ACW Interview: Ms Rachel Sethosa
This is an ACW interview with Ms. Rachel Sethosa, project manager at Takalani Nana Home Care Centre, located in Polokwane, South Africa.
ACW: The vast majority of people living with HIV/AIDS (PLWHA) do not have access to antiretroviral (ARV) drugs. Can you comment on current progress in scaling up of ARV provision in your local context? Are ARVs available? What are the consequences of the delay in expanding ARV access?
RS: It is true; the majority of positive people here in South Africa are not on antiretrovirals. In Polokwane there is only one hospital where you can get the drugs. The scaling up process has generally been slow. In my group only two people were on ARV’s and they have both died. They said they waited too long. So who knows if the drugs are really the answer? In fact the truth is that we are very scared to go onto the drugs. The result is that people continue to die.
ACW: Which care and treatment options do you think are likely to add years or quality to someone’s life/ your life?
RS: I have been living with HIV for the past 16 years and I have still very well. Firstly information is the key to success. This helps you to take care of yourself. Most of us don’t have the right information. This is especially so in the rural areas. At least here in the city we are better off.
Counselling is very important. Without ongoing counseling I would not have made it so far. This helps me make informed decisions about my life. It also helps with acceptance of the situation and myself. We actually discriminate against ourselves and practice self stigma! We think that people look down on us, because HIV is associated with sex and we have feelings of shame and we isolate ourselves! It took me a long time to accept myself, but counseling really helped.
Basic things like eating a balanced diet where possible. This is very difficult in the face of poverty.
People must avoid re - infection and also STI’s, so using a condom is important. Again this is very hard for women, because we Africans are too scared to tell our men to do that. We haven’t been taught to speak out and we suffer because of that. That’s how I got HIV! My husband gave it to me. I am glad that he has died, I am sorry to say that but it is true. Actually I knew that he had girl friends in Joburg, but when he came home I didn’t insist on the condom, so I suppose I did it to myself.
Reducing stress is also important. Support groups help with that. Just being able to share your experiences with someone else who is positive helps a lot. That’s one of the things that we do here. We run a lot of support groups throughout the Polokwane and surrounding area.
ACW: What are the reasons for the rapid progression towards AIDS – related illnesses in developing countries?
RS: I think that it is mainly because of a lack of food, poverty, poor living conditions. Hygiene is bad and people are exposed to infections. Poor infra structure. In Africa there are lost of mobile populations, people still have to go and work in the cities. We have lots of people coming across the borders. We don’t have enough resources to share with everybody.
Of course a lack of information about what to do also adds to the problem. Many people don’t have access to co- trimoxazole and often don’t go to the clinics for treatment of opportunistic infections. They are very shy to tell the nurses that they are positive and so don’t get the right treatment. Nurses sometimes think that we are bad because we are positive and they tell others about our status.
As I mentioned earlier, the gap between men and women remains a problem. Women are not allowed to talk about sex here so re - infection remains a problem.
ACW: What measures can you recommend that may alleviate this more rapid progression?
RS: Addressing food security, infrastructure and poverty will definitely help. We as PLWA also need to be brave. We must go for treatment and take it! We have lots of tablets lying in our drawers we don’t always finish the treatment that we get. Empowerment of women is vital? If this doesn’t happen all these other things will be for nothing!
Other measures have been mentioned for example being open about ones status, acceptance by family and friends. Plenty of quality counseling.
ACW: Is adequate or appropriate attention given at National or international level to preventing and treating these conditions?
RS: No.
ACW: Would greater attention add years or quality to PWHA lives?
RS: Definitely.
ACW: In what ways do you think affected people can be empowered to take more control of their own health? What impact do you think this will have on their day to day lives?
RS: As I have said through information, self knowledge and acceptance. Support from friends and family. Good nutrition, exercise, no alcohol or tobacco. Work is very important. You need to keep busy. Helping others is very good. It takes your mind off yourself. Accessing home based care. Disclosure is cleansing.
We as adults must be open to out children and be role models. Be ambassadors.
ACW: What is your feeling about the initiatives and policy activities in 2005? Do you consider 2005 to be a significant year? What are your hopes?
RS: I don’t know much about the MDG and G8 pressure, but I do think that 2005 is a significant year in SA. Treatment is becoming more available, it’s slow but it is coming.
I hope that there will soon be a cure! Also that counseling should be strengthened and that Home Based Care would be available to all. I also hope that rural communities would be able to access more information so that they can protect them selves Also that women would be empowered and stigma removed.
ACW: Is there anything else you would like to say?
RS: I would just like to say that to be HIV positive is not the end of the world. You can live with the virus!The important thing is to take care of yourself and the next person and you will live long. I have been positive for 16 years now and I am still going strong!
This interview was conducted by an HDN Key Correspondent, June 2005. To contact the HDN Key Correspondent team, please email correspondents@hdnet.org
ACW: The vast majority of people living with HIV/AIDS (PLWHA) do not have access to antiretroviral (ARV) drugs. Can you comment on current progress in scaling up of ARV provision in your local context? Are ARVs available? What are the consequences of the delay in expanding ARV access?
RS: It is true; the majority of positive people here in South Africa are not on antiretrovirals. In Polokwane there is only one hospital where you can get the drugs. The scaling up process has generally been slow. In my group only two people were on ARV’s and they have both died. They said they waited too long. So who knows if the drugs are really the answer? In fact the truth is that we are very scared to go onto the drugs. The result is that people continue to die.
ACW: Which care and treatment options do you think are likely to add years or quality to someone’s life/ your life?
RS: I have been living with HIV for the past 16 years and I have still very well. Firstly information is the key to success. This helps you to take care of yourself. Most of us don’t have the right information. This is especially so in the rural areas. At least here in the city we are better off.
Counselling is very important. Without ongoing counseling I would not have made it so far. This helps me make informed decisions about my life. It also helps with acceptance of the situation and myself. We actually discriminate against ourselves and practice self stigma! We think that people look down on us, because HIV is associated with sex and we have feelings of shame and we isolate ourselves! It took me a long time to accept myself, but counseling really helped.
Basic things like eating a balanced diet where possible. This is very difficult in the face of poverty.
People must avoid re - infection and also STI’s, so using a condom is important. Again this is very hard for women, because we Africans are too scared to tell our men to do that. We haven’t been taught to speak out and we suffer because of that. That’s how I got HIV! My husband gave it to me. I am glad that he has died, I am sorry to say that but it is true. Actually I knew that he had girl friends in Joburg, but when he came home I didn’t insist on the condom, so I suppose I did it to myself.
Reducing stress is also important. Support groups help with that. Just being able to share your experiences with someone else who is positive helps a lot. That’s one of the things that we do here. We run a lot of support groups throughout the Polokwane and surrounding area.
ACW: What are the reasons for the rapid progression towards AIDS – related illnesses in developing countries?
RS: I think that it is mainly because of a lack of food, poverty, poor living conditions. Hygiene is bad and people are exposed to infections. Poor infra structure. In Africa there are lost of mobile populations, people still have to go and work in the cities. We have lots of people coming across the borders. We don’t have enough resources to share with everybody.
Of course a lack of information about what to do also adds to the problem. Many people don’t have access to co- trimoxazole and often don’t go to the clinics for treatment of opportunistic infections. They are very shy to tell the nurses that they are positive and so don’t get the right treatment. Nurses sometimes think that we are bad because we are positive and they tell others about our status.
As I mentioned earlier, the gap between men and women remains a problem. Women are not allowed to talk about sex here so re - infection remains a problem.
ACW: What measures can you recommend that may alleviate this more rapid progression?
RS: Addressing food security, infrastructure and poverty will definitely help. We as PLWA also need to be brave. We must go for treatment and take it! We have lots of tablets lying in our drawers we don’t always finish the treatment that we get. Empowerment of women is vital? If this doesn’t happen all these other things will be for nothing!
Other measures have been mentioned for example being open about ones status, acceptance by family and friends. Plenty of quality counseling.
ACW: Is adequate or appropriate attention given at National or international level to preventing and treating these conditions?
RS: No.
ACW: Would greater attention add years or quality to PWHA lives?
RS: Definitely.
ACW: In what ways do you think affected people can be empowered to take more control of their own health? What impact do you think this will have on their day to day lives?
RS: As I have said through information, self knowledge and acceptance. Support from friends and family. Good nutrition, exercise, no alcohol or tobacco. Work is very important. You need to keep busy. Helping others is very good. It takes your mind off yourself. Accessing home based care. Disclosure is cleansing.
We as adults must be open to out children and be role models. Be ambassadors.
ACW: What is your feeling about the initiatives and policy activities in 2005? Do you consider 2005 to be a significant year? What are your hopes?
RS: I don’t know much about the MDG and G8 pressure, but I do think that 2005 is a significant year in SA. Treatment is becoming more available, it’s slow but it is coming.
I hope that there will soon be a cure! Also that counseling should be strengthened and that Home Based Care would be available to all. I also hope that rural communities would be able to access more information so that they can protect them selves Also that women would be empowered and stigma removed.
ACW: Is there anything else you would like to say?
RS: I would just like to say that to be HIV positive is not the end of the world. You can live with the virus!The important thing is to take care of yourself and the next person and you will live long. I have been positive for 16 years now and I am still going strong!
This interview was conducted by an HDN Key Correspondent, June 2005. To contact the HDN Key Correspondent team, please email correspondents@hdnet.org
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