Stigma can lead to foolish choices. I once made a choice that destroyed my immune system. Typing this article using my left hand is not an act of bravery but a constant reminder of the stigma that I entertained almost two decades ago. Every month, the shame I felt picking up my free essential drugs (cotrimoxazole) to manage my HIV.
Due to my father’s constant questions regarding what the drugs were for, I would stock them up for the garbage heap. Though I wanted to take the pills, I did not want my family to know about my HIV status. The privacy of our single-roomed slum house could not allow me to hide my drugs for long. Yes! I would throw my unused pills away every month to protect my secret. And yet, I would still go for my refills each month to maintain the façade of being a ‘good patient.’
But my secret shortly revealed itself because I contracted toxoplasmosis, an opportunistic infection of the brain—a condition which I could have prevented by taking my medication. Opportunistic infections take advantage of weakened immune systems and are common in persons living with HIV. This led me to lose the use of the limbs on my right side, a permanent disability. Try explaining to people why a 20-year-old would suffer a stroke, and they start piecing together the puzzle.
But this is not about my struggle with self-stigma. It is about the essential life-saving drugs that have been freely accessible for People Living with HIV (PLHIV) for years but are now stocking out of many clinics across Kenya. Cotrimoxazole DS tablets, or septrin, is one such drug that prevents over 40 opportunistic infections in people living with HIV, including pneumonia, meningitis, and herpes zoster.
One of the challenges since the onset of the COVID-19 pandemic a year ago has been the availability of drugs to treat HIV. There has been a shortage of Septrin tablets for adults, septrin syrup and nevirapine for babies born to HIV positive mothers. During my quarterly visit last year, I confirmed this with the KEMRI FACES clinic, the Comprehensive Care Clinic I attend.
Kenya’s stock outs can be attributed to two reasons. First are the supply chain disruptions caused by COVID-19; resources are being directed to fighting COVID-19 while sidelining other diseases. Second is corruption in the health sector, causing foreign donors to mistrust the accountability of Kenya’s government.
Since mid-January, HIV drug donations from the US Agency for International Development (USAID) have been sitting at the port of Mombasa. The crisis escalated this year because the Kenya Revenue Authority imposed 90 million Kenya shillings in taxes to clear the Sh1.1 billion consignment. USAID did not follow HIV and tuberculosis drug donations protocols by using the American firm Chemonics as a consignee instead of KEMSA. Usually, for drug donations to qualify for an exemption, they have to be passed through KEMSA, the protocol for HIV supplies.
In March, I went for yet another drug refill. My heart sank when the pharmacist at KEMRI mentioned that there was a stockout of ARVs. I had to take just one bottle that lasted a month instead of the usual six months. It means having to go back to the clinic several times for refills, uncertainty caused by rationing of drugs – not sure whether I will get the medicine the next time I go to my clinic, and the fear of COVID exposure every visit.
I have been taking cotrimoxazole alongside my anti-retroviral drugs (ARVs) since January 2005 and getting it for free. Strict adherence has brought me to the stage where my viral load is undetectable. I still take my ARVs daily for the virus to remain undetectable, but I do not need to take cotrimoxazole. Now the drugs I used to throw away are difficult to find, even for people who can buy them. I sympathize with many others with low immunity and cannot afford to purchase cotrimoxazole.
HIV activists lobbied online to push the Ministry of Health to intervene with a tax waiver. As a result, a press release on 6th April promised to restore the multi-month dispensation of ARVs in Kenya. The shortage persists in several clinics around Kenya because USAID wants to control the distribution of the drug. They are now considering shipping the donations at the port to another country.
The release also said that the Ministry is considering other options for funding HIV treatment. Alternatives for funding HIV treatment should consider this fact: Most people living with HIV whose lives depend on these drugs are either unemployed or under-employed and cannot afford healthcare on top of their daily sustenance. They, therefore, cannot afford to buy ARVs and other medications to treat or prevent opportunistic infections. All of this in-fighting amongst agencies impacts real lives, including mine.
I am worried about reversing the gains over the years in fighting HIV/AIDS. Until 2018, sub-Saharan Africa has seen declines in both mother-to-child transmission and new HIV infections. Unfortunately, the WHO projects 534,000 Aids-related deaths in the region due to COVID-19-related treatment disruption and warns that nearly 70 countries might suffer shortages due to COVID-19 supply chain interruptions.
Eighteen years ago, my 5-month-old baby died of HIV-related complications, partly because of my not taking drugs properly. I am now HIV positive and pregnant. Life has granted me a second chance to ensure I have an HIV-free baby, and stigma no longer plays a part in my decisions. I appeal to the Kenyan Ministry of Health, Kenya Medical Supplies Agency (KEMSA) and all donor agencies involved in purchasing and distributing HIV treatment supplies. Consider the gains you have made so far, reconcile your differences, release our ARVs, and restore their distribution countrywide.
Juliet Awuor Otieno is the founder of Mwanadada CBO, a social enterprise that provides teenagers in Kenya with age-appropriate, comprehensive sex, reproductive and mental health education. She is a 2021 Aspen New Voices Fellow.