|Advocacy for a Viral Load Machine for Kiambu Level 4 Hospital Case Finding|
|Situation on the Ground|
Abstract and Proposal Summary
On 27th November 2014, the Kenya Network of Religious Leaders Living With or Personally Affected by HIV (KENERELA+ Kenya) held a dialogue meeting which brought together PLHIV and religious leaders in Kiambu County with an objective to create dialogue between the stakeholders. The major goals of dialogue meeting were;
- Support and develop a sustainable network of PLHIV in the county
- Collect perspectives of PLHIVs within the county and support documentation of the challenges they face
Subsequent dialogue meetings were held over the course of 2015 where some gains were realized and several issues were raised which include;
- Faith based actors are opinion shapers in the fight against stigma and discrimination.
- HIV and Aids sensitization programs have been carried out in mainstream churches where information has been disseminated thus opening up the debate on issues of stigma and discrimination.
- Distribution of IEC materials has been done within the congregations.
- Some PLHIVs have been encouraged to share their status thus helping fight the war against discrimination. However, there have been some challenges which include;
- PLHIVs still continue to face stigma and discrimination in faith communities
- Limited resources to support the FBOs in stigma reduction activities
During the dialogue meetings, the PLHIVs pointed out the challenges they go through and noted that the need for a viral load machine was critical within the county. This necessitated the formation of a subcommittee which collected data within five sub counties to indicate the challenges and issues that the county government would address towards HIV.
The HIV prevalence rate in Kiambu County is 3.8%, which is lower than the national rate of 6%. Kabete sub-county has the highest prevalence rate of 9%, way above the national average. The prevalence rate for women stands at 5.6%, more than double that of men which stands at 2%.
There are 46,656 people in Kiambu living with HIV, out of which 4,256 are children. In the last one-year, 1,068 new cases of TB were reported in the county. The following table is a summary of the situational report from Kiambu.
|KIAMBU COUNTY SITUATIONAL ANALYSIS
|Total number of PLHIV||46,656|
|By Gender (Adults)||Women||5.6%|
|Per Sub County|
|Total no. of health facilities||356|
|Health facilities providing HIV testing||228|
|Health facilities providing PMTCT||190|
|Health Facilities providing ART||48|
|No. of TB/HIV Co-infections in the last One year||1068|
|*Data Source: Kenya County HIV Service delivery Profiles, NASCOP 2014, TB/HIV data from National TB program routine reports, Civil Registration and Vital Statistics, Kenya HIV County profiles, NACC 2014.|
Faced with the above situation, the Kenya Network of Religious Leaders Living with or Personally Affected by HIV and AIDS (KENERELA) has joined hands with other stakeholders at the national and county level to help create interventions that will see the county move towards zero new infections, zero deaths, and zero stigma. KENERELA does this through several interventions.
One of the key strategies is to promote dialogue between People Living with HIV (PLHIV) on one hand, and stakeholders and duty bearers on the other. To this end, KENERELA has facilitated several dialogue and capacity building sessions bringing together PLHIV, religious leaders, and government officers (including medical professionals). One of the key outcomes of those engagements is the realization that the partners need to have evidence-based interventions.
Consequently, the partners agreed to seek relevant data from the county or national government organs and also get the views of PLHIV. Five Focus Group Discussions (FGDs) were held throughout the county. Each FGD brought together two or three sub-counties as follows:
- Juja, Ruiru and Thika Town sub-counties
- Kiambu and Kiambaa sub-counties
- Kikuyu and Kabete sub-counties
- Limuru, Lari and Githunguri sub-counties
- Gatundu North and Gatundu South sub-counties
This report contains a brief summary of the findings of those initiatives. It is expected that this information will provide the stakeholders to develop advocacy and capacity building programs that will respond the findings contained in the report.
When asked to describe HIV and AIDS services at the government health facilities, only one of the FGDs described the services as being “good,” while one FGD gave a neutral answer by saying that services were “medium”. The other three FGDs described the services as being ineffective, bad, and outright negligent.
The reasons given for these services are varied. One of the most prominent reasons is the location of services. Participants from Juja, Ruiru and Githunguri indicated that in the course seeking treatment, they are mixed with other patients who are attending other clinics. The FGD in Kiambu and Kiambaa have had challenges because they are forced to collect drugs from the general pharmacy, thus posing a challenge with the disclosure. One group described that the language used to describe the location of the HIV clinic as being stigmatizing. They are instructed to “go to the back next to the people of HIV”.
Together with poorly located facilities, the participants reported that they deal with personnel who have a negative attitude, or exhibit a low level of skill in handling their issues. In Kiambu and Kiambaa sub-counties, a nurse in the triage is known to “insult” PLHIV. In Limuru, Lari and Githunguri, doctors seek information from packages that come with the drug. According to the participants, they seem not to have prior information on the medicine they prescribe to the PLHIV. In two of the FGDs, the lack of a gene expert was singled out as an issue.
There is also an issue of gender dynamics in this. Some participants indicated that they were more comfortable with people of the opposite gender. Sometimes they do not have a choice on who will attend to them.
Some services are difficult to get. CD4 Count, Sputum Test, and Viral Load Testing take long, and some cost a fortune. Most of the FGDs reported that the nearest viral load machine is in Nairobi. This observation conflicts with information from the National Aids Control Council, which indicate that there is a machine at Thika Level 5 Hospital in Kiambu County. It would appear that the PLHIV are not aware of the existence of this machine. For most of the participants, the nearest center where they can get sputum test is Mathari Hospital In Nyeri.
Consequently, the PLHIV have to wait for many months before they can get the viral load tests. Many of them reported that it takes a minimum of six months to get results of the same. For some, the samples get lost along the way. For the sputum test, the PLHIV have to travel all the way to Nairobi, costing them time and money. They inevitably disrupt their economic lives to seek treatment, thus compounding the problem.
The above is despite the fact that some of the PLHIV cannot get permission from their employers to go and seek treatment. Angels Limited was singled out as one such employer, who denies the workers time off to seek HIV services. Other companies still require the PLHIV to disclose their status. Still others have been fired from their jobs because they did not receive treatment quick enough to allow them to go back to work.
Another complaint from the participants is that the services rendered at the Comprehensive Care Centers are no longer “comprehensive”. Some of the costs of testing and treatment that was previously covered by the government have been transferred to the PLHIV. These include testing and treatment for opportunistic infections.
In almost all the FGDs, the participants reported that the support groups that existed to offer psychosocial support have all been disbanded. This means that the PLHIV do not have ongoing support outside the hospital setting, thus rendering the cycle of care incomplete.
As a result of the above, PLHIV cannot get timely services. The doctors do not know when to put the PLHIV on different protocols because the results from the various tests are not available.
Because of the poor conditions of services (location and attitude of personnel), many PLHIV delay or avoid seeking services. The ones with money transfer to other centers such as Machakos to keep their status confidential.
Because of the lack of psychosocial support, many PLHIV are failing to adhere to the treatment protocol. Part of the defaulting is due to lack of food, which is an essential part of ART. The health workers play a role in non-adherence. Some of them have been reported to threaten the PLHIV that they would reduce the medication as a way to punish the PLHIV for some mistake or another. In an interesting case in Kiambu and Kiambaa, the PLHIV are “punished” by being forced to take double doses (to cover for missed treatment) while others are given doses to cover for two days to force them to come back again to the hospital.
When asked to rate the health personnel on their knowledge on HIV issues, most of the FGDs returned a positive verdict. They said that health officers exhibit sound knowledge. There was an exception to this rule, with participants from Limuru, Lari, and Githinguri sub-counties reporting that the health workers do not seem to be well informed on issues of HIV treatment, thus resulting to always reading labels on drug packages.
On the assessment of the attitude of the health workers, three groups rated indicated that the workers in their respective sub-county hospitals do their best to help. However, the groups from Limuru/Lari/Githunguri and Kiambu/Kiambaa are unhappy with the attitude of some of their service providers.
In Kiambu/Kiambaa, the nurse at the triage “stigmatizes” people seeking service. In some instances, she use abusive language and is reported to have threatened to slap a girl who was entering into the treatment protocol. According to the participants, the girl defaulted on treatment. There was no particular incident given in Limuru/Lari/Githunguri, except for the general comment that the “nurses mix personal issues with work”.
In three of the five FGDs, the participants expressed satisfaction with the way confidentiality issues are handled. They reckoned that there are still opportunities for leakage of information, but that is largely outside the control of the health professionals. Such opportunities include long delays in accessing services. In Kiambu and Kiambaa, the same triage nurse exposes patients to stigma, by asking them questions so loudly that people outside the triage can hear the conversation at least from the nurse’s side). In Limuru/Lari/Githinguri, a case is reported of health workers who, while tracking drug defaulters, pose questions loudly, seeking the “person who is taking HIV Medication” This exposes people to un-consented disclosure, and possible stigma.
The table below summarizes the participants’ assessment of the knowledge, attitude and confidentiality practices of health workers in their respective sub-counties.
|Knowledge||Attitude (Willingness to Help)||Confidentiality|
|Juja/ Ruiru/ Thika||
|Limuru/ Lari/ Githunguri||
|Gatundu North/ Gatundu South||
One key factor in the provision of HIV services is the question of the proximity of services. If services are located far from PLHIV, it will cost them money and time, a situation that can discourage people from seeking services.
The participants from Juja, Ruiru and Thika Sub-counties indicated that the farthest they have to travel is to Thika town. Those from Kiambu and Kiambaa have to make trips to Mathari Hospital in Nyeri for sputum testing, and sometimes they have to seek other testing services in Nairobi. This is especially true when it comes to viral load testing and CD4 counts.
PLHIV in Kabete and Kikuyu are forced to seek services at Tigoni Hospital in Limuru while those in Gatundu (North and South) travel to Nairobi for services. Participants in Lari, Limuru and Githunguri indicated that they find it hard to transfer to facilities that are more convenient from them because they are required to disclose their status to relatives before the transfers are granted.
One needs to consider the geography of Kiambu County when deciding on where services should be located. Internal connectivity sometimes poses a challenge. Moving from one end the county to seek treatment in a well-equipped facility one may be forced to travel to Nairobi first. This takes time and costs money.
A related factor is the amount of time one takes to get services from a center. As indicated earlier, it takes an average of six months to get the results of the viral load tests. This is only true if the sample is not lost on the way, or if one is not asked to re-submit blood samples because the previous ones clotted.
PLHIV have to wait for three months before they can get the CD4 count results. This makes it for doctors to decide on how to handle the opportunistic infections that may present themselves.
When one visits the health facility, it takes anything between four and nine hours to get services. Most of this time is spent sitting and waiting for results of laboratory tests. That time represents lost income for most of the PLHIV, many of whom are casual workers.
Apart from distance and time, cost is a major factor in the provision of services. The participants in the FGDs reported that they use an average of One Thousand Three Hundred and Fifty Shillings per visit. Most of that cost goes into tests and buying of medicines for opportunistic infections. It also covers travel and food. It does not include the lost hours of productive work. By any standard this a huge cost for a person from a low-income household, since it represents more than 10% of the minimum wage in Kenya. This is despite the pledge by government to make HIV services free and accessible to all who need them.
A combination of the above and other factors can lead to a situation where the life of a PLHIV can be exposed to undue risks. The participants stated that there are in fact times when they felt that their lives were in danger. Below are some the reasons that led participants to feel that way.
Firstly, the issue of cost is critical. For many of the PLHIV being asked to go and buy drugs for opportunistic infections is the same as condemning them to death. They simply cannot afford those drugs. Other cannot even afford the bus fare that is needed for them to travel for treatment. Still for others, the kind of nutrition that is required for PLHIV is too much for them.
Secondly, the lack of reliable viral load testing services exposes the PLHIV to risk. The six months of waiting is too much for some. It creates anxiety and sometimes causes confusion in the way the PLHIV and treated.
Lastly, the now frequent industrial actions by medical professionals have taken a toll on PLHIV. If one is scheduled for treatment during a period of an on-going strike, they are in danger. The drugs they take are life-saving, and, therefore, having no access to the drugs can lead to non-adherence and then to death.
The PLHIV have made a raft of recommendations ranging from simple administrative measures to complex issues of policy. These recommendations include:
- Creation of suggestion boxes at the CCC so that PLHIV can enable them to voice their concerns in confidence.
- Creation of support groups for psychosocial support. Additionally, they would like to see the government facilitate the formation of community-based organizations for PLHIV to help them improve their lives.
- Ensure that the confidentiality of PLHIV is protected. This can be done by having counselors from areas other than the home area of the PLHIV.
- Comprehensive Care Center should provide comprehensive care. To begin with, the PLHIV need to be provided with food during their visits, especially if they will spend a long time waiting for services. Secondly, the results of their viral load tests should be printed at the CCC instead of the general laboratory as the case currently. In fact, the PLHIV have gone further to suggest that the CCC should be equipped with a functional lab so that they are not exposed to stigma. In the same vein, there should be a separate pharmacy for the PLHIV, preferably housed at the CCC.
- Related to the above theme of comprehensive services, the government should broaden the area of coverage of services under CCC to include testing and treatment for opportunistic infections.
Another way of doing this would be to waive or subsidize the insurance premium that is payable to the National Hospital Insurance Fund.
- The medical professionals should be equipped with the latest information on HIV Services including policy and treatment. A situation where the doctor or nurse relies on PLHIV for information on the latest news or have to read labels to know what to do next does not inspire confidence.
- The involvement of PLHIV as Community Health Volunteers should also be enhanced. PLHIV are often left out of this program. This should be followed by the improvement of remuneration and training of Community Health Volunteers.
- Development of infrastructure to ensure proximity of services should be one of the main objectives of the County Government of Kiambu. There should be the immediate investment in a viral load machine in Kiambu as a priority matter. This will reduce the pain of PLHIV who have to wait for more than six months to get results, or even worse those who end u not getting results in the first place due to loss or clotting of blood samples.
Apart from these recommendations from the PLHIV in Kiambu, it is important for those responsible for providing services in the various sub-county hospitals to create an environment that is free of harassment and stigma. Investigations into the alleged cases of mistreatment by health workers should be launched. Appropriate action should then be taken to ensure that this practice is ended.
Finally, efforts to address the challenge of HIV should be a collective one. There is a need for closer partnership between the county government people who are infected and affected by HIV. This partnership should help implement the existing legal, policy and administrative framework on HIV, including the Kenya AIDS Strategic Framework by National Aids Control Council. The partnership will also provide a platform for working with other county, national and international initiatives.
Overall Project Completion