Early Infant Diagnostics – Point of Care: ‘Open Letter’ to the Kenya First Lady, Margaret Kenyatta.
First Lady Margaret Kenyatta at a Maternity Clinic during her visit to Busia County.
We continue to raise awareness and look for support for Point of Care for Early Infant Diagnostics. For that reason, we share an open letter to the Kenya First Lady Margaret Kenyatta in this week’s issue of the Bulletin. As we explained in the previous issues of this Bulletin, we continue to be outraged that no funder in Kenya has stepped up to continue funding access to an innovation in peadiatric HIV technology --known as ‘Point of Care Early Infant Diagnosis (POC EID)’--not the Global Fund, not PEPFAR, not the government of Kenya. Our appeals to the Council of Governors and the USG – PEPFAR remain unanswered but we are still hopeful. Our appeal to the Kenya First Lady is in addition to the previous appeals. See: https://mailchi.mp/393ed43c3e74/edition-24-nephak-weekly-bulletin-16th-june-2394965 and; https://mailchi.mp/cb51be8649ef/edition-25-nephak-weekly-bulletin-23rd-june-2399353
We maintain that POC EID is a truly game-changing way to get families the HIV test results of an infant exposed to HIV without having to wait months and months. We at NEPHAK are also aware that survival of HIV-infected infants depends on early HIV testing, prompt return of test results and urgent initiation of ART. Until recently, lack of access to appropriate diagnostic technologies for HIV-exposed infants (HEI) has meant that only a few number of infants have received timely and accurate early infant diagnosis of HIV (EID) using the conventional EID testing, with others getting their results late.
Point of care EID (POC) is, therefore, an innovative intervention recently introduced to increase the number of HIV-positive infants whose HIV status is known in order to facilitate early ART initiation by providing HIV-exposed infants (HEI) with timely access to EID of HIV. It has shown promise in the ability to provide results much quicker in a variety of settings and in EID, it will reduce the turnaround time for receiving results and initiating ART treatment among HIV positive infants.
The experiences and lessons that arose from the NASCOP and NHPL when working in collaboration with EGPAF Kenya through funding from UNITAID to roll out the use of point of care(POC) in early infant diagnosis were too compelling to ignore! Under this partnership that also had NEPHAK perform the role of advocacy, communication and social mobilization, the POC TWG set a criterion which was used for sites identification in Homa Bay and Turkana counties for the roll out of this innovative technology on pilot basis with a view of obtaining lessons for scale up and to guide the country in roll out which is currently ongoing.. And when the pilot ended with the good results and good lessons, there was no investment to scale up the use of this innovative technology or to sustain the gains made in the pilot counties. Clearly, something is wrong.
Paediatric HIV is still a huge problem in Kenya. According to Kenya’s Spectrum 2019 estimates, there are approximately 10,047 new infections every year among children younger than 15 in Kenya. Out of a total of 122,446 children living with HIV, only 76,644 have access to treatment. Yet, without POC-EID, infant diagnosis of HIV in is only done by sending dried blood spot samples from remote clinics to central laboratories and other diagnostic centres. Logistical challenges including long turnaround time and equipment requirement of a minimum number of tests to run a batch lead to a 52.5-day median turnaround time from blood sample collection to result returned to caregiver.
POC EID access means more children living with HIV are being quickly identified and put on treatment in time to keep them healthy, unlike the old system, where significant funding over the past 10 years hasn’t delivered impact. It is for this reason that we share a direct appeal to the Kenya First Lady, who through her Beyond Zero Initiative has demonstrated commitment to the health, survival and well-being of infants and children. Through her leadership, we can at least secure support to ensure this technology that has proved useful in the lives of infants exposed to HIV are kept alive and healthy. Her Excellency First Lady Margaret Kenyatta, take up the POC – EID as part of the Beyond Zero Agenda so that infants and children exposed to HIV thrive under your leadership. In our opinion, Kenya has adequate resources to scale up the use of this technology.
While we are aware of the government’s commitment to ensure access to quality health care to Kenyans, we know this cannot happen if our voices are not heard. More importantly, government promises and commitments can be translated into actions and service delivery when good leaders like the Kenya First Lady adds her voice to ours. Since the First Lady has always stood with infants and children, we believe she can help ensure that children and infants exposed to HIV are not left behind in her agenda.
Surprise Lessons in Treatment Interruptions in Children: Never Try This at Home!
Through the online newsletter of the aidsmap, we have come across some surprise finding from a recent study which suggest that children who take a drug holiday during their treatment can in fact recover their full immunity if they resume treatment. See: https://www.aidsmap.com/page/3435326/. As interesting as this is, it is not something we can encourage NEPHAK members and the Kenya PLHIV community to consider. Never try this at home!
Some children and young people find ongoing adherence to HIV treatment difficult. Although taking a break from treatment is not generally recommended, some people may stop taking their medication for a few weeks or months – researchers in 17 countries found that 12% of children and young people had done so. This was usually the child’s own decision.
The researchers wanted to assess the impact of these treatment interruptions on the health of the children’s immune systems. Stopping treatment allows HIV to replicate and damage the immune system, but some previous studies suggested that after restarting HIV treatment, children’s immune systems recover quite well – better than adults’ do. To better understand the recovery of the immune system, researchers measured the percentage of white blood cells that are CD4 cells (known as the CD4 percentage). They found that two years after restarting treatment, the average CD4 percentage was at the same level as it was before stopping – in other words, there didn’t seem to be a long-term loss of immune function.
Of course this is an average, and some children did better than others. The younger the child was, the more likely it was they would have a good immune recovery. Also, children who previously had a strong immune system (their CD4 percentage had never fallen below 25%) were in a better position to bounce back. And the shorter a treatment interruption was, the better the recovery. It’s helpful for doctors to know which children and young people are less likely to have a good recovery. They may need to restart HIV treatment promptly if their CD4 percentage drops too far during a treatment interruption. For this reason, regular blood tests during a treatment break are important.
The reason this is not applicable in Kenya is because of the weak health systems and poor and/or sub-optimal nutrition available to many families living with HIV. Besides, infants and children and even adolescents infected with HIV in Kenya are also under the threat of other diseases and conditions. It is for this reason that we at NEPHAK must insist that the best ART is one that is initiated early and stayed on for life-long.
People living with HIV may have an increased risk of Arthritis
A small US study has reported an increased risk of cartilage damage in the knee associated with HIV infection and antiretroviral therapy. Cartilage is a tissue found throughout the body, covering the surface of joints and acting as a protective cushion. The study aimed to look at changes to the knee cartilage over eight years and was based on ten HIV-positive participants who had been on HIV treatment for at least 12 months with a comparison group of 20 people not living with HIV. The participants were matched for sex, race, age and body size. The baseline tests showed that the group of people living with HIV already had higher markers of damage, including fat pad abnormalities and more fluid around the knees.
Arthritis affects the joints, especially the knees, hips and the small joints in the hands, causing stiffness, pain and inflammation. Osteoarthritis is the most common form of arthritis, affecting approximately 250 million people globally and is related to ageing, with additional risk factors of high blood pressure, diabetes, and obesity.
Over the eight-year study, people living with HIV experienced greater deterioration to the knee cartilage and increased knee joint inflammation, but there were no significant changes to the structure of the knee. As this was a small study there is a need for further research in a larger group to confirm these findings.
This new study highlights the impact of long-term HIV treatment, inflammation and co-morbidities on people living with HIV as they age. It also shows the importance of following general health recommendations, such as losing weight, avoiding joint injuries and getting regular exercise. Our advice to NEPHAK members is that if you’re concerned about any symptoms from joint pain, please speak to a clinician.
NEPHAK Weekly Bulletin is published by the Advocacy and Communications Office at the NEPHAK National Secretariat. Articles can be reproduced freely as long as NEPHAK is acknowledged. Further details can be obtained from The Editor Tel: 0720209694, Email:info@nephak.or.ke, Website: www.nephak.or.ke, Tweet us: @NEPHAKKENYA
