Are skilled nursing providers ready to care?

McKnight's Long-Term Care News

At the height of the AIDS epidemic in the US, people diagnosed with the disease might have expected to live 18 months — if their case was identified early.

If they entered a nursing home, it was often for care that looked like a more clinically complex form of hospice: They went there to die.

Today, a patient living with HIV that is well managed by the latest generation of medications can live a full life, nearly as long as the average American. Shrinking long-term care demand has forced the closure of some skilled nursing facilities known for their HIV programs in recent years. And some other nursing homes haven’t seen more than the occasional patient with HIV.

But all of that is getting ready to change, with more than 53% of Americans living with HIV being over the age of 50 in 2022, according to Centers for Disease Control and Prevention data. By 2030, the share is estimated to climb to 70%.

“This has been, traditionally, a disease of younger adults, and that population is now aging,” said David Nace, chief of geriatric medicine at the University of Pittsburgh Medical Center. “That shift is continuing as the population ages, as we are much more effective in preventing new cases. The needs for long-term care are going up.”

He predicts patients with HIV will be admitted to almost all long-term care facilities across the US, with time; About 1.2 millions currently have HIV, though the government estimates about 13% don’t know it. Just under 40,000 are newly diagnosed each year.

New drug regimens have sent survival rates soaring, but now there are new caregiving implications to consider.

“We see that our population of HIV patients are getting older and have more complicated diseases. It’s not just the single diagnosis of HIV,” said Rodolfo Munera, MD, an infectious disease overseeing clinical care at New Jersey’s Broadway House for Continuing Care. “It becomes an issue when you have problems with the lungs, with the kidneys, with the liver and the HIV medications. You have to be well-trained, have knowledge about what the medications are and what you have to do for those patients.”

Less death, more demand

It’s difficult to ascertain how many patients with HIV have accessed nursing homes in recent years. The Centers for Medicare & Medicaid Services did not respond to McKnight’s Long-Term Care News’ request for diagnosis-related data.

The last major study included Medicare beneficiaries only from 2011-2013, representing about 7,200 stays. But previous research found that the number of stays had doubled between 2001 and 2010 in states where HIV prevalence was highest, meaning today’s overall nursing home use could be much higher if those trends have continued.

The largest group of people living with HIV is 55-64 years old, which raises important questions: Will nursing homes be ready — and willing — to admit them when other health needs push them into care?

Can they adequately address often-accompanying substance use disorder and mental health needs, especially among older HIV patients who still live with the trauma of the epidemic’s earlier days? The 1980s, especially, were marked by misunderstanding of HIV and AIDS, with those diagnosed publicly blamed for their illness and pushed to the edges of society.

Will reimbursement keep up with treatment advances and ensure that nursing homes can afford to treat patients on costly medications? Paying for lifelong care has been estimated to run between $400,000 and $1 million per person. It’s not inexpensive for providers, either.

After decades in the trenches, HIV and aging policy expert Terri Wilder said there’s still a critical need to promote access and equitable care. That includes a push for states to adopt an LTC Bill of Rights that makes it illegal for facilities to deny admission or refuse care or reasonable accommodations. States that have passed such legislation also typically include required staff education on HIV disease terminology, best practices and more.

“We are going to see an uptick, for sure, of people living with HIV needing this care,” said Wilder, manager of health and economic security policy at SAGE, an advocacy organization for LGBTQ seniors.

“It’s really important for people to be thinking about it in terms of whether their staff are trained, if they’re ready to care for folks,” she added. “Do they understand universal precautions? Really, do you understand how to treat people with respect and dignity? There’s a lot of HIV-related stigma that still exists.”

An evolution in HIV care

While some nursing homes may still buy into old perceptions about HIV transmission risk, others misunderstand the simplified care requirements for HIV in the modern era, experts told McKnight’s.

Still others shy away from tackling HIV care, fearing they won’t be paid enough to cover the costs.

“There’s an issue around access to necessary services and long-term care because of the cost of the medications [and ]concern about managing patients who are on these complex medications,” Nace acknowledged.

Janelle Hartman, LCSW, associate director of mental health services for Coler Rehabilitation and Nursing Care Center in Manhattan, has been tackling those issues for 34 years. She joined the facility as it was adding a highly staffed AIDS expansion unit, where nursing and social work staff typically lost a patient each week to the disease. She called it the “hardest, and best, job.”

“I definitely became very familiar with death,” said Hartman, describing sitting with dying patients and taking their families to the morgue to say their goodbyes. “The palliative care part of it really talked to me. We knew there wasn’t at that time a chance for living very long for many. Those who kept surviving, we got them discharged and we sent them off with a prayer and said, ‘Please live as many days as you can out there.’”

Today, Coler is home to 12 long-stay residents with HIV, but Hartman expects to welcome more given the aging demographic.

Medical needs

In most cases, it’s concurrent conditions that land a person with HIV in a nursing home today.

“They may have had a past AIDS diagnosis. They may have had opportunistic infections. But those are not the things that are impacting their health. They’re using their antiretrovirals appropriately,” explained Brianne Olivieri-Mui, PhD, an assistant professor at Northeastern University who studies Medicare beneficiaries with HIV.

“They are coming into the nursing home because they broke a hip or they have cardiovascular disease,” she added. “We’re seeing them more for age-related conditions, but they’re around 60 to 70 years old.”

Common comorbidities include kidney disease, increased fracture risk, increased rates of diabetes and hypertension, according to Sarah McBeth, an HIV primary care provider in Pennsylvania. But people with HIV also often have current or past social factors — smoking, alcohol use, intravenous drug use — that put them at higher risk for conditions that could require a nursing home stay.

None of that should discourage skilled nursing providers from accepting such patients, if they would treat the same conditions in others, medical experts told McKnight’s.

“The general population still seems to view that someone with HIV is going to look a certain way, act a certain way — that they’re infectious just to be around them in the same room, and that’s so wrong,” said Judi Lacinak, RN, nurse practitioner and nurse educator at New Jersey’s Broadway House. “HIV now is a chronic illness, and that’s how we treat it.”

HIV is primarily transmitted through sexual contact or sharing needles or syringes; despite the old image of emaciated patients confined to isolation units, it’s not easily passed to others.

Lapses in antiretrovirals

Aside from comorbid conditions, the key challenge for many HIV patients in nursing homes is continued access to their antiretroviral medications.

Providing those can challenge nursing homes, particularly during a short stay.

Just over a quarter of Americans with HIV qualified for Medicare by 2020. Meanwhile, Medicaid covers about 45% of all HIV-related care in the US.

All federal insurers must cover antiretrovirals as a protected drug class. But research has shown patients are most likely to have trouble accessing ARVs during a nursing home stay, said Olivieri-Mui.

Nursing homes must pay the cost of medications out of their consolidated payment during a short stay, and the latest combo medications “are quite expensive,” Olivieri-Mui acknowledged. Getting the correct drugs in house quickly also can be tough for nursing homes without a steady stream of HIV cases.

Olivieri-Mui said she’s encountered multiple nursing homes that have asked patients with HIV to bring their drugs from home during a short stay “because it’s easier than them going and getting it.”

“That’s problematic in and of itself,” she said. “A lot of people with HIV don’t have somebody at home who can bring their medications. … Their family members may not even know they have HIV.”

There’s also a formulary issue. Medicare Part D plans can favor lower-priced drugs. Those might include older medications in separate pills that have been shown to reduce adherence and may even result in complications for some patients.

The good news is that, once the correct medications are in hand, nursing home patients with HIV need little extra care compared to other residents with common comorbidities.

There was a time when Medicare boosted providers’ per-diem payment rate by 128% to care for an HIV patient. The 2019 Patient Driven Payment Model acknowledges ongoing concerns about cost of care, but brought the add-on in line with modern, more limited HIV treatment needs, a former CMS official told McKnight’s. Today, providers can get an 8-point non-therapy ancillary payment adjustment (the highest for any condition) and an 18% nursing adjustment to reflect additional nurse staffing time that can be required.

But even with add-ons, case-mix payments may max out for patients with the most or most complex comorbidities. And Medicare Advantage plans aren’t required to provide add-ons at all.

Shoring up care outside the big cities

Experts said concerns about costs and being hung up on an outdated perception of HIV needs still lead providers to divert patients to other facilities — even if the closest one specializing in HIV care is in a distant urban area or another state.

Even residents of states where HIV diagnoses are more common aren’t necessarily guaranteed access when it comes to long-term care, Wilder said. She recounted a situation in Albany, NY, about two years ago in which a local nursing home told an HIV organization its client should look for care three hours away in New York City.

“Telling somebody to go to New York City, they’re really going to be isolated and alone because they’re not going to have their community around them,” Wilder said. “We’re concerned that as people with HIV get older, they’re going to be more likely to need this skilled nursing care. Is the nursing home industry ready?”

Munera calls the idea of denying HIV care in a certified skilled nursing facility today “outrageous.”

Though he acknowledges not all providers do it well yet — he’s seen patients transferred from other nursing homes with the wrong medications or wrong doses — he insists good care is within providers’ reach.

“Any institution should be taking HIV patients, and they should have staff that can care for any patient,” he said.

Moving past barriers

Training and access to specialists can make critical differences, Munera told a McKnight’s editor who visited the program this summer.

Broadway House has 78 beds, some of which are for sub-acute patients without HIV. It has an advanced nurse practitioner, rounding physician or infectious disease doctor on site almost daily.

“It’s an advantage, and it’s unusual for most long-term care facilities,” Munera said. “You have to be well-trained and knowledgeable about the medications and what you have to do for those patients.”

Changes in condition or new medications for comorbidities could require adjustments to antiretrovirals. Nace notes that for facilities without in-house infectious disease experts, long-term care pharmacists and specialists from partner health systems can provide needed guidance.

And connecting with the physician coordinating the patient’s care before admission also provides “tremendous information about the patient’s history,” Nace added.

“That’s what should be done to try to best manage and get past that potential barrier, when a long-term care provider might not be familiar,” he said. “There will be patients admitted to almost all long-term care facilities, and we just need to be mindful and recognize what we can do.”

Limited risk

A 2024 study found that healthcare providers’ age, experience, limited HIV knowledge and fear could be linked to discrimination. In long-term care, which attracts many first-time frontline caregivers with little healthcare experience or specific HIV training, the danger is very real.

It’s becoming more concerning as those with HIV age. They often need skilled nursing earlier than peers without the virus. They also still often face admissions and caregiving discrimination.

Wilder encountered a stunning example in her state of Minnesota last year. A long-term care provider hired a local AIDS education training center to provide on-site education after discovering that one of its staff members was refusing to touch a resident living with HIV.

“Many of the direct care staff were from other countries, and they had never gotten education on what HIV is, how it is and how it is not transmitted, and what universal precautions should be taken for everyone,” she recounted.

The training led to changes in caregiving, and it also led to a better understanding in the community and among resident and staff families, Wilder said.

Thirty years ago, when HIV cases were more commonly seen in long-term care, such training would have been more likely. So, too, would many of the pop culture references that helped America begin to understand the AIDS epidemic. Visibility, education and even celebrities who publicized their illnesses changed public and professional perceptions.

Hartman was hired to work on a specialty HIV unit in the 1990s, at a time when her state was paying tuition to entice recruits.

“They front-loaded a great deal of education,” she said. “But I think it was not only the fact that we got really in-depth about transmission; it was that we were trained to not be worrying about where a person contracted HIV. … Risk factors are not what makes up the person.”

Standardizing respect and precautions

That’s a perspective Hartman tries hard to instill in new coworkers today. So does Lacinak, who said new hires may picture “horror stories” from the AIDS epidemic. She relies on a standard but powerful line when asked if she’s afraid to work with patients who are HIV-positive.

“I’m well aware of my patients having HIV. The person you’re caring for, you don’t really know what they
have. That’s why I focus on treating everyone the same. Treat everyone with standard precautions.”

Threats today are greatly reduced compared to the 1990s. If a patient’s viral load is undetectable, the risk of HIV transmission through an accidental needlestick is less than 1%, according to the CDC.

“More normal things that would be seen in longterm care, like urine, saliva, vomit, feces, nasal secretions, these wouldn’t put anyone at risk for viral transmission,” McBeth noted.

Today, healthcare workers can receive postexposure prophylaxis, or PEP, within 72 hours of an incident to reduce exposure risk even more. Despite advances to protect patents and healthcare workers, Nace believes fear persists due to a lack of knowledge.

“Staff might be worried because they have all these misunderstandings or lack of understanding,” he said. “It’s sometimes helpful, from the medical director’s standpoint or the attending physician’s standpoint, spending that time with the staff and asking the staff what questions they have. … That might allow better care to be delivered.”

Another helpful strategy? Remembering that precautions such as handwashing and glove wearing work both ways — protecting patients with HIV who are, by definition, easily susceptible to infections introduced by others.

“We shouldn’t be scared of people with HIV. They actually could be scared of us,” Wilder said. “We could bring them a cold. We could bring them COVID. … They’re the ones taking HIV medications to support their immune system.”