Growing Old with HIV

IT’S BEEN 30 years since the human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS) epidemic first made headlines. In the ensuing years, medical breakthroughs and strides in HIV treatment and management have resulted in diagnosed individuals living longer and relatively healthy lives. As a result, the HIV-positive population that just decades ago was not expected to survive is aging into senior citizen status at an alarming rate, creating unique challenges for healthcare providers and public health officials. Actually, not all individuals over age 55 who are living with HIV contracted the disease when they were younger; many new cases are occurring in an aging population that remains sexually active and HIV-ignorant. According to data presented at the 125th Annual Convention of the American Psychological Association, older adults make up almost half of all people living with HIV. And these numbers are on the rise.¹

Information presented at the 2016 White House AIDS and Aging Meeting stressed that misperceptions about risk have contributed to the uptick in HIV diagnoses: “Older age is not a safety net that protects people from getting HIV. Many issues surrounding older adults will only increase as our country faces the continuing graying of our nation’s HIV epidemic.”²

Perceptions and Lifestyle Increase Risk Factors

Longer lifespans, rising divorce rates and lack of education are all factors in the rising HIV rates among seniors. A recent Medscape article noted that older adults who are sexually active may be at higher risk of contracting the virus, in part because as a population they are overlooked when it comes to HIV education and prevention: “The lack of information about HIV risk directed to older adults is compounded by the fact that HIV risk exists in a context of secrecy, especially later in life.”³ In addition, certain behaviors, such as older men intentionally hiding sexual orientation, extramarital sex, sex with commercial sex workers and substance abuse involving needles, create a perfect storm of vulnerability and denial.

Infection risk may also be increased by an aging and potentially compromised immune system or other age-related health conditions. “HIV is still perceived as a young person’s disease, so healthcare providers may not regularly address sexual health and risk behaviors with their older patients,” says Mark Brennan-Ing, PhD, director for research and evaluation at the AIDS Community Research Initiative.¹

Another influencing factor includes more effective HIV drug therapies that have allowed many who contracted the virus decades ago to survive well into their senior years. Many of these adults are managing their HIV status successfully, although they may face other health challenges related to the long-term effects of the virus and/or side effects of their medications. “The challenges of caring for the patient with HIV who is aging are similar to those of caring for other aging patients,” says Dr. Brennan-Ing. “The difference is that older adults with HIV may be confronting [age-related health] issues decades earlier than their non-infected peers; older adults with HIV are much more likely to die from chronic conditions associated with aging than an AIDS-related condition.”¹

Social trends such as rising divorce statistics that put older individuals back in the dating scene also contribute to HIV infection rates. In addition, the widespread availability of drugs like Viagra means seniors are much more likely to be sexually active with multiple partners, not realizing that advanced age can make them even more vulnerable to infection. Some of the age-related risks include: • An aging immune system is less resistant to infection.

• Underlying health conditions common in older individuals can create increased vulnerability to communicable disease.
• Thinner skin as a result of aging may make it easier for the virus to enter the bloodstream.

When it comes to minimizing risk factors for HIV, knowledge is clearly power. For older adults, ignorance about risk can make them less likely to ask potential partners about HIV status, less likely to be tested themselves and reticent to broach the subject of sexual activity with their healthcare providers.

Aging Populations ExperienceDualDiagnosis Thanks to advances in research and treatment, an HIV diagnosis today does not automatically mean an AIDS diagnosis is soon to follow. However, the older one is at the time of diagnosis, the higher the probability of a dual diagnosis of HIV and AIDS, with the larger proportion of those dual diagnoses due to late-stage testing. According to the Centers for Disease Control and Prevention, as of 2014, 40 percent of those aged 55 and older already had late-stage AIDS infections at the time of their HIV diagnosis. 4 Sadly, an older person could live for years with HIV without seeking medical attention, attributing the symptoms to other age-related conditions:

• Fatigue and weight loss associated with AIDS could be interpreted as normal aging symptoms.
• AIDS-related pneumonia is sometimes mistaken for congestive heart failure in older patients.
• HIV-related dementia can be mistaken for Alzheimer’s or Parkinson’s disease.

In addition, some conditions, including heart disease, cancer, dementia and kidney disease, may develop earlier in patients with HIV, and HIV-positive status can also worsen conditions common to seniors, including diabetes, osteoporosis, arthritis and high blood pressure.⁴

Counting the Health and Financial Costs

Anyone living with HIV, regardless of age, faces extremely high medical costs, with the lifetime cost of care often totaling hundreds of thousands of dollars. Medicare serves as a significant source of health coverage for people living with HIV. According to a 2016 report published in the Henry J. Kaiser Family Foundation titled “Medicare and HIV,” 2016 Medicare spending on HIV totaled $10 billion and represented 51 percent of federal spending on HIV care. 5 The cost of medications makes up a bulk of that figure. The addition of the Part D prescription drug benefit for Medicare resulted in spending on HIV surpassing federal Medicaid spending.

Medicare spending for HIV has increased over the years and, in fact, the program now serves as the single largest source of federal financing for HIV care and treatment. 5 HIV patients under age 65 often qualify for Medicare because of their disability status, while a growing share of the HIV population is over age 65 and already aged into the program. Other sources of financial support for patients include Medicaid and state or community assistance programs, AIDS Drug Assistance Programs (ADAP) and other low-income subsidies.⁵

Evaluating the Emotional Toll

The mental health landscape for older adults living with HIV is complex, with the population five times more likely to experience depression than those of a similar age who do not have the virus. One study found 27 percent of HIV-infected older adults had considered suicide, while a 2010 study found 39 percent of HIV-infected older adults exhibited symptoms of major depressive disorder.⁶

Compared to their younger counterparts, HIV-positive older adults have a lower survival rate following an AIDS diagnosis and fewer social supports to help navigate the daunting task of disease care and management. Not surprisingly, all people living with HIV are at increased risk of developing mood, cognitive or anxiety disorders, and depression’s ramifications can extend beyond emotional health, often leading to decreased levels of medication compliance. In a U.S. News and World Report article citing the psychological effects of HIV, Sheryl Catz, PhD, a clinical psychologist and professor who researches HIV, health behavior and chronic disease management, states, “We did find across the board that people who were depressed had a more difficult time with their [medication] adherence.”⁷

Social isolation and post-diagnosis rejection by family and even partners can compound the overwhelming feelings of loss associated with a positive HIV diagnosis. While there is no one-size-fits-all coping strategy, finding a support group or at least one trusted individual who can serve as a confidant can help alleviate some of the stigma and shame associated with HIV. “I’m a big believer [that], psychologically, it is important people not be entirely isolated with their HIV diagnosis and they are not living entirely alone with it,” said Robert Remien, PhD, a professor of clinical psychology and director of the HIV Center for Clinical and Behavioral Studies at Columbia University. “We never recommend people disclose or not disclose,” adds Dr. Catz. “But we do see a tremendous burden lifted off people when they have a network of [supporters] who are aware of their status.”⁷

Finding a supportive community or seeking out the assistance of a psychologist or social worker can also be beneficial, especially when people are newly diagnosed and processing the short- and long-term ramifications of the diagnosis.

Identifying Improved Care Strategies

In June 2017, a new health app aimed at the aging lesbian, gay, bisexual and transgender population debuted as a service to help the HIV-positive population manage their healthcare. Developed by Sage, a British software company, the Health Storylines digital app reminds users to take their medications, helps monitor daily symptoms and allows them to share symptoms and medication information with healthcare providers. “It’s incredibly user-friendly and can enhance conversations between app users, their healthcare providers and care managers,” says Diosdado Gica, Sage’s chief program officer.⁸

In addition to healthcare monitoring tools, better training for healthcare providers can play a critical role in helping an aging population deal with HIV. In an article published in The Rainbow Times, Sean Cahill, PhD, director of curriculum and policy at the National Center for Innovation HIV Care, outlines several strategies HIV and AIDS service providers can implement, including improved training regarding cultural and social sensitivities for older adults with HIV; increased screening for comorbidities, including mental health issues; addressing substance abuse issues; candid conversations about sexual activity; and proactively discussing HIV prevention and testing. “Topics such as dating and being sexually active while living with HIV, medication adherence, dealing with stigma (from family, friends, coworkers and healthcare professionals) and navigating insurance issues can provide clients with more information on pertinent issues and create a space where individuals can connect with those who are facing similar difficulties,” says Dr. Cahill.⁹

Medication Breakthroughs and the Need for a Global Response

Three decades ago, no one could have imagined that HIV would one day be categorized as a geriatric disease. Yet by 2030, it is estimated more than 70 percent of people with HIV will be over age 50. 10 While the numbers are daunting, new medications in the pipeline may make treating this population easier. Current research is focused on a long-term injectable, which might be preferable for older patients who struggle to manage complicated medication regimens. And, a new two-drug HIV treatment currently under U.S. Food and Drug Administration review for potential 2018 release could offer a more streamlined approach to care, replacing the multiple medication treatment plans that are common today.

While research has made tremendous strides in addressing the spread of HIV/AIDS, for healthcare providers and public health officials, the task at hand is centered on educating individuals who have been largely ignored by outreach efforts. Confronting the lingering stigmas associated with HIV and ageism, targeting funding efforts toward the needs of this population, and taking a more proactive approach to HIV testing and prevention programs can help a generation of current and future patients lead longer, healthier and more productive lives. “With the demographic shift toward older adults in the HIV population globally, and the elusiveness of a cure, addressing the care needs of this aging population is paramount,” says Dr. Brennan-Ing. “The aging of the HIV epidemic will be very challenging, but provides the opportunity to mount a global response that will address the needs of this population across regions and settings.”¹¹