In an old tattered notebook hidden under his pillow Shaban Juma continues to document his journey as he recovers from Tuberculosis (TB). He says the notebook has been his companion during his ailing days.

The 35-year-old, who has been living with HIV for the last six years, says he had started documenting his recovery journey after he was put on antiretroviral (ARV) drugs.

On November 3 last year when he visited his local clinic at Kongowea dispensary for his three months ARVs, he was informed by the nurse in charge that the hospital had run out of the essential drugs and was referred to Coast General Hospital, from where he walked home empty handed after waiting for over two hours.

Holding unto his faith that the virus had been suppressed, due to prolonged use of ARVS for over four years, he went on with his normal life until he began coughing.

At first he assumed it was a normal cough that would go away after using over the counter medicine.

“The cough did not go away; it lasted for close to three weeks. I decided to visit the hospital for further check-up and a series of tests were carried on me and I was diagnosed with TB,” he said.

Shabaan adds that he began taking the medication, but in the absence of ARVS, his health continued to deteriorate and he was hospitalised, three times at the Coast General Hospital.

“I have been taking the medication religiously for the last six months and three weeks ago I was reintroduced to my ARVS.

I have to endure side effects such as nausea and hallucinations. It feels just like the first time I began using this medication.

I have to endure the side effects before my body gets used to the medication again,” he said.

A similar fate befell 30-year-old Sarah Otieno.

Sarah was diagnosed with HIV in 2016 and put on ARVS in 2017. She, however, says she stopped using her medication in December last year after public hospitals ran out of ARV.

“I was first informed that septrin had ran out of stock and within three weeks two other types of ARVS, Lamivudine, Zidovudine, that we have been using were also out of stock.

Within a period of one month I had developed, pneumonia meningitis and TB,” she says.

Her situation was worse since she lost a lot of weight.

“I knew I would not survive yet another day to see my children into adulthood.

My weight dropped from 58kg to 42kg and doctors could not put me on TB medicine as I was not within the required weight.

They put me on a nutrition regimen that would enable me add weight for two months. I began using TB medicine in March this year,” she adds.   

Two weeks ago, Sarah was put back on ARVs, after defaulting for close to four months.

“I received my dose for one-month last week. I was excited. However, unlike in the past where I used to receive for six months.

My worry is where I will get more to sustain me after I finish my one-month dose,” she says.

On her part Susan Wala, 34, says she developed skin rashes that lowered her self-esteem and led to stigma, after she stopped using her ARVs for one month.

“I was lucky since apart from the  skin rashes that left my skin with so many dark patches I was lucky I did not develop  life-threatening infections,” she says.

On several occasions she was forced to borrow septrin from friends since pharmacies had run out of stock, due to the high demand.

ARVs were first introduced in the country in 2003, and over the years, the number of users has increased steadily.

According to data from the Ministry of Health, 80 out of 100 adults and 70 out of 100 children with HIV have been able to access the life-saving drugs.

This has seen the reduction of Aids-related deaths and improvement of quality of life among people living with HIV/Aids.

However, in June last year, public hospitals ran out of Septrin and HIV patients were forced to buy it at Sh20 due to Covid-19. 

The World Health Organisation had in July last year warned of such a shortage as a result of disruption of essential health service by the pandemic.

Shortage of ARVs was reported across public hospitals in Mombasa due to a standoff between Kenyan government and US Development Agency USAid over a tax dispute that resulted in stranding of essential drugs at the Mombasa Port.

Although Kenya Medical Supplies Authority distributed ARVs to counties last month, the impact of the shortage has already been felt. 

Poor drug adherence

Roseline Kerubo a clinical officer specialising in HIV/Aids attached at the Portregruiz Comprehensive HIV care Clinic says that Antiretroviral treatment reduces the level of HIV in patients’ blood to avoid damaging their immune system. 

She adds that non adherence to treatment leads to increased viral load.

“This means HIV can damage the immune system, and there is a risk that HIV will become resistant to medication and the drugs will no longer work even when you take them.

In most cases, the failure will be the result of poor drug adherence, wherein medication doses were frequently missed or treatment was interrupted,” she says.

With non-adherence to ARVs, it becomes more expensive to restart treatment for HIV patients.

“With cases of non-adherence to treatment, we have to monitor the viral load, through re-testing and trying to establish if drugs can still work to suppress the virus.

Someone who had defaulted has to undergo the second line regimen or third line regimen to establish if the medicine can still suppress the virus again,” explains Kerubo.

Executive director Marilyne Laini of Nkoko Iju Africa, a community based organisation that champions for rights of people living with HIV/Aids, says the situation remains dire after public hospitals were unable to provide ARVS. The organisation has recorded five deaths.

“It’s the high time the government, began documenting deaths related to HIV and Aids due to lack of ARVS.

People are dying due to lack of this life prolonging drugs. The government will not tell you a HIV patient has died of opportunistic infections as a result of lack of Septrin; you will be told your kin died of malaria or Pneumonia, an opportunistic disease a result of lack of ARV,” she says.

National Aids Control Council, Coast Coordinator Omari Mwanjama said that lack of Septrin had been witnessed in public hospitals across Mombasa since last year.

“When there was shortage of ARVS, especially Septrin, which prevents them from being exposed to opportunistic infections, we informed our patients to buy it from chemists or source for it from private hospitals,” he said.

He added that the council is keen on following up on non-adherence to ARVS among HIV patients, saying there has to be re-assessment before they are put back on medication.

At the same time, Mwanjama denied claims that HIV patients have died as a result of lack of ARVS.

“The council is not aware of any deaths reported as a result of lack of ARVs, however we shall dig into the matter to establish the truth,” he said.