By Joyce Chimbi
*Primrose Owino says the symptoms were at first gradual and easily dismissed but within two months, she could not walk, was losing her mind and her family was convinced that Owino was at deaths door.
“That was three years ago in mid-2019. I had been living with HIV for less than a year and on treatment. My skin started turning very dark. Then I lost a lot of weight and my hearing was not very good. On the phone, people told me I was shouting even though it seemed to me that I was speaking normally,” she recounts from her home in Mfangano Island, Homabay County.
“I would repeat the same sentence over and over. Then I started hallucinating. At the time, I used to go to a dispensary in Kasipul. They did not know why the drugs were not working and assumed I was in denial and not taking my ARVs.”
They were wrong. Owino had developed HIV drug resistance entering a cohort of at least 10 % of adults who develop drug resistance upon starting ART (antiretroviral therapy) as per the World Health Organization (WHO).
Worst still, there were concerns that her nursing baby may have been exposed to the drug resistance HIV strain. Drug resistance HIV strain is highly transmittable through sexual contact and from mother to child.
This heightened the risk for her baby as nearly half of infants newly diagnosed with HIV have HIV drug resistance before initiating treatment per WHO.
“My family was losing hope. My problem was not in the mind and counselling was not working. My ARVs were kept on a table next to the bed. I started eating the drugs like peanuts and vomiting at the same time,” Owino recounts.
One day, a Community Health Worker visited their home and upon assessing the situation, suggested that she visits a particular health facility in Kabondo Kasipul. The health worker had seen a similar case at the facility and the patient had fully recovered.
At the facility, she was treated with utmost urgency and eventually, a drug resistance test recommended and was put on an effective and superior ARV regimen, becoming a beneficiary of a HIV case management mentorship program in the Lake Victoria County of Homabay.
Justus Ochola, the County’s deputy Aids and STI Coordinator says that the mentorship program was inspired by the dire situation in Homabay County six years ago.
Homabay County was staring at a catastrophe with an uncontrollable HIV prevalence of 25.7 percent against a national average prevalence of 6.04 percent, as per the National AIDS and STI Control Programme (NASCOP) statistic.
Further, approximately 10,625 people tested positive for HIV per year and 3,307 people died of AIDs related deaths annually. Worse still, for every 100 children under the age of 18 months tested for HIV, four were positive.
Against this backdrop, Ochola says Homabay was in dire and urgent need of an intervention to address the pandemic, adding that HIV and TB were a most pressing issue due to their ever changing nature.
Per the Ministry of Health research, one of the most pressing challenges in Kenya’s efforts to combat HIV is HIV-1 drug resistance mutations, especially within the context of Kenya having the joint fourth largest HIV epidemic in the world with an estimated 1.5 million people living with HIV.
Experts such as Ochola say reducing the epidemic and ultimately eradicating HIV by 2030 in keeping with UNAIDS global goal requires a practical, cost effective and replicable solution to HIV drug resistance.
“In resource strapped public health setting, deductive learning to improve HIV case management where health workers sit in a classroom setting is too expensive and unsustainable,” he says.
In the last two decades, he adds, donor funding for health workers’ training has dwindled and the HIV burden has only gotten bigger.
“To have health care workers in a classroom setting learning about pediatrics ARVs, adults ARVs and classification of these ARVs is too expensive and therefore not feasible,” he says.
Health care workers such as nurses and clinicians with expertise in HIV case management have similarly gradually moved out of the workforce for various reasons including retirement creating a skills gap.
“Taking care of a cohort of 126,000 HIV patients in a small county like Homabay requires a high level of competence given the ever changing environment and mutations of HIV virus,” Ochola expounds.
This, he states, is how the mentorship program was born as an alternative to build capacities and enable HIV case managers, in this case nurses and clinical officers who are the primary health care providers, to improve treatment outcomes and quality of life for people living with HIV.
Daniel Mumelo, a Senior Technical Officer in HIV care and treatment within Homabay County says that at the top of the mentorship structure is the Nyanza/Western (NYAWEST) Technical Working Group.
NYAWEST, he says, is a regional committee of experts and medical consultants in HIV management that covers all 10 counties in Nyanza and Western regions.
In each of these 10 Counties, is a sub-county lead mentor who coordinates mentorship activities with other mentors attached to all health facilities at the sub-county level.
The lead mentor is also the link between all health facilities in that particular sub-county and the County technical working group.
“From the sub-county, we have the County mentorship program whose activities are coordinated by the County lead mentor and at this level, there is a County Technical Working Group (TWG) with linkages to the regional technical working group,” Mumelo explains.
Corneleous Edward Okal, Homabay County’s lead HIV mentor says mentors at the sub-county level build capacities of health care workers at all health facilities within that sub-county for better management of HIV cases.
“If a clinician at a dispensary has a difficult HIV case say of a patient who is failing on ART, the case is first handled at the sub-county level before it is escalated to the County technical working group and if need be to the regional technical working group where a team of expert provide guidance on a case by case basis,” Okal expounds.
Within this context, clinicians and nurses managing HIV patients work closely with their mentors to identify and manage ART failure including pediatrics ART failure and to make timely decisions on the way forward.
“Time is a most important factor when managing people living with HIV. We have acquired a lot of critical knowledge and continue to learn because learning is cumulative,” says Auma Oloo, a clinician and beneficiary of the program.
“There are three important areas of mentorship that I would like to pinpoint. Learning to detect a problem by just observing a patient and confirming your suspicions through relevant tests, keeping a solid patient’s record and summarizing a patient’s case to a level where a third party can use the information to make quick and critical decisions without reverting for clarification.”
She says this was the case for Owino and many other patients who have benefitted from timely expert recommendations after their cases were forwarded to NYAWEST for immediate action.
“Prior to mentorship, there was a lot of back and forth because case summaries were not properly done. HIV case management is about making life changing decisions and every minute counts,” she says.
“Decisions cannot be made until the committee of experts has all the relevant information pertaining to the patient who is failing on treatment. My mentor visited me often and together we would summarize cases. I have successfully summarized 10 cases.”
Gideon Mikoye Libulele, a Senior Technical Officer in HIV care and treatment based in Homabay County says early detection and response to poor treatment outcomes is critical.
“Approximately 30 to 40 percent of people on treatment are expected to be non-suppressed as per a study on advanced HIV disease conducted in three African countries, South Africa, Malawi and Kenya. In Homabay County referral for instance, 30 to 40 percent of the 7,000 people on ART are expected to have advanced HIV disease,” he says.
HIV experts such as Okal say non-suppression in HIV treatment means that the amount of HIV in the body is high and could mean that a person is failing on treatment because they have developed drug resistance.
“Nurses and clinicians are mentored to identify and solve problems in people who are virally unsuppressed. If for example the viral suppression rate at a particular facility is 80 percent, you put the spotlight on the 20 percent who are not virally suppressed to understand why they are not responding well to treatment,” Libulele says.
Of the 20 percent, in some cases, solutions are found at the facility level through consultations between mentors and HIV case managers.
He says to root out the problem, a patient is first put on a daily observed ingestion of ARVs for three months to ensure that drugs are being taken as recommended. A person may also be moved from the first line ART treatment to the second line ART treatment.
“If these measures are taken without expected results, the case manager will summarize the case by essentially providing a patient’s treatment history and interventions taken thus far and the issue is escalated to the regional technical working group,” Okal explains.
The committee of experts review the case and makes expert recommendations. These recommendations are e-mailed back to the case manager for clinical action.
These regional experts are critical in the management of drug resistance HIV as they are the only ones that can approve a HIV drug resistance test.
HIV drug resistance tests are only undertaken at the National HIV Reference Laboratory in Nairobi. One HIV drug resistance test costs Ksh40,000 and the cost is absorbed by the Laboratory through donor support.
HIV experts say life changing decisions are made based on the drug resistance test. Before patients are moved to certain treatment regimens, they must have undertaken the drug resistance test to ascertain that it is the only viable option because treatment options reduce as patients move from one treatment regimen to the next.
Keeping patients on an effective or working HIV regimen that produces desirable treatment outcomes over a long period of time is recommended.
WHO finds that among adults failing first line ART treatment, levels of drug resistance ranged from 50 to 97 %.
Experts say with such high projections, the cost of drug resistance tests to the economy is significant and reliance on donor support unsustainable, in addition to death and disability as a result of drug resistance.
More so, prolonged stay in the hospital over-stretches resources in cash-strapped public hospitals in developing countries such as Kenya and more so, in rural settings.
Against this backdrop, WHO raises concerns that despite success in ART across sub-Saharan Africa countries including Kenya, the emergence of drug resistance HIV has the potential to become a most pressing public health threat. And, could significantly limit treatment options for people living with HIV.
“Building capacities to identify causes to treatment failure before they escalate to drug resistance is critical. Some people develop drug resistance naturally others due to failure to take medication as recommended,” Ochola explains.
Okal says the mentorship program is so successful that in 2020, cases forwarded for review at the regional technical working group rose from 50 to 300.
“This means that 50 cases were forwarded the year before, despite many more cases being deserving of high level expert review due to ART treatment failure,” Mumelo explains.
“Nurses and clinicians at every dispensary in the county have access to at least one mentor and are able to escalate difficult cases for review and receive a solution on a weekly basis, sometimes even on the same day depending on the urgency.”
Across all 10 counties in Nyanza and Western regions, Homabay has emerged at the top in HIV case management, becoming a benchmarking site.
AIDs related mortality has reduced by more than half from 3,307 in 2015 to 1,458 in 2020. The annual new HIV cases in Homabay County have reduced from 10,625 in 2015 to 3,080 in 2020. ART coverage has risen from 63 percent in 2016 to 95 percent in 2021.
Eleven out of every 100 children under the age of 18 months will test positive for HIV at the national level compared to 1 in every 100 children in Homabay County.
Francis Omondi Onyango, a technical advisor at Homabay County Referral Hospital says accreditation of the hospital’s laboratory is another critical milestone in the appropriate management of people living with HIV as this significantly improves treatment outcomes.
Laboratory accreditation is the internationally accepted framework for increasing test quality and reducing the frequency of laboratory errors.
“Mentorship works across board in the management of HIV patients, from testing, treatment, record keeping, laboratory, laboratory networking and so it is a network of many factors. When this factors work together, we are able to address challenges such as drug resistance effectively,” says Mumelo.
It is this coordinated and structured capacity building and oversight that has enabled Homabay to avert a catastrophe.
Many of its beneficiaries such as Owino have gotten back on track, on their feet and their quality of life significantly improved.
Owino’s treatment outcomes are so positive that her most recent viral load test shows undetectable levels meaning that the virus cannot be detected using a standard blood test.
But the mentorship structure’s replicable and demonstrable high potential to produce desirable treatment outcomes, is not without challenges.
It is a structure that is largely reliant on donor funding for the infrastructure to keep it going. Technology required such as laptops for record keeping, internet connectivity, movement of mentors from one health facility to the next is donor funded.
Okal says there are eight sub-counties in Homabay County alone with terrain that calls for a high number of mentors to ensure that all health facilities are covered.
The County has the largest HIV treatment program in Kenya and the need for mentorship is high, which calls for more resources in technical support, personnel and systems such as laptops and telecommunication.
Nonetheless, he says a toll free telephone number that enables mentors to communicate is in place, also supported by a donor. Even as mentors and mentees shift to telemedicine as a precaution to limit face-to-face consultations, this is also supported by donor funding.
COVID-19 has further introduced challenges such as a longer turn around period in the processing of laboratory results. Prior to COVID-19, a drug resistance test took less than a month, today, the turnaround period is one to two months because laboratory infrastructure is overwhelmed by the pandemic. More so, a drug resistance test is very costly and the test is only processed at the National HIV Reference Laboratory in Nairobi.
This story was first published in https://bit.ly/3vCwFC5