http://www.observer.ug/lifestyle/42-entertainment/43763-patients-health-workers-struggle-with-viral-load-results ( I first published this in this publication, below is the unedited version)
Health workers still do not know how to use and to communicate high viral load results and neither do patients understand the terms
By Esther Nakkazi
Viral load testing may be the gold standard for monitoring HIV treatment outcomes but countries that have scaled it up have an emerging problem; some health workers cannot interpret the laboratory results to appropriately manage patients on anti HIV drugs.
Laboratory reports with viral load results now have to be issued with a sad face or a smiling face to help health workers and patients interpret the outcomes.
Kenneth Mwehonge, the health policy programs officer at the Coalition for Health Promotion and Social Development (HEPS Uganda) says there is low level of knowledge of viral load among people with HIV and health workers.
“Interpretation of results is still a challenge. Health workers still do not know how to use them to communicate the high viral load and neither do patients understand the terms,” he says.
The confusion is especially evident because both parties are used to CD4 count, which has been well communicated over the years.
But children are checked often because they do not swallow their drugs diligently and appropriate dosage should be by weight which is usually not measured. “Children can refuse to take drugs and they do not understand why they should take these drugs, as well when they become teenagers they go into denial,” said nurse Nakintu.
If adherence counselling is done properly and the viral load is measured and its still high then there is drug failure and the patient has to be switched. But nurses are afraid to switch patients to second or third line HIV drugs which do not exit.
In Uganda, access to third line drugs is very limited and most of these are still not in public health facilities observed Mwehonge.
“I am scared to put patients on second or third line drugs. I am not going to change the life of this person. I want to keep them on first line because I do not know what else to give them,” said Nakintu.
“We sometimes have to create individualised regimens for patients who fail on first line drugs which is a problem. Some of these drugs are not in the country and have to be ordered from another country. From the time it is confirmed to be resistant to the time they are initiated it takes 10 months,” said Ajule.
This problem is not unique to Uganda. In rural South Africa more than half of the patients with persistent viremia are not switched to second line, and for those who are switched it happens with a delay of one year from an elevated viral load (Venables at al. 20th IAS Conference)
In the Swaziland viral monitoring program of the patients with detectable viral load, after 6 months only 5% were switched to second line, 51% were still on first line, 37% were lost to follow up, 9% had died (Jobanputra JAIDS 2014)
To solve the problem of viral load issues, experts suggest that more adherence counsellors should be trained, better monitoring and follow up should be done as well more advocacy is required.
Ultimately, everyone agrees that patient empowerment about viral load is key and campaigns to educate all stakeholders should start. Some centres of excellence like Infectious Disease Institute (IDI) in Kampala have already done it.
Patients have to ask physicians about their viral load which may be difficult at the beginning but it will be done. It needs to come down to the clients themselves, said Isaac Ssewanyana, the director at the Ministry of Health, Central Public Health Laboratories (CPHL)
Ssewanyana suggests that a guide on how to make a decision by health workers should be developed.
“The approach of empowering patients and educating them is what will change the scenario. Patients should have the anger to demand for their viral load results just as they ask after their CD4 count,” said Charles Brown an HIV prevention advocate with IDI.
ends
Health workers still do not know how to use and to communicate high viral load results and neither do patients understand the terms
By Esther Nakkazi
Viral load testing may be the gold standard for monitoring HIV treatment outcomes but countries that have scaled it up have an emerging problem; some health workers cannot interpret the laboratory results to appropriately manage patients on anti HIV drugs.
Laboratory reports with viral load results now have to be issued with a sad face or a smiling face to help health workers and patients interpret the outcomes.
Kenneth Mwehonge, the health policy programs officer at the Coalition for Health Promotion and Social Development (HEPS Uganda) says there is low level of knowledge of viral load among people with HIV and health workers.
“Interpretation of results is still a challenge. Health workers still do not know how to use them to communicate the high viral load and neither do patients understand the terms,” he says.
The confusion is especially evident because both parties are used to CD4 count, which has been well communicated over the years.
Experts have termed CD4 as ‘soldiers’ that protect them or improve their immunity but there is no equivalent for viral load yet in the local dialect.
CD4 cells are a type of white blood cells that play a major role in protecting the body from infection. They send signals to activate the body’s immune response when they detect intruders like bacteria. The higher the CD4 count the better for a patient.
“Patients ask after their immunity in terms of ‘soldiers’ (CD4) increasing and reducing,” said Carol Nakintu, a nurse at Kyosima clinic in a suburb of the capital, Kampala, that offers HIV care to patients in Kampala.
Over the years, patients have been told to know that the higher the CD4 count the healthier and loosely they have many ‘soldiers’ keeping them safe. It is the opposite for viral load because the lower the viral load the healthier.
The guidelines recommend routine viral load testing six months after initiating treatment and once a year thereafter.
In Uganda, viral load testing was taken up by most of the HIV treatment facilities only a year back and health workers say they did not think the demand would be high because everybody was using CD4 and they were comfortable with interpreting the results.
The viral load test measures the amount of HIV virus in the blood, showing if a patient is responding to treatment. If the virus is above 1000 copies/ml its high and detectable if it lower than 1000 copies/ml then its low or undetectable and there is virologic suppression.
CD4 cells are a type of white blood cells that play a major role in protecting the body from infection. They send signals to activate the body’s immune response when they detect intruders like bacteria. The higher the CD4 count the better for a patient.
“Patients ask after their immunity in terms of ‘soldiers’ (CD4) increasing and reducing,” said Carol Nakintu, a nurse at Kyosima clinic in a suburb of the capital, Kampala, that offers HIV care to patients in Kampala.
Over the years, patients have been told to know that the higher the CD4 count the healthier and loosely they have many ‘soldiers’ keeping them safe. It is the opposite for viral load because the lower the viral load the healthier.
Health workers say unlike CD4 count where HIV positive patients will know how many ‘soldiers’ are keeping guard, if they communicate viral load saying it is undetectable they will think that they are cured and do not need to take their drugs says Mwehonge.
In July 2013, the WHO passed HIV treatment guidelines to monitor HIV patients response to anti retroviral drugs and diagnosis of treatment failure.
In July 2013, the WHO passed HIV treatment guidelines to monitor HIV patients response to anti retroviral drugs and diagnosis of treatment failure.
The guidelines recommend routine viral load testing six months after initiating treatment and once a year thereafter.
In Uganda, viral load testing was taken up by most of the HIV treatment facilities only a year back and health workers say they did not think the demand would be high because everybody was using CD4 and they were comfortable with interpreting the results.
The viral load test measures the amount of HIV virus in the blood, showing if a patient is responding to treatment. If the virus is above 1000 copies/ml its high and detectable if it lower than 1000 copies/ml then its low or undetectable and there is virologic suppression.
Sad and Smiling face for Viral load results;
High viral load results show two things; either the patient is not taking their drugs diligently thus not adhering or there is drug resistance. They can at this point transmit HIV to a sexual partner. The laboratory results issued to such a patients report have a sad face.
While a low viral load means the virus is not affecting the health of the patient, they are less infectious and will not spread it to their sexual partner. The laboratory results have a sad face.
At the Uganda Ministry of Health Central Public Health Laboratories where about 600,000 samples of viral load are analysed annually, Charles Kiyaga, the national program coordinator says besides the gloomy and smiling faces on the patients’ reports they also provide footnotes and mentorship to health workers to be able to interpret the results.
When the lab report has a gloomy face, they also encourage the patient to get adherence support before they declare treatment failure and switching to second line HIV medicines that are more expensive.
In 2015, Central Public Health Laboratories of the 10,113 patients eligible for a second viral load test, only 66 percent of patients with a detectable viral load received their results for the second test.
This is informing us that the data is not utilised for patient management or some health facilities have no capacity to follow up patients, said Kiyaga. The viral load test costs about $20 and CPHL makes it available to all HIV patients in Uganda.
The Médecins Sans Frontières (MSF) laboratory in Arua, in North Western Uganda, by January 2016, the lab was serving 16,000 patients and of these 17-21 percent had a detectable viral load.
Ephraim Ajule, viral load activity manager, at the MSF lab says they advise the patients with a detectable viral load to undergo adherence counselling.
“When it comes to adherence it is the counsellors who know what to say and what to do,” says Ajule. But many health facilities including theirs have few or no counsellors to do adherence counselling. It is done by nurses.
Testing is repeated annually for patients with undetectable viral load and every six months if the patient is on second line drugs and for children. The science is that after the first year of initiating treatment patients viral load is usually undetectable.
High viral load results show two things; either the patient is not taking their drugs diligently thus not adhering or there is drug resistance. They can at this point transmit HIV to a sexual partner. The laboratory results issued to such a patients report have a sad face.
While a low viral load means the virus is not affecting the health of the patient, they are less infectious and will not spread it to their sexual partner. The laboratory results have a sad face.
At the Uganda Ministry of Health Central Public Health Laboratories where about 600,000 samples of viral load are analysed annually, Charles Kiyaga, the national program coordinator says besides the gloomy and smiling faces on the patients’ reports they also provide footnotes and mentorship to health workers to be able to interpret the results.
When the lab report has a gloomy face, they also encourage the patient to get adherence support before they declare treatment failure and switching to second line HIV medicines that are more expensive.
In 2015, Central Public Health Laboratories of the 10,113 patients eligible for a second viral load test, only 66 percent of patients with a detectable viral load received their results for the second test.
This is informing us that the data is not utilised for patient management or some health facilities have no capacity to follow up patients, said Kiyaga. The viral load test costs about $20 and CPHL makes it available to all HIV patients in Uganda.
The Médecins Sans Frontières (MSF) laboratory in Arua, in North Western Uganda, by January 2016, the lab was serving 16,000 patients and of these 17-21 percent had a detectable viral load.
Ephraim Ajule, viral load activity manager, at the MSF lab says they advise the patients with a detectable viral load to undergo adherence counselling.
“When it comes to adherence it is the counsellors who know what to say and what to do,” says Ajule. But many health facilities including theirs have few or no counsellors to do adherence counselling. It is done by nurses.
Testing is repeated annually for patients with undetectable viral load and every six months if the patient is on second line drugs and for children. The science is that after the first year of initiating treatment patients viral load is usually undetectable.
But children are checked often because they do not swallow their drugs diligently and appropriate dosage should be by weight which is usually not measured. “Children can refuse to take drugs and they do not understand why they should take these drugs, as well when they become teenagers they go into denial,” said nurse Nakintu.
If adherence counselling is done properly and the viral load is measured and its still high then there is drug failure and the patient has to be switched. But nurses are afraid to switch patients to second or third line HIV drugs which do not exit.
In Uganda, access to third line drugs is very limited and most of these are still not in public health facilities observed Mwehonge.
“I am scared to put patients on second or third line drugs. I am not going to change the life of this person. I want to keep them on first line because I do not know what else to give them,” said Nakintu.
“We sometimes have to create individualised regimens for patients who fail on first line drugs which is a problem. Some of these drugs are not in the country and have to be ordered from another country. From the time it is confirmed to be resistant to the time they are initiated it takes 10 months,” said Ajule.
This problem is not unique to Uganda. In rural South Africa more than half of the patients with persistent viremia are not switched to second line, and for those who are switched it happens with a delay of one year from an elevated viral load (Venables at al. 20th IAS Conference)
In the Swaziland viral monitoring program of the patients with detectable viral load, after 6 months only 5% were switched to second line, 51% were still on first line, 37% were lost to follow up, 9% had died (Jobanputra JAIDS 2014)
To solve the problem of viral load issues, experts suggest that more adherence counsellors should be trained, better monitoring and follow up should be done as well more advocacy is required.
Ultimately, everyone agrees that patient empowerment about viral load is key and campaigns to educate all stakeholders should start. Some centres of excellence like Infectious Disease Institute (IDI) in Kampala have already done it.
Patients have to ask physicians about their viral load which may be difficult at the beginning but it will be done. It needs to come down to the clients themselves, said Isaac Ssewanyana, the director at the Ministry of Health, Central Public Health Laboratories (CPHL)
Ssewanyana suggests that a guide on how to make a decision by health workers should be developed.
“The approach of empowering patients and educating them is what will change the scenario. Patients should have the anger to demand for their viral load results just as they ask after their CD4 count,” said Charles Brown an HIV prevention advocate with IDI.
ends
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