaction

However, his personal experience with ARVs wasn’t so smooth at first. “The first combination I was given included a drug which reacted badly with me. The drug affected the production of red blood cells, which led to minimised oxygen circulation in the body. I was experiencing extreme fatigue. I was almost at the point of death and had to be admitted in hospital and get blood transfusions. But when the combination was changed, I got better.”

Coming out to the world

In 1987, Joe Muriuki announced to the world that he was HIV positive, becoming the first Kenyan to do so.

The doctor who had diagnosed him with the disease had informed Muriuki that he only had about three months to live. Subsequent doctors confirmed both the diagnosis and prognosis.

But the three months passed by, then six, a year...and now 31 years. In 1987 when he went to the doctor after a short illness, he never expected to be told he had what at the time was known as “the slim disease”.  The name came from how the disease was known to cause extreme and rapid weight loss. It was associated with gay men and the very sexually immoral. Muriuki was none of those.

“I was a normal young man with a normal lifestyle. I had a promising career as an accountant at Nairobi City Council.  I had been losing weight and having other standard symptoms associated with HIV but I assumed it was malaria. The doctor ran various tests including one for HIV. On getting the results, the doctor stood and started pacing to the window.”

Muriuki knew that something was deeply wrong. The doctor turned to him and dropped the bombshell that would define Muriuki’s life hence forth.

“Muriuki, the tests show that you might be HIV positive. You are the first patient I’ve come across with the disease,” the doctor pronounced.

 HIV negative wife

The weeks and months afterwards Muriuki and his wife were tested over and over. His wife’s tests were negative, while his were positive. He would have understood if she left him at that point, but Jane swore that she would stick him to the end.

His wife was three weeks pregnant with their third child at the time and the doctors advised the couple to terminate the pregnancy as soon as possible.

“There was little information about HIV/AIDS and the doctors assumed that the baby would be born with HIV and die immediately afterwards, or would be miscarried. They said my wife’s negative results were only temporary and she was going through a 3-month window period before she would test positive,”

But the couple decided to keep the pregnancy and assume a wait-and-see attitude. Nine months later, the baby, a healthy boy, was born right on schedule. Like his wife, the baby was HIV negative.

 Stigma of the 80s

Publicly announcing his status came at a price. He faced stigma at every turn. In the office, he was “demoted” from accounts to a small office affiliated to a clinic and generally made to feel unwelcome. He eventually quit the job and retired to Nyeri- his rural home- to await his imminent death.

His wife’s relatives questioned her decision to stay with him. He was shunned everywhere he went. “Even my chair at the office was thrown out. Everybody thought I could infect them by even touching them.”

He was also denied the right to pen a bank account. “I went to Nyeri to open a bank account but on learning that I had HIV, they said I couldn’t open the account as I was going to die.”

When death didn’t come for his as the doctors had prophesied, Muriuki decided to start a HIV/AIDS non-profit organisation, Know Aids Society.

“It turned out being “demoted” to that small office affiliated to the clinic and publicly announcing my status was a blessing in disguise. I made valuable connections with people and organisations dealing with HIV/AIDS and began my life’s work of representing and motivating others in the same situation. Unlike many who were HIV+ I was always exposed to the newest information on the disease, which has helped me maintain my health over the years,” he says.