Aging with AIDS: New challenges for patients and the public at large

Last modified: 7/26/2015 9:59:10 PM
In September, Annie Ball will celebrate her 60th birthday. In 1991, she could never have imagined she’d live to see this day.

As of the end of 2013, New Hampshire was home to 1,265 people living with HIV, more than half of whom were diagnosed with AIDS, according to a state report on trends surrounding the disease. Nearly 79 percent of those diagnosed with HIV were age 40 or older, according to the report; 87 percent of those with AIDS also fell into the above-40 age range. Ball, who lives in Concord, is one of them.

This aging HIV/AIDS population is reflective of the shifting nature of the epidemic in the country as a whole: As experts and advocates have noted, a diagnosis is no longer a death sentence. Medical advancements have now allowed many like Ball to live years, even decades, longer than once thought possible.

In the early 1990s, when Ball was first diagnosed, New Hampshire was seeing dozens of deaths per year among people with HIV/AIDS. Toward the end of the decade, though, the mortality rate began falling. Between 2004 and 2013, according to the state HIV/AIDS epidemiologic profile, New Hampshire saw an average of 4.4 deaths per year among people living with AIDS – with a high of seven deaths in 2010 and a low of two in 2011.

But as the disease becomes more manageable, challenges for individuals and the broader public at large still persist. Conditions of old age, and the costs they bring, can add up. Managing treatments for these new ailments on top of the already intricate regimen required to manage AIDS can be especially precarious.

At the same time, Ball and others who work on HIV/AIDS in New Hampshire have noticed a shift in public consciousness around the disease. As the headlines about this strange, scary disease have faded, Ball worries that so, too, has an understanding of just how serious a risk it still poses.

A new reality

By the time she found herself awaiting her HIV test results in 1991, Ball had already been through this before. At that point, she was in recovery from addiction, and she had been tested for HIV while going through substance abuse treatment. That time, the results came back negative.

But then she learned that a man she was close with had hid his HIV diagnosis from her. That brought Ball back to an anonymous clinic in Springfield, Mass., for another test. In those days, it could take weeks – an eternity, it seemed – to find out the results.

At first, Ball was terrified this one would come back positive, but by the time she went back to get her results, she had talked herself down. After all, she reasoned, she managed to evade an infection despite all of those time she shared needles in the past – maybe she’d be okay this time, too.

But that hope shattered when the woman delivering the test results at the clinic took Ball’s hands and told Ball she was sorry. The test was positive.

“I felt like I didn’t breathe for five minutes,” Ball recalled. “The room was sort of fuzzy around the edges.”

The woman at the clinic offered some information on where to get treatment, but Ball – still processing the news – wasn’t ready to make any arrangements right away.

Composing herself, Ball went to meet the friend who tagged along to the appointment. At first, she didn’t reveal the news, and the friend was kind enough not to pry. Ball spent the 45-minute drive home largely in silence.

By the time they arrived home, Ball’s friend realized something wasn’t right.

“She just looked at me and said, ‘You’re positive, aren’t you?’ She just knew,” Ball remembered. “She just read something in me. And that’s when I burst into tears and really started crying. It became real for me at that point.”

Aging with AIDS

Eventually, Ball would find her way to treatment. She would – if somewhat hesitantly – join a support group where, at least at the beginning, she was the only woman. The friends she made in that group would turn out to be a blessing: “They sort of taught me how to live again,” Ball said. Today, she’s the only surviving member.

Slowly, Ball would start to shake the feeling that she was walking around with a scarlet letter on her chest. After five years, she would reveal her diagnosis to family members. About a decade ago, after her CD4 cell count plummeted, and she went through a bad bout of shingles, Ball was officially diagnosed with AIDS.

And over the course of the last 24 years, Ball would adjust and adjust and adjust her treatment over and over again. Right now, she’s on a five-drug HIV medication regimen – not including the added blood pressure, thyroid and pain medicine she must also take, nor the supplements to keep her vitamin and nutrient levels on track.

With this in mind, Ball’s newfound longevity brings mixed feelings.

“Most of the time I’m really excited that – ‘Wow, I’m going to be 60,’ ” Ball said. “And some of the times I’m like – ‘Oh, it’s all downhill now in a lot of ways.’ ”

Now, when she comes down with a cold, they tend to hold on a bit longer. Her fatigue has become even more awful and nagging than before. Her asthma, which she already had when diagnosed with HIV, has also worsened.

The recovery period after an emergency surgery several years ago left Ball weak much longer than she expected. She’s supposed to have a total knee replacement, but she’s left waiting until her health is more stable before moving forward with the procedure.

“It’s sort of been an adventure with my physician because, you know, in addition to seeing the diseases of older age, like osteoarthritis, they’re sort of seeing them magnified,” Ball explained.

Tim Lahey, an HIV and infectious disease doctor at Dartmouth-Hitchcock Medical Center, said many are indeed benefiting from longer life expectancy because of the availability of effective HIV treatments – still, he said, “it’s no walk in the park.”

“One of my patients called it ‘The Peter Pan Syndrome,’ ” 
Lahey wrote in an email. “Many of our patients were told years ago to get their affairs in order because they did not have long to live. Now they are living longer than expected and feel incredibly grateful, but they have to newly confront that they are aging in surprising ways that can be harder than aging without HIV.”

Fighting a false sense 
of security

Shortly after Ball was diagnosed, while still living in Massachusetts, she turned to service as an outlet for dealing with her diagnosis. She went through public health training programs and began speaking at local schools.

Ball’s continued to talk to students in the decades since, but along the way – in recent years, especially – she’s noticed a troubling change in perception surrounding the disease.

“I’ve heard the comment again and again from young people – well, I’ll just go on medication,” Ball said. “It’s no big deal.”

So now, she’s started bringing along her medication to show students what that really means.

“I dump them on the table and say, ‘You have to be ready, if you’re going to get treatment, to take these every single day, without fail, for the rest of your life. Without fail. Because every time you don’t take it, you’re going to lose an option, a possible option, to continue taking that medicine,’ ” Ball explained. “Just to try to tell them it’s not as simple as going on penicillin for an infection for a few days.”

This shift in perception is likely driven by several factors. For one, Lahey said, “young people who did not see the decimation the AIDS epidemic caused in the ’80’s can be complacent.” In the absence of the fear that permeated past decades, Lahey said younger generations could feel more comfortable taking risks – opting against condom use, HIV testing and other preventative measures.

Ball, for her part, also thinks this has something to do with it.

“You wouldn’t have heard those kinds of comments – I didn’t, when I was in the schools 10 years ago,” Ball said. “Kids were still taking risks, but they were afraid. And a lot of times, that fear could be a motivating factor to use to help them protect themselves. And that seems to be gone. That leverage isn’t there.”

At the same time, local HIV/AIDS service organizations in New Hampshire say they’ve been forced to scale back on their prevention and education initiatives because of dwindling resources.

Wendy Leblanc, vice president at the Southern New Hampshire HIV/AIDS Task Force, said her organization used to have “robust” HIV prevention department. Now, they’re limited to offering HIV testing with private fundraising dollars, and their focus falls largely on providing services for people who are living with HIV/AIDS.

To be sure, those services can be invaluable for the people who rely on them. Ball said the Concord-based Merrimack Valley Assistance Program has offered help picking up prescriptions and assisting with benefits reauthorization paperwork when she’s feeling too ill to complete those tasks on her own.

Still, Leblanc said, “There’s really not any education and prevention anymore because there are no resources.”

Lindsay Pierce, with the state public health division, said New Hampshire is still trying to emphasize the importance of HIV testing. Four targeted testing sites around the state provide HIV testing services, she said: the Manchester Health Department, the Community Action Program in Laconia, the Joan G. Lovering Health Center in Greenland, and Nashua Public Health and Community Services.

New challenges

Those who work at the Merrimack Valley Assistance Program and the Southern New Hampshire HIV/AIDS Task Force said the case management assistance they provide has become increasingly important.

Amanda Emery, a case manager at the Merrimack Valley Assistance Program, said many clients are who rely on their assistance are also dealing with other challenges beyond HIV/AIDS: co-occurring mental health or substance misuse issues, financial hardship, housing insecurity or instability in their personal lives. To that end, the programs offer help connecting people with treatment, finding a stable place to live, connecting with benefits programs and local food pantries, teaching skills such as budgeting and more.

Emery and Velma McClure, the program’s executive director, said they’re also seeing a rise in clients who have a history of injection drug use. While state data shows that sexual contact (between men who have sex with men, as well as between men and women) was the primary cause behind a majority of new HIV/AIDS cases reported in New Hampshire between 2004 and 2013, injection drug use was the third-leading mode of infection – identified in 10.9 percent of new AIDS cases and 6.6 percent of new HIV cases in that time period.

At nearly every level, there seems to be agreement that the rising severity of substance abuse in New Hampshire brings significant risk for more HIV cases. Lahey said New Hampshire isn’t alone in this problem, as “injection drug use has long been a major driver of new HIV infections.” Still, he said, it’s cause for concern.

“When we see rates of heroin use rise to ‘epidemic proportions’ in New Hampshire, we know new HIV infections are soon to follow,” Lahey said. “That is why it is no surprise that every year more people with HIV from injection drug use are identified in New Hampshire, and we expect there will be more in the years to come.”

Those at the state level and in the community-based organizations also say they’re seeing more need among newly resettled refugees. According to state data, most of the new HIV/AIDS cases reported in New Hampshire between 2004 and 2013 were among people born in the United States, but foreign-born individuals accounted for 19.8 percent of new HIV cases and 18.2 percent of new AIDS cases during that time.

A few years ago, the CDC changed its guidelines to no longer mandate HIV screening for refugees coming to the United States. New Hampshire public health officials still work closely with local resettlement agencies and AIDS service organizations to provide screening and support for people who are diagnosed, Pierce said.

The state also works closely with refugee resettlement agencies in Concord and Manchester to monitor HIV and AIDS among newly resettled residents.

Getting state lawmakers to pay attention to the plight of those living with HIV/AIDS in New Hampshire – let alone fund programs to for prevention or support services – remains an ongoing challenge. Historically, Lahey said, people living with HIV/AIDS have not enjoyed the benefit of a strong voice at the State House, and “amid tough budget pressures, legislators have shown that they can be tempted to cut funding for HIV prevention programming in a fashion that saves pennies now and risks lives later.”

All the while, stigma surrounding HIV/AIDS remains hard to overcome.

“The most pernicious myth in the HIV epidemic today is that people infected with HIV contracted the virus because they are somehow different – that in some way people with HIV deserved to get infected. This is hard-hearted and ill-informed, but I understand how the finger-pointing can be a defense mechanism against fear,” Lahey said. “The truth is, we are all vulnerable to this wily virus, and the only way we will win against HIV is to band together in compassion.”

Ball, for her part, says this is part of the reason why she continues to volunteer to share her own story. Her life may be difficult, and the risks inherent with her diagnosis may indeed be serious, but she hopes the broader public understands that people with HIV/AIDS don’t need to be marginalized – and that others living with the disease understand they’re not alone.

“My journey has gotten me to be comfortable and realize it’s part of me, it’s who I am,” Ball said. “Maybe somebody else will read this and see that, you know, here’s somebody who’s saying where they live, and saying who they are, and sharing everything about themselves – it might be just enough to get them to take the next step and feel more comfortable.”

(Casey McDermott can be reached at 369-3306 or or on Twitter @caseymcdermott.)

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