Ramifications of the disability grant for PLHIV
Although employment was desired by the HIV-positive participants, it was a reality for very few. In 2007, half of the KSPS sample (50%) was unemployed (Table ); 71% of the households in the KSPS, were receiving a social grant as a part of their income, whereas 41% received a disability grant (Table ). Most of the participants in the qualitative study were unemployed. They said that they struggled to maintain good health, as they could not afford to buy food. Sometimes hunger affected their adherence to ARV, as they could not take medication on an empty stomach. Further, the participants noted that it was important to adjust conditions of employment to accommodate the healthcare needs of PLHIV.
Selected figures from the Khayelitsha Select Panel Survey, N = 216
A male participant highlighted the value of combining the provision of ARVs with employment in order to ensure "healthy living" for PLHIV:
"I am fine. I can work. The government must accept us (PLHIV) ... The government must produce more tablets ... We must get stronger ... We are not dead already! ... They must give us jobs, and they must treat us like anyone else (a person that is not HIV positive). They must not think that an HIV-positive person is going to die tomorrow. They are not giving us (PLHIV) opportunities to be somebody! ... So the government must not wait for somebody to die. The government must not wait until a person's CD4 count is less than 200, because that person cannot do anything! You understand? The government must look after and support PLHIV. I can get sick two, three times a week, but I do not want to be sick. I do want to get a job." (HIV-positive man, 44 years old)
This kind of sentiment was repeated throughout the narratives, particularly among the HIV-positive men. Another male participant felt the same kind of frustration with the government and spoke of the lack of employment opportunities in South Africa. He shared that in his household of nine people, only his retired mother received an income through her pension:
"The government is trying to make employment for everyone ... This HIV thing doesn't get cured, so the government must take care of its people. But the government can't afford to support us. My mother supports me now ... But at least with that grant, it was somewhat good. At least I could eat." (HIV-positive man, 50 years old)
Throughout the interviews, unemployment among PLHIV who had regained health from being sick with AIDS (through ARV medication) was a major theme. Further, the participants indicated that although they were not disabled, there were certain limitations to the kind of work they were able to do due to their HIV status, and to taking ARVs. For example, some participants said that they were reluctant to work night shifts, or to work outdoors, because they were more susceptible to contracting opportunistic infections due to the cold; night shifts also compromised their ability to adhere strictly to the ARV treatment regimen. In particular, participants noted that side effects from ARVs, like swollen feet, painful joints and nausea, limited the kind of work they were able to do as some people could not stand for long periods of time, or walk far distances to get to work.
The majority of the participants said that they were healthy and able bodied, but lamented the fact that they were unemployed because there was no available work:
"What makes me unhappy is the fact that I'm not working. If I can get a job, I will have a positive thinking. Now I am like somebody who is crippled, who is unable to do anything ... But I am healthy and willing to work! If you are working, you will have a positive thinking, and then you can focus." (HIV-positive man, 35 years old)
Most of the participants said that unemployment and poverty were their main concerns. At the same time, however, their HIV status was seen as an additional barrier to accessing the labour market, and as long as they were outside the labour market, they perceived managing their HIV status in a positive way - maintaining a healthy diet, for example - to be difficult. The disability grant was therefore viewed as a temporary way out of this vicious cycle of poverty and unemployment.
The majority of the grant was used to contribute towards general household expenses, and as such, it was sometimes the main or only source of income for both the HIV-positive individuals and members of their household. Of those receiving disability grants (KSPS), 98% used the grant to cover general (household) living expenses. The qualitative study also confirmed this finding, where general household expenses dominate the use of the grant money. With reference to the qualitative interviews, for most participants, the disability grant not only covers their individual and household living expenses, but also those of the extended family.
This need for and use of the disability grant is one of the factors putting people who were "granting" under pressure to ameliorate financial scarcity in their own households:
"The problem is that we have overcrowded families with huge numbers of children who are depending on one person who is "granting". My wife's and my own parents are both "granting", and it is the same situation. My mother is retired, but it is not easy for her to support me, because there are other people she lives with and they depend on her grant." (HIV-positive man, 35 years old)
Several of the PLHIV in the in-depth study indicated that they needed the grant in order to eat healthy food, which was seen as necessary for a person on ARVs. Furthermore, not having any food to eat was the main reason given for discontinuing ARV treatment, which will be further dealt with in next section.
Disability grant termination and ARV adherence
Our findings indicate that the loss of income when disability grants are not renewed had a substantial impact on both the individual living with HIV and the household. However, the survey data did not indicate that PLHIV would choose poor health over grant loss. In the KSPS, not a single individual indicated that he/she would "stop taking ARVs" to "get (back) (his/her) disability grant" [27
]. This finding was further supported by the qualitative findings from this study, although PLHIV certainly felt conflicted about the prospects of losing their disability grant.
One of the participants gave this description of what happens if the grant is not renewed:
"You become sick once you lose your grant, because you become depressed. After that, your CD4 count drops, because you don't know what you're going to eat. People become sick all the time because you need to take your medication. But, if you don't have food, it's difficult, and you cannot go back to your family. No one will help you. If you are unemployed, you will experience problems because you have to buy food and clothing and pay for funerals with that grant." (HIV-positive woman, 28 years old)
Some 42% of the KSPS respondents had experienced losing their disability grant. Ninety percent of those for whom the disability grant had been terminated, reported that it had a substantial impact on the household economy. The qualitative interviews clearly revealed that the loss of disability grants as a result of improved health had a significant impact on physical and emotional health and also led to high levels of stress. As the previous quote illustrates, losing the grant also has direct implications for PLHIV as a healthy diet may no longer be accessible, which in turn undermines adherence to ARVs. This was confirmed in all the interviews with the doctors who assessed disability grant eligibility and, as discussed shortly, placed pressure on doctors to ameliorate conditions of poverty through awarding the grant even when PLHIV did not strictly fall in to the grant eligibility criteria.
Discontinuation of ARVs in order to maintain and, in some cases, to re-qualify for the disability grant did not appear to be a common strategy. The actual ARV adherence rate was reported to be high in the KSPS; less than 3% of the respondents (n = 6) stipulated that they had stopped taking ARVs in 2007. However, in the qualitative research, each participant referred to "other" people who had stopped taking their ARVs in order to qualify for the grant and ameliorate their economic problems. The quantitative study supported this finding: 10.2% of the respondents in the KSPS agreed that "it is a common strategy for HIV-positive people to stop taking ARVs in order to get sick and get the disability grant back". One strong recurrent argument during the interviews was that if you had been severely ill from HIV and AIDS, you were not prepared to go back to a life of being sick in bed.
Thus, adherence to drugs in order to maintain health was important for the participants, as expressed by this male participant:
"Oh no, I take my drugs every day, because I do care about my treatment and all that since I started to take my treatment ... It's about my life!" (HIV-positive man, 44 years old)
The participants stressed that they would not consider undermining their health by failing to adhere to ARVs. That said, the qualitative interviews suggested a number of subtle ways in which PLHIV may "tip the scale" to lower the CD4 count without stopping ARVs completely. For example, increased alcohol consumption just before attending the clinic for a regular check up of the CD4 count was reported in the interviews. Similarly, some of the doctors reported that skipping some days of treatment in order to become slightly sick and reduce their CD4 counts was a strategy that PLHIV adopted to prolong the period of eligibility for the disability grant.
As indicated by this quotation, most doctors were of the opinion that their patients practised a form of "circumstantial" non-adherence:
"My patients don't take the tablets every day; they play with their health. The cleaners here at the clinic find lots of tablets dumped daily, in the yard, toilet. It is almost every day that one of my patients will tell me that they saw someone in the bathroom who dropped a handful of tablets in the toilet. Sometimes, I hear them when they discuss outside about manipulating the number of tablets. They calculate how many tablets they should be left with and they educate one another outside. They discuss among themselves that if you take your tablets every day, you will get better and your CD4 count will go up and that's when the grant will stop. So they play with their health." (Male doctor)
Some PLHIV confessed that they did not always take their drugs on a regular basis. The next quote highlights the complexity of securing health in the context of poverty and unemployment, particularly given the importance of food for ARV adherence:
"I just tell the doctors, sometimes, when I am hungry, I don't take my ARV treatment, I just leave the tablets lying there ... and then I'll see if I have any food to eat the following day." (HIV-positive woman, 30 years old)
The qualitative data confirmed that PLHIV would give priority to their health and risk losing the grant, but that it was difficult to take the drugs on an empty stomach. Unemployment, therefore, has practical consequences for the participants' experience of poverty and their ability to maintain good nutrition alongside their ARV regimens. During one interview, a male participant laughingly stated, in reference to his clinic:
"They keep pumping me with medication, so they must keep pumping me with food as well!" (HIV-positive man, 50 years old)
Doctors' role and their relationship with PLHIV
There are a number of criteria for qualifying for a disability grant, including being between 18 and 59 years of age, holding South African citizenship or refugee status, and permanently residing in South Africa. These requirements apply across all social welfare grants in South Africa; the distinction in qualification criteria for disability grants lies in the medical assessment, in which a qualified medical professional must confirm the candidate's "disability" [14
]. Medical doctors, therefore, have authority to decide whether or not PLHIV are eligible for a grant, and to stipulate the duration of the grant award. In light of the findings just outlined, which point to the interlinked nature of physical health with financial security, doctors play a pivotal role in shaping the physical and financial well-being of PLHIV.
Doctors are required to write a grant assessment in order for PLHIV to apply for disability grants; however, many doctors stated that the particularities of the assessment were unclear, and that the complex interplay of physical health with financial and psychological well-being made it even more difficult to base decisions on biomedical indicators of health like CD4 counts. The absence of a clear assessment framework gave them some flexibility in evaluating grant eligibility, but it also increased the pressure placed on doctors by HIV-positive clients. Some doctors acknowledged that in addition to health criteria, like CD4 counts, they also used social criteria when deciding who qualifies for a disability grant. Doctors reported feeling uncomfortable and pressured to recommend disability grants for PLHIV.
They said that expectations around the disability grant was the most important challenge facing their daily work:
"The most difficult thing about being a doctor is that you have to write disability grants. It is like you are God; you just have to look at the person's face and decide about whether they qualify or not." (Female doctor)
The participants echoed this sense that the doctors were like God, dictating the quality of life for an unemployed HIV patient. They also felt uncomfortable with the extent to which doctors shaped their lives. The participants in the qualitative study reported feeling helpless when confronted with the doctor's inherent power to make decisions that affected their financial and physical well-being. The absence of clear guidelines for recommending the disability grant reinforced the participants' perception that doctors made ad hoc decisions that were inconsistent, and dependent on subjective factors. When discussing the extension of the original disability grant time period, one participant stated:
"It depends of the heart of the doctor sometimes. If the doctor has got your sympathy, then he can do that." (HIV-positive woman, 28 years old)
In the survey, 51% of the respondents attributed the loss of their disability grants to their doctors' decisions that they were no longer eligible for the grant, and 29% stated that their applications were refused. Thus, the doctors' assessments emerge as the most important reason for terminating the grant from the perspectives of the patients. Before the era of universal access to ARVs, a permanent disability grant was provided to PLHIV who were in the final stage of AIDS. In our study, we found that doctors varied greatly in the criteria they used to assess eligibility and whether they prescribe "temporary" or "permanent" grants.
In the next quote, the doctor describes the way in which doctors reach decisions around disability grant eligibility:
"Nationally there are no clear guidelines. It varies from province to province, and even in this province, it varies from doctor to doctor. Some doctors are hesitant to write a disability grant while others give just about anyone a disability grant. Some doctors still prescribe permanent disability grants (duration five years), while other doctors never do it. Locally, there has been some sort of agreement, if your CD4 count is less than 200, then you qualify for a grant; however, some doctors will give it to you for six months and other doctors will give you a 12-month grant." (Female doctor)
As indicated, the rationale for prescribing grants differed between doctors, which reinforced the participants' belief that the decisions regarding disability grant eligibility and duration were ad hoc and inconsistent. For example, some employed patients with high CD4 counts were still receiving disability grants, while unemployed patients with low CD4 counts were unable to receive the grant.
Some of the doctors believed that some of their patients use HIV as a way to get grants. These doctors strongly believed that unemployment was the problem and that the measures should be focused on unemployment instead of disability. In their logic, a disability grant was the wrong policy response to the problems caused by unemployment. On the other hand, they were aware that the disability grant gave new opportunities to PLHIV in an everyday situation where it was hard to manage the economic demands that the household was facing.
This also puts doctors under pressure to balance the biomedical criteria for grant eligibility against other criteria, such as the individual's circumstances, unemployment and the poverty in which many HIV-positive South Africans live:
"I always enquire about their employment. If they are employed, and their general health condition is good, I do not offer [a] disability grant. In cases where there is no income through employment, I offer [a] disability grant. I have offered disability grant[s] to all those who start ARVs regardless of their CD4 count. I have even prescribed ARVs for patients whose CD4 count is above 200. I base my assessment for initiation of ARVs on the general health condition of the patient." (Female doctor)
Another doctor, however, was more reluctant to incorporate social dimensions into her assessment of an individual's disability grant eligibility:
"Sometimes they bring their kids and you can see that they are hungry. But then again, the guidelines state that you cannot give this person a disability grant. You know what is going on at home and that there are no social workers to take care of the person. You know that you can help, but then at the same time you do not want to be seen as the "fraudulent" doctor. I guard against that because one day when you give that disability grant and SASSA decided to do an audit - then you may be seen as fraudulent. But honestly speaking, I have been "fraudulent", two or even three times, not a lot; I mean I am very careful. They (HIV-positive patients) think I have empathy and understanding, because where they come from is probably where I come from." (Female doctor)
The participants in the in-depth interviews were unclear about the way the doctors decided on grant eligibility and the way the social services managed the grants. Some of the participants described their frustration with corruption in the welfare system, referring to officials working in the social security agency who demanded the first month of the disability grant payment as payment for them assisting in the disability grant application procedure. Some PLHIV clearly indicated that the application procedure was difficult and suggested that it would be a useful to have professional people assisting them in the process.
The narratives included accounts of people who had received a disability grant in the 1990s and were still accessing it even though their health was good due to ARV treatment. They reported that these people on "long-term grants" had received the grant from a friendly doctor at a time when some doctors interpreted the rules to mean that PLHIV without access to treatment would qualify for permanent grants. This was before the roll out of ARVs.
In most cases, grant recipients were not aware of how long they had the grant, and a few of the participants seemed to wonder why they still received the grant. One recurrent story was linked to people who got the grant for six months. We were told that they could not apply for a new grant period before the previous one had ended, and then it took some months before they got a new grant. As a result, the story of a person receiving a grant might sound like this: six months with a disability grant, then a period without a grant, and then another six months with a grant again, and so on. One of the in-depth participants, an HIV-positive 44-year-old man, stated, "The grant is coming and going."