NEPHAK members join a group photo during the 2019 AGM in Mombasa County
NEPHAK members last week voted for far-reaching reforms to expand the niche and focus of the network. The unanimous vote to change the NEPHAK constitution was made at the networks 2019 Annual General Meeting (AGM) held in Mombasa county. With the vote, the network has now embarked on a journey to re-organize its identity, membership, and governance. The reform also saw the number of board members being reduced from 11 to 7 members. The change is expected to expand the NEPHAK membership from that of people living with HIV to those at risk of and affected with HIV and related co-infections and comorbidities. According to the NEPHAK membership who attended the AGM, the reform is aimed at transforming the network into a movement to engage in and represent communities in the broader health agenda.
Registered in 2003 as an NGO under the NGOs Coordination Act of 1990, the network’s purpose is to enhance the knowledge and skills of affected communities in Kenya to engage meaningfully in health policy and programming initiatives. NEPHAK original mandate was based on the core competence and strength derived from the GIPA Principle. In emphasizing GIPA and the right to participation, NEPHAK recognized that the meaningful involvement of PLHIV and affected communities made a powerful contribution by enabling individuals and communities to draw on their lived experiences in responding to HIV and the related health conditions. In turn, this contributes to reducing stigma and discrimination and enhanced effectiveness and appropriateness of health interventions.
The significant changes shall be experienced in the management of the NEPHAK membership and affiliation. In the past, the membership has fluctuated as member organizations and associates often-always choose when to renew the annual membership. The membership is usually high during the board elections, held every three years. With the change, members indicated that those who fail to renew membership will automatically cease to be members and can only re-join if they re-apply and the application approved by the board. This means that before the board meets to review the re-application, members from the group that re-applies will not be able to engage in the network's activities, including participation at the AGM.
Meanwhile, the NEPHAK leadership also at the same AGM last week issued a call for the national and county governments and their partners to increase investments for HIV and health to enable the acceleration of the delivery of the 90.90.90 HIV targets and the achievement of universal health coverage goals in Kenya. The call was part of the report of the Chair of the board of the NEPHAK made at the AGM. In the report, Ms. Irine Murunga, the Chair of the NEPHAK board noted that the deadline to deliver of the 90.90.90 targets is just months away and there is every indication that the targets shall not be met if adequate funding is not availed. With regard to the UHC goals, the Chair of NEPHAK called for the meaningful community engagement in the planning and the roll-out of UHC interventions.
Higher mortality in elderly HIV-positive people with prostate, breast or colorectal cancer.
In the past issues of this Bulletin, we have always shared on the link between living with HIV and certain cancers. Now, recent research published in JAMA Oncology as reported that outcomes for some common cancers are significantly poorer among people with HIV over the age of 65 compared to HIV-negative people of the same age. The study is especially important because all the patients received appropriate therapy for their cancer soon after it was diagnosed. People with HIV had an increased risk of cancer relapse and death.
The investigators suggest that the higher mortality risk observed in people living with HIV is likely due to immune suppression, and believe their findings are especially significant given the aging of the HIV-positive population. “Elderly HIV-infected patients with cancer experience poorer cancer outcomes than HIV-uninfected patients receiving similar stage-appropriate treatment,” comment the researchers. “People living with HIV are expected to die at higher overall rates due to the contribution of AIDS-related comorbidities, but we report that HIV-infected patients with cancer who are 65 years and older are also at increased risk of cancer-specific death and relapse after initial therapy.”
Improvements in treatment and care mean that many people with HIV now have an excellent chance of surviving well into old age. The diseases of aging – including common cancers such as those of the breast and prostate – are an increasing cause of serious illness and death among people with HIV. Some research suggests that people with HIV have poorer survival after cancer diagnosis when compared to than HIV-negative individuals with same cancer.
The investigators to the study being referred to conclude: “Our observation of a persistent survival disparity after adjusting for available first-year cancer treatment data suggests that health care differences are not the sole driver of poor cancer outcomes in the HIV population”. They suggest that these differences are more likely to be a direct result of immune suppression. They emphasize that outcomes were poorer in HIV-positive patients for cancers with a range of causes, suggesting that HIV-related immune suppression has an important role in response to cancers. “HIV was associated with an elevated risk of overall and cancer-specific mortality. HIV patients with prostate and breast cancer appeared to be at particularly increased risk of worse outcomes, even after adjusting for available data on first-year cancer treatment”.
The investigators believe that: “As the HIV population continues to age, the association of HIV infection with poor breast and prostate cancer outcomes will become increasingly relevant, especially because prostate cancer is projected to become the most common malignant neoplasm in the HIV population by 2030. Research on clinical strategies to improve outcomes in HIV-infected patients with cancer is warranted.” It is therefore important for PLHIV to engage in cancer prevention strategies, including cancer screening.
Important Call: Your Opportunity to engage with NEPHAK
In order to fulfill its mandate and serve her membership, NEPHAK is calling for interested and suitable individuals and firms to engage in specific areas as outlines below. You may get the details of the calls: through this link: https://nephak.or.ke/updates/
A) PLHIV Stigma Index 2.0 Consultant In many countries and communities, the stigma associated with HIV and the resulting discrimination can be as devastating as the illness itself. Acts of discrimination commonly include abandonment by spouse and/or family, social ostracism, job and property loss, denial of education and medical services, and violence. Fear of these consequences means that people are less likely to voluntarily take HIV tests, disclose their HIV status to others, and adopt HIV preventive behavior, or access treatment, care, and support.
As efforts to address stigma and discrimination increase, so does the need for a standard set of tested and validated stigma and discrimination indicators. Ultimately, the main aim of this project is to broaden the understanding of stigma and discrimination faced by people living with HIV in different countries and to be able to find out if there have been changes over a period of time. NEPHAK is, therefore, looking for a suitable and qualified research partner to support the roll-out of the PLHIV Stigma Index 2.0 in Kenya. For details, see: https://nephak.or.ke/wp-content/uploads/2019/08/TOR-Kenya-Stigma-Index-Survey-2019-NJO.pdf
B) HIV Treatment Literacy Development Facilitator Treatment literacy aims to help individuals and communities understand why HIV treatment is needed, and what it can and cannot do. Effective treatment literacy, developed by or with people living with HIV and those taking antiretroviral therapy (ART), can lead to improved health outcomes, better adherence and retention of patients to drug regimens and higher uptake of voluntary counseling and testing.
NEPHAK is seeking the services of a facilitator to develop comprehensive and effective treatment literacy materials to be used in interpersonal communication with audiences and influence behavior change. The facilitator will develop well-designed materials with tailored messages that have the potential to impact social norms and behaviors that lead to adherence in order to achieve viral suppression and optimize outcomes in patients with HIV. For details on the assignment, see: https://nephak.or.ke/wp-content/uploads/2019/08/ToR-for-TL-Facilitator-NEPHAK.pdf
C) External Auditor NEPHAK is inviting reputable and suitable Auditor, Audit teams and/or audit firms to submit a proposal for conducting an independent external statutory audit of its financial statements for the financial year January 01, 2019 - December 31, 2019. This is a statutory requirement with the objective of Ascertaining the true and fair view of the organizations financial position; Ascertaining that NEPHAK’s internal controls, processes, guidelines, and policies are adequate, effective and in compliance with governmental requirements, industry standards, and organization policies and; generating information to enable the NEPHAK management and board improve on financial management, risk mitigation, accountability, and financial reporting. For details, see: https://nephak.or.ke/wp-content/uploads/2019/08/External-Audit-NEPHAK-Call-and-TOR.pdf
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
