As Heather and I set out to teach our ill-fated lesson on consequences and values; Corine set off for the clinic to wait with the woman, a mother of one of the preschoolers in the first of many cues or lines. We joined her and a village health motivator after adolescent camp. This woman was very sick from HIV and secondary infections, and had not yet started on ARVs- antiretroviral medications. There are three doctors at the clinic; all of them are from other African countries besides Swaziland. But there are many gatekeepers before you actually get to a doctor.
There are nurses who test your blood and make you answer many questions about your sexual history or past medical compliance with treatment. It is often at the discretion of these nurses if you are passed ahead to the next line and the doctor.
For many patients, this is not the first barrier to access care. They may have already seen a traditional healer with no success. They probably had to arrange and pay for transport (about 7 dollars in a country where most people are unemployed). They need to and find someone to care for their children. Many are sick with HIV or AIDS, but are refusing to be tested for the disease except as a last resort. And just feeling this ill can be a barrier to walking to the clinic or catching a bus.
This particular woman knows that she is HIV positive, but she has been taking an herbal remedy that falsely elevates her number of white blood cells. The white blood cells, specifically one called a CD4 cell, determines when a physician might start HIV medications or ARVs with a patient. So previously, this woman’s white blood cell count was too high to start therapy. In the US, we have many HIV drug regimens. In Swaziland there are only two; so once a patient has become resistant to both regimens, few treatment options remain. Another criteria that determines the staging or the severity of the disease is the number of infections a patient has had; and this staging is used to decided when to initiate HIV drug therapy. This too, is often in the hands of a gatekeeper and at the discretion of others. Corine told us a story of a man with HIV related dementia who had a total of 4 CD4 white blood cells, (under 550 CD4 cells treatment is initiated), and the nurse refused to push him along to start ARVs because with his mental status changes, he could not take them appropriately.
Starting ARV therapy in Swaziland becomes a justice issue. Patients may be excluded from drug therapy because they are illiterate and cannot follow a drug regimen independently or because they are experiencing the symptoms of HIV disease progression like dementia.
This particular lady had experienced multiple infections in recent months and despite a high white blood cell count was very sick and appeared to be in a later stage of HIV infection; however she may have waited all day in a line to see the ART (Antiretroviral therapy) doctor.
Corine called a nurse friend who suggested she use her power as an American missionary lady to jump the cue. Corine knows the ART doctor personally because he golfs at the club where she lives. He likes Americans and pointed out that most of the drugs stocking these clinics and the food for HiV patients comes from USAID. He was happy to meet us. He was knowledgeable and polite but obsequious. He talked about traveling to CA to see Rodeo drive. However, after meeting us he quickly pushed our patient ahead in the line, saw and counseled her. Still, even though she was very ill, she was sent for HIV counseling for three sessions before starting ARV’s. This is standard practice to improve compliance with the drugs and decrease drug resistance. However, practically speaking, this means 3 more days of cueing and a day’s wages in transport for a very ill person. Even if a patient makes it through all the cues and gatekeepers without a team of advocates, the physical and financial barriers to treatment are too great. And the consequence, for many is early death.
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