We are all getting older, all of the time. How each of us experiences the aging process depends on many different factors, both personal and social.
People who are aging with HIV face multiple, intersecting challenges like income insecurity, ageism, HIV-related stigma and isolation that can exacerbate health issues. While antiretroviral therapies have made it possible for people living with HIV in Canada to live longer, their particular needs are often overlooked by both public and private economic systems.
Due to the nature of the condition, people aging with HIV are more likely to live with comorbidities and may experience periods of episodic illness that can affect their capacity to work, as well as their mental health. The resultant lack of savings, limited retirement income, and missed opportunities to access other financial benefits experienced by people aging with HIV is exacerbated by gaps in current socioeconomic programs and policies.
At the Canadian Working Group on HIV and Rehabilitation (CWGHR) , our primary focus -- informed by the community of people living with HIV -- is to work on creating the enabling environment that is needed to support people living and aging with HIV to live their best lives. Formed in 1998, CWGHR works, through cross-sector partnerships, with community-based HIV organizations, national associations of health professionals, aging-focused organizations, government agencies, private businesses and the employment sector, to improve income support, labour force participation, access to rehabilitation, quality of life, and workplace accommodation for people living with HIV, and other episodic conditions.
On January 22nd of this year, CWGHR held its 6th annual Think Tank with the theme of “Easing the Burden of Limited Financial Resources on People Aging with HIV: What can be done?”. This year’s Think Tank was held in collaboration with the Canadian Positive People Network (CPPN).
Using this Think Tank, CWGHR and CPPN facilitated a cross-disciplinary conversation about financial issues facing people aging with HIV, and potential solutions to these challenges. The event provided a safe environment in which representatives of the community of people living with HIV, government officials, and public health service providers could engage in meaningful conversation and brainstorming.
Think Tank discussions were grounded in the fact that, nowadays, the complications faced by people living with HIV result not primarily from the disease itself, but from associated financial insecurity, lack of access to comprehensive information about available services and supports, and social stigma. Socioeconomic status is one of the most important predictors of health and well-being in general and in particular for people living and aging with HIV. Income insecurity impacts a person’s ability to find and maintain a safe and healthy home, eat foods that are nutritious and balanced, pay for healthcare and rehabilitation, and participate in an active social life.
In Canada, compared to the general population, a significantly larger portion of people living with HIV survive on a low income (17.6% vs. 11.6%)1.
People who are living and aging with HIV face a range of challenges from lack of access to information about available financial supports, to lack of coordination between agencies that provide income assistance, disability and healthcare benefits.
The life stage and point in the epidemic during which a person is diagnosed greatly impacts their experience of living and aging with HIV. Some people who were diagnosed in the earlier days of the epidemic might have exhausted their savings early on based on the assumption that they would not survive into older adulthood. Those diagnosed later may expect to continue working, but may still face accommodation challenges and stigma in the workplace.
Many older adults living with HIV want to work until they are eligible for retirement income, or as long as their health permits. At work, people living with HIV often deal with disclosure issues, in the context of ongoing stigma surrounding HIV. The trauma of the diagnosis itself, and the anticipation of worsening health or capacity can be precursors to people leaving work altogether.
Long term disability (LTD) benefits offer only a portion of earnings and are not available to everyone. Confusion related to the administration of LTD or social assistance can lead people to fear losing their drug and health benefits if they return to work. Claw backs of income and obscure employment income reporting requirements can further marginalize people living with HIV, who may remain locked into social assistance even when they want to go back to work.
Work, too, can be complex. Accommodations are not always easy to attain, and based on health limitations, many people living with HIV are relegated to precarious work. Despite these circumstances, however, the pros of working generally tend to outweigh the cons. In addition to a higher income and the flexibility to save for retirement if one is able, work can provide more or even better medical and drug benefits, including rehabilitation, optical and dental coverage. For many people, work also provides an opportunity to maintain physical and mental health, as well as serving as a social outlet.
Along with accommodations at work, one of the most significant issues that people aging with HIV face is lack of access to comprehensive and cross-referenced information about various benefits and services that are available to them. Think Tank participants proposed that an entity which coordinates various benefits programs across levels of government -- a kind of “clearing house” of information and services -- would be helpful for people, especially those transitioning between benefits programs or into/out of the work force.
In general, there needs to be more communication between communities and service providers about the benefits and programs available to people living with HIV. Ideally, each community across Canada would have access to income security specialists, like Karen Tomlinson from St. Michael's Hospital in Toronto, who manages health, income and benefits for the most marginalized people in the community. A Toronto Star article on the clinic where Karen works relates, “Once the patient receives a prescription for income security from one of the 50 odd family health doctors at the clinic, they are booked an appointment with Tomlinson. She helps them file tax returns, figures out which benefits they are eligible for, and advises them on retraining programs that might help them land a more lucrative job.” (Source)
Canadians aging with HIV would benefit greatly from having access to income security specialists who can advise them through the often complex and daunting maze of information, forms, and bureaucracy they must endure as they approach retirement age or transition into/out of the work force. These crossroads can be stressful and may have a significant impact on the mental health of a person aging with HIV.
Lack of affordable or subsidized housing -- which leads to long wait lists -- is another significant issue facing aging adults in general. Income insecurity, estrangement from family, and lack of other social supports can mean people aging with HIV have a greater chance of facing housing insecurity. Housing expenses tend to represent a large portion of household spending, and high housing costs may take financial resources away from other aspects of life.
Loss of work due to stigma or episodes of reduced capacity caused by HIV-related illnesses, combined with higher than average healthcare costs can result in people aging with HIV being precariously housed. Furthermore, in order to stay in their homes, people living with HIV who have complex comorbidities, including frailty, often require a level of homecare support not currently available in the community setting. Even in cases where family support is available, for example in certain cultures where multigenerational living is the norm, homecare can become exhausting for caregivers.
While service providers like Fife House in Toronto, Sidalys in Montreal, and the Supportive Housing Program at the AIDS Committee of Newfoundland and Labrador exist to support people living with HIV who are facing homelessness or at risk of admission to long-term care, other proposed measures include co-housing, with rent or mortgage costs being shared between multiple people to reduce individual spending. Co-housing may also help to alleviate the social isolation that many people aging with HIV face.
A national housing strategy for people living and aging with HIV is long overdue and may surface other creative solutions for older adults living with HIV who want to live in the community, but require additional support to do so.
Besides secure housing, access to nutritious food on a regular basis is something many people aging with HIV cannot always afford. Unlike a housing strategy which could be implemented nationally, food security is an issue that generally needs to be resolved on a local level. Think Tank participants mentioned several barriers to food security, many of which related to emergency food provision programs themselves. For example, some food bank clients lament the quality of food provided by food banks and, while meal delivery programs are good short term resources, they often require medical documentation and can only be used for limited periods of time.
Generally, food services don’t have the capacity to provide culturally diverse foods or respond to special dietary needs. Think Tank attendees did, however, praise some food-related programs, discussing favourably the availability of community food boxes that consist of low-cost, locally produced fruits and vegetables, as well as proteins in some cases. Community gardens can provide a space -- at least in the warmer months -- for people living and aging with HIV to grow their own food, get physical exercise, be outdoors, and socialize with others from their local community. Culinary schools and volunteer programs in some Canadian regions also offer giveaways or vouchers for local restaurants and/or grocery stores which can help people living with HIV access nutritious food on an ongoing basis.
The Think Tank participants also proposed ideas to help alleviate the financial, health-related, and psychological stress people aging with HIV face.
Many people, as they get older, need special dental care, which is not covered by any provincial health plan. Yet dental problems are related to other health issues, and can get very expensive. One possible way to cope with this gap is to partner with dental schools that can provide free or low cost dental hygiene and care to people living with HIV. Community networking and peer support play a huge role as well - service providers and community groups can build networks that allow people to exchange ideas and build friendships and supportive relationships.
With a new federal government in place, policy changes are already underway: the age of eligibility for old age security (OAS) benefits has already been returned to 65 from 67, and there has been an increase of 10% in the Guaranteed Income Supplement.
Unfortunately, older adults living with HIV still remain relatively invisible in the context of government strategy in Canada. There is currently no national seniors’ or aging strategy, the national HIV strategy is outdated and needs to be revisited, and provincial chronic disease prevention and management strategies explicitly draw an artificial divide between HIV and chronic health conditions. Front-line clinicians and service providers must cobble together local responses with a lack of overarching guidance.
CWGHR is working in collaboration with other stakeholders to ensure that the needs and wishes of people aging with HIV are considered in broader policy-making as the cohort of older adults living with HIV continues to grow.
Easing the financial burden is a crucial part of promoting good health, adequate nutrition, safe, affordable housing, and the overall well-being of people aging with HIV. The multiple issues highlighted here, among others, join together to create a maelstrom of stress that can compound the effects of the disease itself. It is vital that community organizations, government (between and across jurisdictions) and private sector stakeholders all play a role in identifying and implementing practical solutions to the problems experienced at the intersection of HIV and aging.
At CWGHR, we are dedicated to creating and enhancing pathways through these complex problems to help improve the lives and livelihoods of people aging with HIV.
(1) Palmer et al. (2014) The Canadian Observational Cohort Collaboration (CANOC) .
About CWGHR: The Canadian Working Group on HIV and Rehabilitation (CWGHR) is a national charitable organization, working to improve the quality of life of people living with HIV through rehabilitation research, education, and cross‐sector partnerships. CWGHR members include people living with HIV, members of community‐based HIV organizations, national associations of health professionals, government agencies, private businesses and the employment sector.
Follow them on Twitter @HIVandRehab
About CPPN: The Think Tank was also jointly sponsored by Canadian Positive People Network. The Canadian Positive People Network (CPPN) / Reseau Canadien Des Personnes Seropositives (RCPS) is an independent network for and by people living with HIV and HIV co-infections in Canada. It exists as a people’s network to represent the needs of all persons and communities affected by HIV and HIV co-infections in Canada.
Follow CPPN on Facebook here or on twitter @CPPN-RCPS.