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Chief Executive Officer, Women Fighting AIDS in Kenya
Founding Member, International Community of Women Living With HIV
Former Chair, Pan African Women's Coalition
Former Board Member, Kenya National AIDS Council
Dorothy Onyango has no relevant financial relationships to disclose.
I was diagnosed with HIV in the early ’90s, when no treatment was available. My diagnosis was followed by months of self-recrimination and stigma inflicted by other people. However, in 1992, I attended a conference of women with HIV in Amsterdam, the International Community of Women Living with HIV/AIDS (ICW)—there were only 54 of us. We shared how we could best work together and support one another when we returned to our homes.
Because of that meeting, in 1994 I founded Women Fighting AIDS in Kenya. My life after that has been advocating for people with HIV. I have been involved in various initiatives on treatment, care, and support for people with AIDS, focusing on issues that affect women and young girls in Kenya.
Women in our society tend to be the caretakers. The burden is left to the woman to ensure that there is food on the table and you have money to do everything that is required to live. You might have grandchildren to care for—and you might even be raising them if their parents died from HIV. However, the burden is especially hard if you are older and have HIV.
Major Barriers to Treatment in Resource-Limited Countries
Far and away, the greatest barrier to treatment in resource-limited settings is the level of poverty in which most people live. People with HIV must have their medication. But first, they must have food. They must have transportation to get to the facility where the medication is dispensed. This is impossible without money or insurance.
In Kenya, there is a lack of social support for older people with HIV that is partly fueled by stigma. The assumption is that you have contracted HIV recently, engaging in activity that some believe is not becoming for an older person. There is no consideration that we may have contracted AIDS earlier in our lives. Frankly, most of us did not believe we would live to be this age, but we must deal with a lack of programs to support us.
Challenges in Care for People Aging With HIV
In Kenya, there are no specific treatment facilities for older people with HIV. One goes to the same facility as younger people who are HIV positive. This is very difficult for an older person—especially a woman—who might go to a clinic and meet with their daughter or young neighbors in the same queue.
There is also lack of treatment for noncommunicable diseases at the center where one goes for HIV treatment. At our clinic, you go to one clinic to get your antiretrovirals and perhaps antibiotic prophylaxis if your CD4+ cell count is low. But if you have other diseases (such as diabetes or hypertension), you are given a prescription or referred to a different clinic and a different doctor to treat that disease.
Finally, there is no home-based care for older people with HIV. When you are HIV positive and older, you are on your own. Once you are retired and go back to your village, you must pay for healthcare—and you need money to do that. So, there is a need for social income support for older people with HIV. This can be done through programs that include income-generating activities, such as kitchen gardens.
Social Obstructions to HIV Care for Older Women
As an older woman with HIV, I cannot talk about sexual reproductive health rights. I find younger physicians particularly reticent to discuss sexual health or sexual practices with me. Health care professionals presume that because I am older and have HIV, I should not be engaging in sex. If an older person presents with a sexually transmitted infection, it often is misdiagnosed.
Condom use is also a challenge, because condoms, including female condoms, are either not affordable or not available. It is also difficult to ask healthcare professionals at the clinic if they have condoms to give out. For men, it is a different situation. They can go to shops and buy condoms without judgment, although they may not use them at all. Women must be able to protect themselves, and lack of availability of condoms doesn’t allow for that.
To support their citizens with HIV, countries must develop policies. They need to provide a comprehensive public health response to encourage good health and wellness. Wellness centers with support groups where women with HIV can come together to advocate for ourselves would be welcome. We need to find ways for women to have a voice.
We also need policy changes to ensure the rights of older people. Of course, both of these areas—support of women and support of older people with HIV—require a budget line in the national budget.
We need to promote AIDS-friendly prevention initiatives that are focused on older people and that include facilitators who are older and have information to impart to older people and women. We also must have better implementation of diagnosis and treatment.
We must consider providing better home-based care for people with HIV. This can include community health volunteers who provide support for older people.
Finally, older people need economic support—not necessarily handouts, but ways to help support themselves. This is important to help older people with HIV become economically sound.
Do you have aging people in your practice? What programs have been implemented to support them? Leave a comment and join the conversation.