According to the BC-CfE Drug Treatment Program data, over half of HIV positive individuals in British Columbia, who are on antiretroviral therapy (ART), are over 50 years of age. Each year in BC, a small number of people over the age of 60 are newly diagnosed with HIV, according to the BC Centre for Disease Control. These two groups of older people face different challenges and health care needs, and both groups challenge common cultural perceptions about ageing, vitality, quality of life and sexuality.
Glen Bradford is Manager of the Peer Navigation and Prison Outreach at Positive Living Society of B.C. He also co-leads a weekly support group at St. Paul’s Hospital for long-term survivors of HIV, who are mostly over 50 years of age. The BC-CfE spoke with him about the challenges faced by older individuals living with HIV, their strengths and what health care providers can do to support them.
BC-CfE: What do you see as the biggest concerns for individuals who were diagnosed with HIV in the 1980s and 1990s and who are now reaching their senior years?
Glen Bradford: Now, more than half of all HIV people in Canada and the United States are over the age of 50. Many have lived with HIV over 20 years, some over 30 years. This is a new phenomenon in the HIV community, as no one has lived this long before.
People who have lived for decades with HIV have experienced a great number of deaths within their friendship network early on. Over time, they may have lost careers and their incomes may have been drastically reduced. These factors contributed to ongoing social isolation.
Ageing with HIV, in combination with long-term antiretroviral therapy use and in some cases poor treatment adherence, has brought on new problems such as heart and lung disease, non-AIDS related cancers, osteoporosis , facial and body wasting, neuro-cognitive impairment and other challenges. These co-morbidities are not only difficult to manage, but they are emotionally triggering. They remind people of what it was like back in the beginning when people were getting sick from what was then called AIDS.
As well, there is limited clinical knowledge in regards to pre-mature ageing related co-morbidities with HIV. Clinicians, specialists, researchers and pharmacists are working together to address these new issues. For this particular cohort, it can feel like we are the guinea pigs of HIV-again.
BC-CfE: What strengths and resilience do these individuals have?
GB: For people living with HIV for a long time, their greatest strength is their ability to reinvent themselves after overcoming adversities. Having purpose in one’s life is important. Many HIV-positive people find new purpose in helping others with HIV. Volunteering is a huge part of our community. We know we would not have made it this far without helping each other.
By being in treatment with HIV specialists, pharmacists, co-morbidity specialists and by going through sometimes life-threatening surgeries, people living with HIV developed excellent health care navigation skills. In order to deal with overwhelming social and institutional stigma related to HIV, addiction and sexual orientation we also needed to develop individual and collective advocacy skills.
BC-CfE: What do you see as the biggest concerns for older individuals who are diagnosed with HIV later in their lives?
GB: With access to sexual enhancement drugs and a shift in what it means to be LGBT (lesbian, gay, bisexual, trans) today, we are seeing an increase in older people exploring their gender and sexuality. It also means that some of these people are getting HIV later in their lives. Some older people newly diagnosed with HIV experience shame and guilt. They may think: “After all these years, I should have known better.”
BC-CfE: What kinds of care and support services does this group need?
GB: Loneliness is a challenge for many older people, no matter when they contracted HIV. Some older people newly diagnosed with HIV report feeling like they don’t fit in current support groups. People newly diagnosed with HIV tend to be in their 20s, 30s and 40s. People who are older and newly diagnosed with HIV don’t have the same life experiences of those who have lived with HIV for a long time. There are not enough people in this unique situation to sustain a support group just for them. Despite these obstacles, they should feel that they could attend any group for information and support. No one is a perfect fit for a support group. It is the diversity within groups that can make them powerful for everyone. Helping older people newly diagnosed with HIV find each other, through buddy or networking programs, can be helpful.
BC-CfE: What suggestions do you have for health care professionals working with older individuals living with HIV?
GB: Be aware of patient’s post-traumatic stress from living with HIV, through watching the damage this disease has caused over decades to the patient and to others. We are seeing a lot of depression in the ageing with HIV community.
Physicians will have to become more aware of the ageing co-morbidities associated with HIV in order to help older people with HIV navigate health care systems that are new to them. Self-managing multiple prescription drug treatments (polypharmacy) can be challenging for both the patient and the physician.
Long-term, supportive care facilities will have to be culturally sensitive to the needs of ageing people with HIV who are LGBT. Fear of going back into the closet comes up a lot in support groups and counselling sessions. Health care workers should be aware of this fear when working with older people with HIV.