USCA: 2017 “See You in DC!”

 

 

 

 

 

Dear Eric,
This is the final communication prior to seeing everyone at the United States Conference on AIDS. The 2017 meeting has already surpassed the registration numbers from both the 2015 and 2016 conferences. In other words, there will be lots of people. Please be patient and use your time standing in line to meet your colleagues from across the country.

If this is your first time attending USCA, you may be surprised by the diversity of attendees. Typically, 60% of the participants are people of color, 55% are women, 30% are people living with HIV, 75% of the men attending are gay men, and there is a significant delegation from the trans community. USCA strives to have representatives from all 50 states and the territories. In other words, this is a community conference that reflects the full scope of the epidemic. If you’ve never been to USCA, you will quickly see the difference from other conferences. We are proud to offer a safe space for people to be themselves without judgement or discrimination. The 2017 meeting will be a USCA Family Reunion and our family values are built upon diversity, inclusion, and acceptance.

It’s been a challenging time in Washington. I believe that is why this year’s meeting is so important. People are fearful about the future. Between healthcare reform and the possibility of cuts to the federal HIV budget, attendees are seeking answers and community. While we may not have all of the answers, we will definitely have community. This year’s USCA is structured to not only train, but also to remind us why we do the important work that must be done. For many of us, this movement is more than just a job; it’s our life and the lives of our communities. In a world that can be very mean to people who are different, USCA celebrates our strange and wonderful family.

Latest Conference Information
To get the latest information on the meeting, download our smartphone app. It is a virtual portal of session descriptions, social media engagement, and logistic updates you will need to make the most of your conference experience.

Houston & SE Texas
USCA will have a moment during the Opening Plenary to stand-up for Houston and SE Texas. Six weeks after Katrina, NMAC brought a group of donors to New Orleans to see the devastation. As soon as Houston is ready, we intend to work collaboratively with other national organizations to support people living with HIV and HIV services in the region.

Recently, I received an email from Deondre Moore who lives in Houston and I wanted to share a small portion:

“USCA, for me, will hopefully be a time to heal and where I can refocus and get back on track. More importantly, during USCA it will be my first time seeing my mother since before the storm, and I cannot wait.”

After Katrina, we brought a small group of HIV leaders from New Orleans to DC to begin the planning process of moving forward. I remember how grateful they were for the meeting because it was the first time they could take a hot shower. This is another tragedy that we must and will overcome.

Hashtag
Use the hashtag #2017USCA. We’re not looking for stories about NMAC. We want you to tell the stories of people you meet at USCA, people who have committed their lives to ending the epidemic. Help expand the discussion about HIV on social media. Remember to post your photos!

Travel
Most people will arrive at either National Airport or Union Station. The quickest way to the hotel is via metro. The closest Metro stop to the Marriott is Convention Center on the GREEN and YELLOW lines. The Yellow line goes directly to the airport.

Hotel
The 2017 host hotel is the Marriott Marquis, 901 Mass. Ave NW. All of the workshops and plenary sessions and the exhibit hall are here. Unfortunately, the Marriott along with three other conference hotels are sold-out at the conference rate.

 

Registration
Registration starts on Wednesday, September 6th at 4 PM. It will be on the mezzanine level of the Marriott. To be greener and to save money, USCA only prints a “limited” number of program books. However, the full content can only be found online. The conference will have free Wi-Fi so remember to bring your laptop or smartphone.

Other Events
When putting your schedule together for the meeting, think about adding the Opening Reception, Film Screening, and the House Ball by Casa Ruby to your things to do. These are great ways to network with fellow attendees and celebrate the diversity of our movement.

The Opening Reception is on Wednesday, September 6th from 6 PM to 8 PM. It is at the Library of Congress in the James Madison Memorial Building, 101 Independence Ave. SE. The closest subway stop is the Capitol South metro located on the Orange and Blue lines. Congresswoman Maxine Water, Congresswoman Barbara Lee, and Congresswoman Ileana Ros-Lehtinen will be our special guests.

There will be a special screening of Nothing Without Us: The Women Who Will End AIDS on Friday, September 8th at 7 PM in Shaw (meeting level 3 of the Marriott). This 70-minute film reveals that no plan to end the HIV epidemic will be complete until it addresses the complex realities of all women’s lives.

Finally, there is a House Ball produced by Casa Ruby on Saturday, September 7th. The Ball starts at 8 PM in the Marquis Ballroom at the Marriott. It is free for conference attendees, although there is a $25 cover for everyone else. All funds raised go to benefit Casa Ruby. This is a special opportunity to experience the culture and glamour of DC’s trans community.

Thank you for being part of my strange and wonderful family. I look forward to seeing you in DC.

 

Yours in the struggle,

Paul Kawata

 

A Special Note from USCA Media Sponsor FHI 360
Hello USCA Partners,
We are excited to be partnering with FHI 360 again this year to provide you and USCA conference attendees a curated live coverage of experience through their Crowd360 web platform. Through Crowd360, FHI 360 will leverage the 2017 USCA social content being shared over multiple platforms (Twitter, Facebook, Instagram, Blogs, Conference Mobil App, etc.) and curate it into three different delivery vehicles. As in the past, these vehicles include:

2017 USCA Hub – The home for digital content being shared at 2017 USCA.
2017 USCA Daily Delivery – A HTML-based recap of the digital content and conversations taking place the previous day.
2017 USCA Live Social Blog – A crowd-sourced live blog created from live coverage being shared on social media (Twitter, Facebook, Instagram, Conference Mobile App, etc.).

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Medicaid Value

Medicaid is big and growing — but should it be reined in? Alexandrta Bachert, Staff writer for MedPage, discussed the value of Medicaid and I thought that it would be important in light of the budget and new health care policy cutting back on Mecicaid. The House Republicans and the White House have recently proposed massive reductions in the Medicaid program, which could shave more than $1 trillion from projected expenditures over the next 10 years.

Much of the debate over these cuts has centered around the effects on children and the poor, but about 40% of the Medicaid budget pays for long-term care for the elderly, many of whom are poor only on paper. In this edition of “Friday Feedback,” experts discuss the critical role Medicaid plays in the healthcare system, particularly for America’s increasingly numerous seniors, and what might happen if funding is slashed.

To what extent has Medicaid gone off the rails, relative to its original intent? Or was the original intent faulty?

Diane Rowland, ScD, Kaiser Family Foundation: The original intent was that Medicaid would be a companion to Medicare in meeting the health needs of the nation’s poor and disadvantaged population — a role it has filled well.

Hemi Tewarson, JD, MPH, National Governors Association: Medicaid is now the largest public payer of health insurance, covering 1 in 5 Americans in 2016 and half of all births nationally. The magnitude of the program and its complicated structure has certainly evolved since the program’s inception. However, the program is still serving our nation’s most vulnerable populations, through a federal-state partnership, which was the original intent of the program.

Leighton Ku, PhD, MPH, George Washington University: Medicaid always had a broad mission to serve the needy, including low-income children, adults, the elderly, and the disabled. It has kept that mission, but broadened it over time as it became necessary — as we learned of the importance of home and community-based care and of difficulties that low-income adults have getting insurance.

Sara Rosenbaum, JD, George Washington University: Medicaid’s purpose always has been to help people gain access to medically necessary care. Over a half century, Congress has repeatedly and steadily expanded the range of people in need who can qualify for Medicaid. What makes it so unique is its ability to evolve over time. There is nothing about the adult expansion that in any way is at cross-purposes with its original “intent.”

Tom Buchmueller, PhD, University of Michigan: I wouldn’t describe Medicaid as going off the rails. Going back to the program’s origins, it was political considerations that led to Medicare being a universal program and Medicaid being means-tested. Very quickly, Medicare became a cherished and politically sacrosanct institution, while Medicaid has struggled for political support. But now that Medicaid is the larger program in terms of enrollment, we need to recognize it for what it is: a critical part of the healthcare system.

Kenneth Brummel-Smith, MD, Florida State University: I don’t think it has. The original intent was to help states provide medical care to poor residents. Prior to 1965, old and poor people were more likely to die from treatable conditions than after Medicare and Medicaid were passed. The problem with Medicaid is that the states (and the feds to some degree) have never put enough cars on the tracks to handle the need.

Chris Pope, Manhattan Institute: The original intent of Medicaid was somewhat nebulous. The program has always given enormous discretion to states – in terms of which services are covered, who is eligible for them, and how they are delivered. That said, the program has been expanded by Congress over time, and the 1999 Olmstead Supreme Court decision greatly expanded the entitlement to long-term care in the home.

Matt Salo, National Association of Medicaid Directors: Medicaid didn’t set out to be the largest payer of long-term care in the country, but since Medicare doesn’t offer a comprehensive benefit; we’re there to pick it up. Medicaid probably should be “less necessary” in the healthcare system than it is today, but the fault doesn’t lie within Medicaid and that certainly doesn’t mean that Medicaid is broken and needs knee-jerk fixing. It means that the broader healthcare system is broken. To really fix Medicaid, you have to ensure that the roles it plays today are adequately and affirmatively picked up somewhere else.

How much of a problem is it that so much of eldercare is now dependent on Medicaid?

Brummel-Smith: It’s huge and going to get bigger. The aging of the population means more will need help with medical care and the older population is high consumers of healthcare. Here’s the paradox of providing good care — people live longer which means they’ll need more long-term services and supports. They don’t want to buy long-term care insurance, or they can’t afford it. And the size of families is decreasing meaning they’ll be fewer family caregivers. And we have an anti-immigration attitude, yet immigrants are the main people who are willing to work in these jobs. A perfect storm.

Buchmueller: The patchwork system we have for financing long-term care has many problems that will only become more challenging as the population ages. It is too bad that we are spending so much time and energy fighting about Obamacare — and trying to undo its real successes — instead of trying to address the issue of long-term care and other real issues that the U.S. healthcare system faces.

Pope: Family has always taken most of the responsibility for caring for older adults, largely uncompensated, and often at substantial personal cost. This remains the case, but families are more fragmented than they used to be and people are moving further for work — this increases the need for paid care. There will not be enough money for the government to cover all long-term care services for everyone, and so it is essential to limit Medicaid long-term care to those who have no other sources of assistance, and find ways of leveraging alternative resources wherever possible.

Tewarson: As Medicare and other commercial plans do not cover most nursing facility services and home and community based services, Medicaid is often the only option and as a result, is now the single largest payer of long-term services and supports (LTSS) in the U.S. If federal Medicaid funding was capped, states may need to consider different options, which could include reducing the number of individuals receiving LTSS in states that have a rapidly growing elderly population.

Rowland: Medicaid was always intended to help those on Medicare who were low-income and needed assistance with filling Medicare’s gaps — especially for long-term services. Because efforts to broaden long-term services beyond Medicaid have not succeeded, Medicaid remains the primary source of help for elders in nursing homes or needing help with long-term care in the community.

George Grossberg, MD, Saint Louis University: People are too dependent on Medicaid to pay for long-term care, especially nursing home care. Far too few have long-term care insurance or use family resources or save over a lifetime to pay for needed long-term care in the future. This places an inordinate burden on taxpayers, especially with our booming older adult population.

As for the rest of Medicaid, with the growing cost due mainly to the increasing costs of healthcare, won’t budget cuts simply deprive the poor of access to care?

Brummel-Smith: Absolutely. The biggest concern is that these folks are not good advocates for themselves — they are sick, frail, and often demented. I’m afraid that the government’s response will be following the words of Ebeneezer Scrooge — “They had better die and decrease the surplus population.”

Grossberg: Yes. Medicaid is insurance for the poor. Medicaid cuts will hurt those without personal/family resources the most, whether children or adults.

Daniel Derksen, MD, Arizona Center for Rural Health: You don’t save money by throwing millions off of coverage. That strategy shifts costs to states, to individuals and their families, and to physicians, hospitals, clinics and nurses through uncompensated and charity care. It strains credulity to cut almost a trillion dollars of federal funding to state Medicaid programs over the next 10 years, and claim that bill gives states more autonomy.

Joanne Lynn, MD, Altarum Institute: Cuts in Medicaid for the disabled elderly mean that people with no other options will be desperate before they get help, and the help will be inadequate. We will nearly triple the number of frail elderly Americans in the first half of this century. When we are old and frail, we will most likely have few financial resources and volunteer caregivers. The country should be making plans for an aging population and building more reliable and efficient systems in the few years before the Boomer generation starts hitting their years of disability. Simply cutting Medicaid won’t accomplish that.

Stephanie Woolhandler, MD, MPH, Hunter College: Rising Medicaid costs have been due to a large extent to the increasing number of people covered by that program. As employer-based insurance covered a shrinking share of the population, Medicaid filled the gap. Cuts to Medicaid are likely to result in both worse quality of care for those who remain covered, and cuts in the number covered. Many will suffer.

Rowland: With rising health costs and a growing elderly populating, reductions in the federal financing of Medicaid will place serious strains on state’s ability to maintain coverage and services for their low-income population. Both coverage and access to care are at risk.

Rosenbaum: Medicaid’s costs in the coming years are heavily driven by rising enrollment. In terms of covering the poor, Medicaid is the most cost effective means of doing so — 50% lower than private insurance for the same basket of services. Those who qualify for Medicaid because they are poor will go without access to affordable coverage if benefits are taken away. Just compare the uninsured rate among the poor in non-expansion states to that for the poor in expansion states. All of our gains will be lost.

Ku: It is very clear that Medicaid costs per person grow more slowly than per person costs in private insurance and Medicare. Medicaid is already very efficient and pays less than other forms of insurance. Federal efforts to shift costs to states will generally be problematic for states, which must balance their budgets. It may be possible to modify benefits or payment rates to become more efficient, but this is hard to do and takes time, trial, and assessment. It’s not clear that conservative politicians have the patience or temperament to figure out what works best while harming the fewest number of beneficiaries.

“Medicaid probably should be ‘less necessary’ in the healthcare system than it is today, but the fault doesn’t lie within Medicaid and that certainly doesn’t mean that Medicaid is broken and needs knee-jerk fixing.” — Matt Salo, of the National Association of Medicaid Directors, on the current debate over whether Medicaid has grown too big.                                                                                                                               “The scientists, the physicians in our country are under assault with this Trump budget.” — Sen. Ed Markey (D-Mass.), addressing a rally organized by the American Thoracic Society in Washington. Providers are now asking- how much pain will per capita caps in Medicaid bring?                                                                                                                        The administration released what it calls a “Taxpayer First” budget on Tuesday. “This is, I think, the first time in a long time that an administration has written a budget through the eyes of the people who are actually paying the taxes,” White House Budget Director Mick Mulvaney told reporters in a briefing on Monday. The plan was crafted with a skeptical eye toward programs that serve the needy. Over a decade, it calls for hundreds of billions of dollars in cuts to Medicaid, food stamps and disability benefits. Marie Lee, last week, reported that the end of Medicaid as an entitlement program is a coming, provider sand political observers say. Now the question is how much will the federal government seek to reduce its spending on the insurance program that covers 70 million people—and how much will senators listen to providers who say that care could ultimately become unattainable for people if the House version of a per capita cap is approved. 
The American Health Care Act, passed by the House in early May, aims to cut federal spending on Medicaid by $834 billion by 2026, and it’s hard to know exactly how that will play out for patients and providers, said Grady Health System CEO John Haupert.
“You would have to look at every channel Medicaid flows through,” he said. “Long-term care. Outpatient—what will be covered? What won’t? It has to come from somewhere.”
Grady sees 650,000 visits each year at six clinics and a specialty HIV/AIDS clinic, and has 27,000 inpatient admissions. It also has a 300-bed skilled-nursing facility.Medicaid covers the vast majority of patients in the nursing home, and 30% of all patients are enrolled in the program.
What he knows is that Georgia isn’t going to step in and increase funding to replacethe declining federal share.
Combined state and federal spending on Medicaid in Georgia is about $4,000 a person, 48th in the country. “There’s a reason why we’re 48th, put it that way,” Haupert said of the state’s willingness to spend on medical care for the poor. 
Cleveland’s MetroHealth system has about 280,000 patient visits a year, with half covered by Medicaid. Dr. Akram Boutros, CEO of the public hospital and its health system, fears that what will be left for Medicaid will not be enough to cover the cost of treating the population, which tends to have a higher disease burden than the general population. 
Boutros understands that providers need to find ways to bend the cost curve, whether in Medicaid or any other patient group, noting that the health system did a medical home demonstration with 28,000 Medicaid expansion patients in 2013 that resulted in $41 million in reduced costs. Ohio cut payments for outpatient Medicaid services by 5% in 2016.
“And remember,” he said, “We’ve been through this before. The American hospital system was asked to take Medicare cuts to fund Medicaid expansion.”
Katherine Hayes, director of health policy at the Bipartisan Policy Center, agreed. “Providers were asked to pay for a lot of the health reform, and now they’re paying for it again—more than paying for it again—with less coverage.”
Hayes, who worked for both Democrats and a moderate Republican senator in her time on the Hill, said the structure of a per capita cap isn’t necessarily a problem, it’s how much the federal government aims to reduce its share of spending.
“When you are putting in $834 billion in Medicaid cuts, you cannot make up the difference by scaling back eligibility of the Medicaid expansion,” she said.
Georgia never did a Medicaid expansion, which Grady estimates would have brought $25 million in revenue to the system. Still, Grady reduced its uncompensated care by $68 million, going from the equivalent of 41% of total revenue to now 28%. The system hired navigators to get qualified patients enrolled in Medicaid.
Because the ACA’s phase-out of disproportionate-share hospital payments was delayed, Grady still receives $80 million a year. The phase-out would have reduced it by $45 million a year.
To soften the blow of Medicaid cuts, House GOP leaders would make disproportionate-share payments permanent, for a nationwide price tag of $43 billion. Haupert said that would not nearly make up for the effects of the per capita cap.
When he was lobbying in Washington against the AHCA, he asked a Georgia Republican lawmaker why the savings couldn’t come both from Medicare and from Medicaid. He said the member replied: “If you mess with Medicare, you don’t get re-elected; if you mess with Medicaid, no one really cares. ”
Haupert said as he sees the political backlash against the AHCA, it seems that sentiment’s not totally wrong. Nearly all of the focus has been on the individual market, which is 4% to 5% of his system’s patients. Will people in the individual market who are sick have access to insurance they can afford to buy? Will modest-income older customers be able to buy plans?
He said he knows many people whose parents’ nursing home or other long-term care costs have exhausted their savings, ultimately sending them to Medicaid. Most people never think that will be them, he said, and many wrongly assume Medicare pays for assisted living and nursing home stays.
Still, Haupert believes senators are open to hearing from providers about what kinds of changes are too radical for the system.
“I think in general the Senate is doing a bit more due diligence around this,” he said. “I still sense this high level of pressure to get it done, get it done. When you’re in a hurry, that’s when you make mistakes.”
Hayes said she believes providers’ lobbying will make a difference. And, she said, senators are paying attention to the Congressional Budget Office’s scoring that showed the changes to the ACHA did little to move the dial on the number of people who would become uninsured. The most recent report estimated that 23 million people would lose coverage by 2026; scoring of the original bill in March put the number at 24 million.
Besides the direct financial implications for providers, the potential loss of coverage poses another challenge, says Dr. Nick Turkal, president and CEO of Aurora Health Care, a 15-hospital system based in Milwaukee. “The other thing that concerns me is that we’ll be going back to people coming to the emergency department in a crisis rather than getting the care they need in preventive services and primary-care services. That’s not an efficient way of getting care,” he said.
Haupert said he hopes the per capita cap allows below-average spending states to catch up to more generous states, or at least that there will be special consideration for safety-net systems like his. For Grady, the cuts to Medicare were very minor, just $8 million in the last four years. “Our margin, with county support, is around 4%,” he said, and they received $55 million from the counties they serve last year. “Without county support we’d be at about a negative 1%.”
He said when he talks with county officials about what’s happening in Washington, he can see they fear if the federal government steps back, then the bill will come due first to states, and then, they’re asking themselves, “Is this going to land in our lap?”

So, budgeting is going to impact a number of programs in all areas including health care. We need to look carefully at where the money goes and whether it is worth decreasing those programs that serve as safety nets. If we want to cover all we need to come to grips with the fact that some where we are going to find a way to pay for it all and maybe lowering taxes will impact all programs as well as health care. What other ways to we have to pay for 24 million people who need financial assistance? Think about it and yes I will be discussing this aspect further in my answer to our health care dilemma.

Happy Memorial Day to all and remember why we have set aside this day- to remember those who gave their lives for all of us., to protect our freedoms..

Florida Phasing Out Project AIDS Care, Other Medicaid Waivers

Thousands of Floridians living with AIDS could be losing financial assistance they say is essential to living a normal life, and some AIDS groups are worried the state won’t carry through on its promises.

On a recent Tuesday morning, Brandi Geoit sits at a conference table at the West Coast Aids Foundation headquarters. Across from her in the small New Port Richey office with butter-yellow walls is Dwight Pollard, a 61-year-old man living with AIDS.

Geoit tells him a new Florida law means patients like him could lose some of the financial help they’re getting through Medicaid.

“We’re not sure if you would keep your Medicaid because you’re still pending for your social security. And you haven’t qualified for Medicare yet because you’re still not old enough,” Geoit said.

Pollard no longer works, and depends on a special Medicaid waiver to cover his health care costs. Medication alone can cost $15,000 a month.

His partner, Ed Glorius, was sitting next to Pollard as he heard the news.

“It just doesn’t make sense,” Glorius said. “It doesn’t make sense to put people’s lives in turmoil. We’re better off than most and I’m freaking out. I’m waking up first thing in the morning thinking about this every day.”

Pollard is one of about 8,000 Floridians with AIDS who get help paying for doctor visits, medications and various home health services through this Medicaid waiver fund, which is called Project AIDS Care. Last month, Gov. Rick Scott signed a bill formally eliminating this waiver for AIDS, along with waivers for cystic fibrosis, developmental disabilities and elder care.

Florida’s Agency for Health Care Administration said while the waiver is going away, AIDS patients in Florida will not see a loss or gap in services. The agency declined repeated requests for interviews, but issued a written statement, explaining transition into a Medicaid Managed Medical Assistance plan.

“We will continue to provide the same services through the same providers for these individuals. The PAC (Project AIDS Care) waiver is essentially a waiver that expanded Medicaid eligibility to those diagnosed with HIV/AIDS and allowed the recipients to access needed medical services (e.g., physician services) and drugs. Given the advances in pharmaceuticals available to treat HIV/AIDS, most PAC recipients in the waiver only need those medical services and case management. With this transition, their eligibility will be maintained and they will continue to have access to the medical services, drugs and case management under the MMA waiver through the health plans. They will see no reduction in services and will be able to continue to see the medical professional they always have.”

The agency said patients will go into the Medicaid Long Term Care program starting this month. Everyone will be transitioned into it by Jan. 1, 2018.

But Geoit estimates 90 percent of her clients will not meet the requirements for long term care, which normally applies to people needing round the clock nursing.

She said her clients will definitely lose certain services that Medicaid doesn’t cover. Massages for those with neuropathy? Gone. Pest control? Gone. And services that are currently covered – like delivered meals, adult diapers and wheelchair ramps – could be lost, too.

So, she’s asked the state to clarify how it’s now different.

“When we asked them, they said, ‘Don’t worry. Reassure your client that they’ll be taken care of.’ And when we asked them point-blank what happened, you know, we were under the impression that a single adult still does not qualify for Medicaid. Has this changed? And they ended the conference call,” Geoit said.

Her program – a non-profit – exists only to manage the Project Aids Care waiver money for 325 clients in seven counties including Pasco, Pinellas and Hillsborough. With the new law, Geoit said her foundation will shut its doors by the end of the year.

For Dwight Pollard and his partner, the State Agency for Health Care Administration’s lack of answers is a concern.

“You don’t need the stress of how you’re going to pay or how you’re going to do this,” Pollard said.

But that’s his reality. And Pollard said until the state agency can give clear answers, he’ll keep searching for other programs that can help pay for his life saving medications.

Stress, Isolation Take Higher Toll on HIV-Positive People Under 50

Case Western Reserve University researchers were surprised to learn that HIV-positive people younger than 50 years old feel more isolated and stressed than older people with the disease, ScienceDaily reports. The findings were published in the journal AIDS Care in October.

The research group studied 102 men and women recruited between 2011-12 from HIV-related clinics, service organizations, and a registry of individuals with HIV. They focused on associations between stress, age, and social isolation. Participants ranged from 18 to 64 years old. The groups were divided into younger than 50 and over 50, an age cut-off frequently used by the Centers for Disease Control & Prevention (CDC) in HIV/AIDS data.

The average participant in this study was African American, 48 years old, who had managed HIV for nearly 14 years and had low income. This is generally reflective of the Midwest population with HIV/AIDS that also includes more females, primarily African American, and heterosexual women.

Researchers found that those under 50 felt more disconnected from family and friends than older people. “The younger, newly diagnosed individual may not know anyone in their peer group with a chronic illness, much less HIV,” said Allison Webel, PhD, RN, assistant professor at Case Western Reserve’s Frances Payne Bolton School of Nursing.

Stigma was a major contributor, Webel said, because younger people don’t as easily identify with having to battle a chronic illness. They may also feel blamed by others for their illness and avoid people because they are sick.

Generally, those living with HIV experience higher stress levels, according to Webel. The study’s participants reported feeling 30 – 40% more stress than HIV-negative populations. Women with HIV were especially susceptible to stress, and older people reported less stress than their younger counterparts. Webel attributed the women’s stress to such factors as the added pressures of single motherhood, poverty and low-wage employment. She also said the over-50 group, which was less stressed, had developed social networks over the years that they could rely on for support, such as getting rides to doctor’s appointments.

The study countered previous research that suggested older people with HIV have increasingly limited and fragile relationships with their friends. Webel also found that many older individuals who had lived with HIV for a longer time were willing to help the younger group learn how to manage the illness.

The researchers concluded that the younger group needs interventions with multiple approaches from health care, social services, and counseling for coping with the HIV-related stress and social isolation.