Minister Beth Mugo
Ministry of Public Health and Sanitation
Following the Joint HIV and AIDS Programme Review (JAPR) on December 4, 2009, we are writing to provide input into the government's strategy on home-based testing and counselling. We understand that scaling up HIV testing and counselling is a priority for the Kenyan government, and that home-based testing and counselling is one of the central elements in the new strategy. We also recognize that the goal of testing 4.13 million Kenyans-adults and children-for HIV during the next year is likely to pose significant challenges.
Scaling up and ensuring universal access to HIV counselling and testing services is a critically important part of broader goals for universal access to prevention, treatment and care. Home-based testing and counselling programs, when combined with broader prevention and treatment scale-up, can help ensure that knowledge of HIV sero-status is translated into effective action. At the clinical and health-systems level, people who test positive for HIV too often are denied timely initiation of treatment that would help them manage their illness and protect others from infection; those testing negative do not always gain the information and understanding necessary to remain negative.
We are writing to you to urge the inclusion of a strong human rights component into this ambitious testing program. In particular, we are calling for clear attention to principles of counselling, consent and confidentiality, ensuring that monitoring and evaluation systems are in place to ensure the quality of services provided and quick redress for breaches in consent and confidentiality. We urge you to pay close attention to the scale-up of testing for children, to ensure access as well as protections, as children often face specific barriers to accessing testing and testing programs pose particular challenges affecting children's rights.
Our research on access to testing and treatment in Kenya has shown that HIV-positive mothers and HIV-positive children frequently suffer stigma and abuse when their status becomes known. HIV-positive mothers-among them girls under the age of 18-sometimes suffer violence, mistreatment, disinheritance, and discrimination from their husbands, families-in-law, or their own families. Some also get kicked out of their homes along with their children, and end up living in precarious conditions that make them vulnerable to further abuse. HIV-positive children sometimes experience violence and abuse from relatives with whom they live. We have also found cases where caregivers denied children medical care when they clearly needed it, and even stopped them from taking anti-retroviral treatment (ART) when the drugs were available in the home. In the community, many children also face discrimination and shunning because of their status. Others are only allowed to stay with their relatives so they can be exploited for their labor. Orphans are particularly vulnerable to these abuses. We have documented findings of our research in our report "A Question of Life or Death: Treatment Access for Children Living with HIV in Kenya," published in December 2008.
The government's new testing drive focuses on home-based testing and therefore reaches right into the family, where these abuses occur. Large-scale home-based testing may result in better access to testing and treatment, and we welcome this initiative as a chance to help those who cannot afford the transport costs to health facilities or lack information or willingness to seek a test. But this approach also poses challenges for the adherence to testing guidelines and human rights protection. Testing results will need to be kept confidential from other family members; for children they need to be communicated to a parent or caregiver, but this can also reveal the mother's positive HIV status. Consent for testing will need to be obtained from each adult individually, irrespective of other family members' views on testing. Children who are symptomatic, pregnant, married, a parent, or engaged in behavior that puts them at risk of contracting HIV also have a right to consent to their test themselves and to refuse interference from parents or relatives. Furthermore, potential conflict within the family resulting from disagreements over testing or from the test results will need to be managed it if leads to violence, abuse, discrimination, or exploitation.
We therefore appeal to you to include a human rights component in the large-scale home-based testing program. In particular, we are urging the government to:
- Ensure the participation of social workers in community mobilization and in the actual testing.
- Fully train lay counselors carrying out home-based testing and counseling on current testing guidelines and on key human rights issues affecting people living with HIV.
- Institute a clear referral system for any victims of rights violations to suitable, free government and nongovernmental organization services dealing with child protection and protection from gender-based violence.
- Institute a clear referral system to health services for all persons in need of anti-retroviral treatment (ART). This is of particular importance for children who need adult support to access and adhere to treatment. It is also vital that pregnant women who test positive are started on ART for their own health and for the prevention of mother-to-child transmission.
- Ensure that ART for children be available at the local level, for example, at health centers.
- Put in place workable supervision and quality control mechanisms that are capable of identifying problems with the home-based testing program in a timely fashion and allow for redress for individuals who feel that their rights have been violated. The 2007 UNAIDS/WHO provider initiated testing and counseling guidelines specifically call for "codes of conduct for health care providers and methods of redress for patients whose rights are infringed."
- Put in place independent oversight mechanisms to actively pursue and collect complaints about problems with confidentiality, consent, linkages to other health services, and abuse based on HIV status. Empower an ombudsman to act as a liaison between civil society and government health ministries to address complaints as they arise.
- Ensure that individuals testing positive are referred to social support groups including civil society groups and networks of people living with HIV, which can play a key role in ensuring linkage to treatment and monitoring of quality and rights protections.
- Work closely with the Ministry of Medical Services and the Ministry of Gender and Children Affairs to ensure full protection of human rights in testing.
- Ensure that human rights protections are measured as a part of formal monitoring and evaluation systems as well as periodic community-based surveys. Specific measures can include: satisfaction with HIV testing and counselling services; experiences of breaches in consent and confidentiality; negative consequences as a result of testing and specific discrimination due to HIV status.
As noted in the 2007 UNAIDS/WHO provider initiated testing and counseling guidelines, "positive outcomes are most likely when HIV testing ... is confidential and is accompanied by counseling and informed consent, staff are adequately trained, the person undergoing the test is ... referred to appropriate follow-up services, and an adequate social, policy and legal framework is in place to prevent discrimination." As you scale-up HIV testing and counseling services in Kenya, we urge you to develop programs to ensure that these guidelines are realized.
We consider these issues of great importance for the successful implementation of your home-based testing program, and we hope these suggestions are useful to you. We would welcome discussing these matters with you or your ministry staff further on the phone or in person.
Senior Researcher, Children's Rights Division
Human Rights Watch
Minister Peter Anyang Nyong'o
Minister Esther Murugi Mathenge
Prof. Olago, National Aids Control Council
Dr. Muraguri, NASCOP