30 April 2008
Eye complications is a rising issue affecting people living with HIV. Despite the growing international attention to desisabled people's rights, African governments and Aids policy makers rarely consider disability issues when formulating their strategic plans, writes Bamuturaki Musinguzi
For fear of the stigma, discrimination and pointing fingers that usually come with HIV/Aids she decided to live in denial for ten years - a decision that eventually contributed to her blindness.
Christine Kyaterekera says: "I do not regret living in denial," adding: "I feared going to hospital. I do not know whether I was afraid of knowing the truth, but I feared discrimination if people knew I had got HIV/Aids. I lived in self denial for ten years."
Kyaterekera, who has lived with HIV for 17 years, says that with the self denial and no treatment, blisters and a dry cough intensified. She only got relief after her family decided she had to go for HIV testing. "On December 31, 2000 we held a family meeting and my children resolved that I go for HIV testing, which proved I was HIV positive and diagnosed with TB in January 2001. I took TB drugs for eight months and I recovered."
Talking to Daily Monitor at the sidelines of the second Meeting of the Africa Campaign on Disability and HIV and Aids in Kampala, Kyaterekera, who has gone public about her status recalls that in early 2002 she started to get en eye problem. "I went to hospital and the health workers claimed it was an allergy caused by the drugs I was taking or HIV. It is then that my husband got very sick and re-infected me with TB. I was put on TB treatment again, but my eye pain persisted."
"On April 1, 2003 I woke up only to realise that my left eye had gone blind. I went to hospital and the doctor told me that once the virus gets to the eyes they don't easily recover," Kyaterekera recalls.
"By then, the right eye was dimming-up because I could see someone's face only. I was then advised to start on ARVs. Unfortunately my right eye never recovered and I got very ill in May 2003 that came with a mental problem for six months. I don't recall what happened in this period. My husband's death came in November 2003."
Kyaterekera, the 49-year-old widow and mother of seven later joined the NGO, Blind But Able (BBA) where she has learnt to use the cane, knitting and Braille.
"My biggest challenge was to get used to my blind status and how to look after my young children, who were traumatised. Though I have now got used to my disability my experience is that whenever parents get HIV, it's the children that suffer most with people pointing fingers at them saying 'Your mother has HIV'. My neighbours discourage their children from playing with mine for falsely fearing being infected. But no one has pointed fingers at them due to my blindness."
According to World Health Organisation (WHO), nearly 34 million people are currently living with HIV/Aids worldwide and ocular complications are common, affecting 50 percent to 75 percent of all such patients at some point during the course of their illness. Cytomegalovirus retinitis is by far the most frequent cause of vision loss in patients with Aids.
"Although the prevalence of cytomegalovirus retinitis is decreasing in industrialised countries because of the widespread availability of highly active antiretroviral therapy, between 10 percent and 20 percent of HIV infected patients worldwide can be expected to lose vision in one or both eyes as a result of ocular cytomegalovirus infection," Philippe G. Kestelyn and Emmett T. Cunningham Jr, wrote in a paper titled, HIV/Aids and Blindness published in the WHO Bulletin in 2001.
"Less frequent but important causes of bilateral vision loss in-patients with HIV/Aids include varicella zoster virus and herpes simplex virus retinitis, HIV-related ischaemic microvasculopathy, ocular syphilis, ocular tuberculosis, cryptococcal meningitis, and ocular toxic or allergic drug reactions," Kestelyn and Cunningham Jr, added. "At present, most patients with HIV/Aids in developing countries who lose their vision have a very limited life expectancy.
As antiretroviral therapy makes its way to these countries however, both life expectancy and the prevalence of blindness related to HIV/Aids can be expected to increase dramatically," they warn.
Although Kyaterekera is on ARV treatment through The Aids Support Organisation (Taso), eighty million people are being excluded from the fight against HIV and Aids in Africa simply because they are disabled.
They make up a large proportion of people in the poorest communities, which are also severely affected by HIV and Aids. Despite their exclusion, persons with disabilities (PWDs) are both willing and able to positively contribute to the response to the pandemic. The Uganda Aids Commission does not have disaggregated figures to do with PWDs and HIV/Aids.
The National Union of Disabled People of Uganda (NUDIPU) in partnership with the Secretariat of the African Decade and Handicap International organised the second Meeting of the Africa Campaign on Disability and HIV and Aids in Kampala at Hotel Africana from March 11 - 13, 2008 under the theme: Making Access for All a Reality.
This meeting provided an important opportunity to review collective progress towards achieving the Africa Campaign objectives, to exchange tools and lessons learned as well as to plan involvement in the International Conference on Aids and STI in Africa (ICASA) in Dakar, Senegal in December 2008.
PWDs in Africa are at equal or greater risk of HIV infection, compared to their non-disabled peers. For many, being disabled means that they are less likely to marry and more likely to have several sexual partners. Disabled women, girls and boys are also more likely to be victims of sexual violence. Other factors such as physical dependence, life in institutions and lack of access to legal rights, also make them particularly vulnerable to infection and abuse.
Some PWDs in Africa receive blood transfusions; others might use injection drugs, still others may seek services from traditional healers whose practices could facilitate HIV transmission. These risk factors parallel those of the general population. PWDs have poor access to HIV/Aids information and services, according to the Africa Campaign on Disability and HIV/Aids. Only 1-2 per cent of disabled children receive an education, therefore most miss out on school based education programmes.
The Africa Campaign on Disability and HIV and Aids aims to reduce the vulnerability of PWDs to the impact of HIV and Aids. The Africa Campaign is a unifying umbrella under which disabled people's organisations, organisations of people living with HIV and Aids, NGOs, HIV and Aids services organisations, researchers, activities and other citizens work collectively to achieve: Equal access for PWDs in Africa to information and services on HIV and Aids. And a coordinated response involving persons with disabilities in African countries to achieve inclusive national HIV and Aids policies and programmes.
The Africa Campaign is led by the Secretariat of the African Decade for Disabled Persons (1999 - 2009) and Handicap International and operates through individual commitments and networks in African and worldwide.
Speaking from a disability social activist perspective, George Onyango of the African Deaf Union/Deaf Social Counseling, Kenya, said, "The blind always encounter communication barriers when they have to visit health centres," adding, "There is also a bad attitude towards the PWDs. The public thinks we do not have sexual desires; we cannot get married and have children, and get employed. Give PWDs opportunities and see what they can do."
In her keynote address titled: "Rationale for mainstreaming people with disabilities in the response to HIV/Aids on the African continent," the South African Member of Parliament, Hendrietta Bogopane-Zulu, who is visually impaired, said: "We people with disabilities know what stigma can do on any group of persons. We have experienced it and gone the full cycle of discrimination and denied our rights. We can give a hand to persons living with HIV/Aids in determining, highlighting and raising the bar."
Experts also noted that Africa has not documented the best practices that PWDs have gone through the years. PWDs are left out of HIV/Aids policies and programming. Despite growing international attention to disabled people's rights, African governments and Aids policy makers rarely consider disability issues when formulating their strategic plans.
The national coordinator, advocacy, public relations focal officer for civil society at the Uganda Aids Commission, Joyce Namulondo Kadowe admitted that PWDs were not brought on board in the early stages of the pandemic because of misconceptions. "The HIV/Aids problem was huge and enormous in the beginning in that PWDs were invisible because it was assumed that they do not have human rights. Today they are on top of our agenda," Kadowe said.
The Kampala Declaration on Disability and HIV/Aids issued at the end of the meeting suggested among others that national Aids strategic plans recognise PWDs as vulnerable to the impact to HIV and Aids as well valuable contributors in the response to HIV/Aids at all levels inclusive of planning, implementation and monitoring.
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