Elvis Basudde (left) has lived with HIV for more than 23 years, while Maj Rubaramira Ruranga was diagnosed with the disease more than 35 years ago. PHOTO | FILE | NMG
For many people ageing with HIV, it is easy to feel anxious or pessimistic, often fearing that they will not live to see their 70s or beyond. However, there is no need to worry. With the right care, people living with HIV can still enjoy a long, healthy, and productive life. HIV, if left untreated, can progress to a condition called Acquired Immunodeficiency Syndrome (AIDS). While the human body cannot rid itself of HIV, and there is no known cure, modern medicine offers effective treatment options. antiretroviral therapy (ART) has transformed the outlook for people with HIV, helping them live longer and healthier lives. According to UNAIDS, individuals who begin ART at age 50 can expect to live an additional 27 years. Research in South Africa has shown that as more people live with HIV, the prevalence of the virus among older age groups is expected to rise.
This means that many people living with HIV can expect to reach the age of 60 and beyond, living their later years on ART. While ART does not cure HIV, it enables individuals to live with the virus for as long as they would have without it. In fact, with ART, people living with HIV can lead fulfilling, extended lives, potentially reaching 70 years or older. To maximise the benefits of ART and delay the onset of Aids, it is essential to adopt a healthy lifestyle. Long-term survivors, such as veteran HIV activist Maj Rubaramira Ruranga, have demonstrated that with the right care and habits, it is possible to stay fit and healthy for decades, even 30 to 40 years or more, after diagnosis.
Positive living
Adopting a lifestyle that prevents the transmission of HIV to others and reduces the risk of re-infection is essential. This lifestyle, known as positive living or living positively with HIV, emphasises maintaining a positive attitude, living healthily, and learning how to cope with your new status. It is about living well despite the diagnosis, to lead a fulfilling and productive life. Positive living is not only about taking steps that enhance one's health but also about sustaining the ability to contribute meaningfully to family and community well-being. This approach helps reduce the stigma and social exclusion that can increase the vulnerability of surviving family members to HIV. It also highlights the importance of investing in education, healthcare, social support, and community development, which strengthen their capacity to tackle the HIV epidemic. According to the Centres for Disease Control and Prevention (CDC), nearly half of people living with HIV/Aids in the United States are aged between 60 and older. Many of them have been living with the virus for years, while others are newly diagnosed. In 2022, an estimated 48 percent of people with diagnosed HIV in the US were aged between 60 and older.
This has led the US government to observe National HIV/Aids and Aging Awareness Day every September 18. The day focuses on raising awareness about the growing number of people living long and full lives with HIV/Aids and addressing the aging-related challenges of prevention, testing, treatment, and care. Globally, five million people aged 60 and older were living with HIV/Aids in 2021. In Uganda, the Uganda Population-Based HIV Impact Assessment (UPHIA 2021–2022) reports an HIV prevalence of 6.2 percent among adults aged between 15 and 65, with a higher rate among women (7.6 percent) compared to men (4.7 percent). The prevalence is also higher in urban areas (9.8 percent) than in rural areas (6.7 percent). This corresponds to approximately 1.3 million people living with HIV/Aids in Uganda. When the epidemic began more than 40 years ago, a diagnosis of HIV/Aids was essentially a death sentence, with life expectancy after diagnosis being just 1 to 2 years. At that time, the issues of ageing with HIV/Aids were not a significant concern. Today, however, many people living with HIV/Aids are enjoying long and healthy lives.
Dr Stephen Watiti
When Dr Watiti turned 70 on May 13, 2023, he reflected on having lived two distinct lives; one before HIV, up to nearly 35 years old, and another after his diagnosis, living with HIV and eventually Aids, along with other related illnesses. He credits his long life with HIV to the grace of God. He recalled his battle with Cryptococcal meningitis in 1999, the second leading cause of death after tuberculosis among people living with HIV/Aids. He also faced numerous Aids-related illnesses and a terrifying near-death experience, with his CD4 count plummeting due to cancer, while simultaneously battling tuberculosis and Kaposi’s sarcoma. He underwent a dreaded lumbar puncture (spinal tap), a diagnostic test performed in the lower back, which he described as a grim moment. Though all this happened more than 20 years ago, he is now in good health, free of challenges related to HIV or the effects of the spinal tap. He attributes his well-being and graceful aging to his deep passion for medical literacy, having become a doctor. "Medically speaking, it is truly a miracle that I am here today. Medicine works if you adhere to it," he says. He emphasises the importance of strictly following a treatment regimen, particularly anti-retroviral drugs (ARVs). While ARVs are not a cure, they significantly improve the quality of life.
He stresses that ARVs are a lifetime commitment. Even when the viral load becomes undetectable, it is crucial to continue treatment to prevent resistance and to maintain good health. He also speaks about his personal life, mentioning that after losing his wife to Aids in 1994, he found a partner who has been a close friend for 19 years. "HIV-positive people often feel lost after losing a spouse," he says. "I was in my mid-40s and realised that if I did not find a partner, I would be in trouble. She cares for me deeply, even when we do not always agree, and we treasure each other. This has been a great support to me." Dr Watiti also highlights that while effective treatment has greatly improved the lives of those living with HIV, growing older with the virus can increase the likelihood of experiencing age-related health issues earlier than expected. Even with consistent treatment, the inevitable effects of ageing, such as gradual hearing loss, impaired vision, and receding gums, cannot be avoided.
Maj Rubaramira Ruranga at 77
Rubaramira is ageing gracefully with HIV. Diagnosed at 35, he was one of the first Ugandans to participate in HIV trials and to be initiated on antiretroviral drugs (ARVs) more than 35 years ago. Remarkably, Rubaramira and his wife are a discordant couple; he is HIV-positive, while his wife is HIV-negative. Together, they have five children, all of whom are free from the virus. Rubaramira attributes his long life to his commitment to learning how to live healthily with HIV. Through extensive reading, he discovered the importance of lifestyle choices in maintaining health and longevity, particularly in how to eat, behave, and avoid harmful habits. He educated himself about the dos and don’ts of ageing with HIV. Looking back, Rubaramira admits he used to lead a destructive lifestyle. He was a heavy drinker, consuming up to 25 bottles of beer a day, along with two bottles of whiskey and four packs of cigarettes daily. He also had a reputation as a womaniser.
However, through his self-education, Rubaramira realised that the key to living longer and healthier was making significant lifestyle changes, particularly by giving up alcohol, smoking, and his womanising ways. “I realised that to live long with HIV, I had to stop these habits,” he says. “It was the only way to reduce risks and ensure my treatment worked.” He explains that alcohol was especially detrimental to his health. It impaired his judgment and self-control and interfered with how his body processed ARVs, reducing their effectiveness and increasing the risk of drug resistance. Additionally, alcohol placed a strain on his liver, which is crucial in processing HIV medications. Rubaramira also recognises that excessive drinking increases the risk of liver diseases such as cirrhosis and hepatitis and impaired memory, making it easy to forget to take medication, leading to treatment failure. Most importantly, he learnt that drinking compromised his decision-making, which could lead to risky behaviours such as unprotected sex. This not only increased his chances of contracting another strain of HIV but also raised the risk of transmitting the disease to others and contracting other infections. After acknowledging these risks, Rubaramira made the conscious decision to abandon these harmful habits. He began to see himself as an example to others living with HIV/Aids, someone who could inspire change and show that living a healthy life was possible. His transformation has since become an inspiration to many, with others adopting his lifestyle and living healthier lives as a result.
Milly Katana
Katana has been living with HIV for more than 35 years, yet she proudly shares that she has never faced life-threatening illnesses. Thanks to her commitment to positive living, she remains free from complications and health issues. For Katana, the key to living well with HIV lies in acceptance. “How you got the virus is irrelevant. What matters is your present, your future, and how you manage your treatment. Stop dwelling on the past because it cannot be changed,” she advises. She believes that accepting her new status as part of who she is was crucial. “I worked through my emotions, avoided denial, and embraced my status. That is where positive living starts,” Katana explains. Katana emphasises the importance of a balanced diet, particularly for those on ARVs. She explains that consuming a variety of body-building, body-repairing, and energy-giving foods helps to boost the body's ability to fight diseases. According to Katana, the quality of your diet can significantly impact the effectiveness of ARVs, reducing side effects and improving overall health. Taking time to rest is also vital. Katana makes it a priority to rest, especially after lunch. She encourages others to do the same, noting that rest contributes to better health and overall well-being.
Richard Serunkuuma
Richard Serunkuuma, the executive director, Positive Men’s Union, says he enjoys an active lifestyle and exercises regularly, though he does not necessarily go to the gym. He makes a conscious effort to avoid stress and other conditions that could weaken his immune system. Additionally, he values maintaining a strong social network. “I have a very supportive social network that provides moral, spiritual, and financial assistance. Going public about my HIV status has been beneficial, as it has allowed me to build social capital. I have friends in China and America who offer me spiritual support. While it is common for one’s circle of friends to shrink as they grow older, mine has been expanding, and for that, I am truly grateful,” he says.
Canon Gideon Byamugisha
Canon Byamugisha advises those with HIV/Aids to always hold on to hope, keep their faith in God, and engage in prayer. Seek pastoral counselling and support from loved ones. With love, guidance, and counselling, you can overcome even the toughest times, especially when dealing with social challenges such as stigma. Do not take any medication without first consulting your doctor, including herbal remedies. Some drugs may interact with your ARVs, and it is crucial to ensure that everything you take is safe. It is essential to practice safe sex to prevent re-infections. Even when on ARVs, there is still a risk of transmitting the virus to others. Make sure your partner gets tested, and if you choose to have sex, always use a condom or abstain to reduce risks. Always seek medical care promptly when you are ill. Never self-medicate, and be sure to follow the prescribed treatment plan. Take all necessary tests, such as liver and kidney function tests, as recommended by your healthcare provider. Canon Byamugisha emphasises the importance of regularly consulting healthcare professionals to monitor your blood and urine for any potential issues. If you experience new symptoms, side effects from treatment, or any concerns, always inform your healthcare provider so they can assess the situation and provide appropriate care.
Challenges
Despite living positively with HIV, growing older with the virus presents significant challenges. The Medical Research Council/Uganda Virus Research Institute (MRC/UVRI), a research unit on HIV in Entebbe, published a study in May 2022 that focused on elderly individuals in Uganda living with HIV/Aids. The findings highlight a range of issues, including multiple concurrent diseases, inadequate healthcare, isolation, neglect, and lack of support. Additionally, some individuals experience side effects from long-term treatment. For people living with HIV who have been on ARV treatment since the early 1990s, the long-term effects on the aging body are unavoidable. Certain ARVs, for example, put additional strain on the kidneys, potentially leading to kidney failure. Other health conditions that are more prevalent among older people living with HIV/Aids include comorbidities such as bone disease, heart disease, abnormal lipids, kidney disease, brain and neurological disorders, diabetes, cancers, frailty, Kaposi sarcoma, Herpes simplex, pneumonia, and liver failure. The MRC/UVRI report also mentions common diseases that affect people living with HIV/Aids, such as tuberculosis (TB), arthritis, stroke, hypertension, osteoporosis (weakened bones), chronic lung disease, asthma, angina, depression, cataracts, and memory problems.
HIV is a devastating virus that attacks the brain shortly after transmission, and even successful viral suppression cannot eliminate it. As individuals age with HIV, the immune system weakens further, and brain disorders can worsen. Growing older with HIV increases the likelihood of experiencing normal age-related illnesses earlier, such as hearing loss, impaired vision, and receding gums. Despite the support of effective treatment, these effects of aging are inevitable. Lillian Nabawanda, a counsellor at the Infectious Disease Institute (IDI-Mulago), notes that older individuals living with HIV/Aids, especially those newly diagnosed, may feel stigmatised due to both their age and HIV status. This stigma often leads to isolation and loneliness. Nabawanda emphasises the importance of maintaining mental health as one ages, as it significantly impacts overall well-being. She advises that if someone is feeling low, talking to family, friends, or a healthcare professional can be helpful.
Seeking support early is crucial to avoid stress, which can exacerbate age-related cognitive and physical health issues. Dr Fred Muwanga from Njeru Health Centre advises older women living with HIV to be mindful of perimenopause, the time leading up to the last menstrual period. Women aged 45 to 56 will experience this phase, which can include hot flashes, night sweats, difficulty sleeping, low libido, vaginal dryness, pain during sex, memory problems, mood swings, anxiety, and depression or women living with HIV, distinguishing between menopausal symptoms and HIV-related symptoms can be challenging, so consulting with a healthcare professional is important to receive appropriate care.
