Guiding People Living with HIV to the Recovery Finish Line

As runners in the recent New York City marathon were reminded, the course is 26.2 miles long. Stopping at mile 26 isn’t good enough — in fact, those last 385 yards can be the toughest. That applies as well to the remarkable, tireless efforts of the medical research and healthcare communities who are working together to bring the AIDS epidemic to an end — a finish line that is today clearly in sight.

The HIV virus has taken more than 35 million lives worldwide since it was first identified in 1984. But today, the combination of revolutionary antiretroviral drugs, innovative treatment modalities, outreach, education, and robust networks of expert providers and care coordinators has changed an HIV diagnosis from a virtual death sentence to a challenging path to a treatable, ultimately preventable disease. In fact, a 2017 study cited in MedicalNewsToday.com reports that the additional life expectancy for a 20-year-old AIDS patient, which was 11.8 years in the days of more primitive monotherapy treatment, has incredibly risen to 54.9 in the current combination antiretroviral treatment era — and most HIV-positive people who quickly get on treatment today are expected to live as long as the general population. 

A committed cohort of healthcare practitioners is helping to control the virus and end its spread by coordinating the care and the vitally important treatment plan adherence of people living with HIV. I’m very proud to say that in keeping with its 126-year mission of compassion and care for the indigent, the chronically ill, and elderly New Yorkers, the Visiting Nurse Service of New York (VNSNY) — the non-profit where I work — is playing an important role in controlling HIV in the New York City area through its CHOICE SelectHealth Medicaid Special Needs Plan (SNP).

SelectHealth’s approach aligns well with New York State’s Ending the Epidemic initiative, started in 2014 by Governor Andrew Cuomo. This laudable program focuses on identifying those with undiagnosed HIV, connecting them with the care needed to suppress the virus and prevent further transmission, and making pre-exposure prophylaxis (PrEP) broadly available. And, it’s working. The unique partnership between these public and private entities serves as a blueprint for HIV/AIDS cessation efforts across the country.

SelectHealth SNP Recognized with First-Ever Service Area Expansion

Introduced in 2003, Medicaid SNPs were established as a way to battle severe, debilitating chronic illnesses like HIV or hepatitis C by enrolling high-risk individuals and providing a targeted program of specialized care that addresses the unique issues those members face. VNSNY and other insurers were tapped by the New York State Department of Health (DOH) to operate SNPs for HIV-positive residents within the five boroughs of New York City. This fall, VNSNY was singled out for its exceptional results and role as a leader in AIDS treatment: the DOH approved SelectHealth’s expansion to include Nassau and Westchester counties — the first time the state has authorized an HIV special needs plan for enrollment outside of New York City. 

SelectHealth currently cares for about 3,000 New York City-based members with HIV. It’s estimated that Nassau and Westchester both have several thousand residents who are HIV-positive, about half of whom are eligible for Medicaid. This expansion will give hundreds of additional HIV-positive individuals access to enhanced support for managing their conditions and keeping their viral load suppressed — which not only helps those individuals stay healthy and improves their day-to-day lives, but also means they can’t transmit HIV to others. (also known as U=U, undetectable equals untransmittable).

Simply put, the focus for an HIV-focused SNP like SelectHealth is to break down barriers to treatment. The plan covers care delivered in specialized facilities or in the home that is coordinated and monitored by doctors and other practitioners who are experts in treating HIV patients. In addition to a broad array of medical, hospital, and prescription drug benefits, services provided can include coordinating doctor visits; helping with the vitally important adherence to medication regimens and treatment plans; referring members to mental health and substance use services; helping them sort through benefits plans; and arranging for family counseling, legal help, and other types of support.

Great Success with Viral Load Suppression

By any measure, SelectHealth is on the right track. In addition to their approved service area expansion, the 2019 New York State Quality Assistance Reporting Requirements (QARR) report showed that SelectHealth increased from 83 to 85 the percentage of its members who are virally suppressed, which means that antiretroviral therapy has reduced these individuals’ viral loads to an undetectable level.  SelectHealth leads all SNPs in the state in terms of HIV-positive members’ viral suppression rate.

According to VNSNY Senior Vice President Tom Dwyer, who oversees the SelectHealth plan, “Our success in New York City can be attributed to focusing on care coordination — one of VNSNY’s long-recognized strengths— and the fact that that top-level care is delivered by best-in-class HIV specialists, including our staff and those in designated AIDS centers, affiliated with teaching hospitals. We’ve built networks of the same quality in Westchester and Nassau Counties.”

SelectHealth also makes things simple for both members and providers — for example, helping them cut through red-tape when obtaining preauthorization of certain services and HIV medications. In addition, members can receive care from specialists in a wide range of medical specialties, and their dependent children can also enroll in the plan with them.

Once members are enrolled, SelectHealth strives to build relationships of trust with them by ensuring that the services provided are culturally competent, gender-affirming, and performed with the highest level of confidentiality and respect. Indeed, SelectHealth has received Platinum-level certification from the LGBTQ advocacy group SAGE (Services and Advocacy for LGBT Elders) — signifying that its staff have been trained in cultural competency and sensitivity related to sexual orientation and gender identification. 

The Fight Continues

The biggest remaining battle, and one that my company is actively engaged in, is bringing this level of care to the hardest-to-reach individuals. According to HIV.gov, approximately 1.1 million people nationally are living with HIV today, and 15 percent of them are unaware of their infection. Undiagnosed individuals and those whose treatment plans have been interrupted are often on the periphery of society, out of the reach of the safety net and unable to care for themselves. Ever since 1893, when our founder Lilian Wald began to provide healthcare to the indigent in a settlement house on New York’s Lower East Side, it’s been in VNSNY’s DNA to care for New York’s most vulnerable populations. SelectHealth succeeds in part because of its inclusive focus on helping the full range of potential victims of the HIV epidemic writ large. As the universe of advanced-HIV (formerly known as AIDS) patients gets older and less numerous, the plan has begun seeking out at-risk individuals outside mainstream society who may be transgender or gender nonconforming and either HIV-positive or negative, including those who are transient or living in a homeless shelter.

The story of HIV-positive SelectHealth member Anthony (not his real name) illustrates the effectiveness of SelectHealth’s approach. A few years ago, his life was unraveling. Depressed, unable to work, and uninterested in staying healthy, Anthony had out-of-control HIV virus levels as well as a substance-abuse problem. He eventually lost his home and moved in with a relative.  A VNSNY social worker — following up on Anthony’s insurance records, which showed his viral load was through the roof and that he had stopped seeing his doctor and refilling his medications — found him through that relative. With the social worker’s persistent encouragement, Anthony enrolled in SelectHealth and resumed a treatment plan that seemed to immediately brighten his outlook. After months of interaction with an interdisciplinary team including the social worker, a SelectHealth care coordinator, and a physician, Anthony is back on his wellness regimen. He is enrolled in a pharmacy program that delivers medicines directly to his room, receives substance abuse counseling — and, most important— his viral load is undetectable. He is even looking to get back on the job market.

“My SelectHealth social worker looked out for me when I wouldn’t look out for myself,” Anthony says. He has spread the word among his friends that SNPs can be a lifesaver.

In a sense, SelectHealth is changing the paradigm by proving that this highest-risk group can be reached, brought into treatment, and supported in ways that empower them to maintain wellness and quality of life. “We’re committed to bringing the most vulnerable individuals into regular medical care,” Tom says. “We use a peer outreach model that helps identify potential members through red flags in their healthcare records. We are literally out there knocking on doors, and that really distinguishes us from any other health plan.” 

Looking Toward World AIDS Day

Anthony is one of the estimated 36.7 million people around the globe who are currently living with HIV/AIDS. Sunday, December 1, is World AIDS Day, a time each year when we remember and attempt to comprehend the scope of this devastating epidemic. It’s also a time for us to acknowledge the dedication shown by so many to bring this disease under control—and to renew our commitment to the difficult job still ahead of us, to finally put an end to the nightmare of HIV/AIDS. Tom Dwyer notes that, as part of this effort, “Looking forward, VNSNY is advocating for creating a drug program to advance the adoption of PrEP (pre-exposure prophylaxis)—a kind of vaccine that at-risk individuals can take, as another way to help end the epidemic.”

We haven’t ended the epidemic quite yet and the fight is still on for sure, but as we learn to manage the virus and improve access to care, we are changing lives for the better. We at VNSNY are proud that our SelectHealth team is doing its part to help members like Anthony. We know that success for those living with HIV is measured not only by a decreased viral load but also by the ability to live an independent, healthy life — and not only crossing that finish line, but seeing their disease fade into history as a scourge of the past.

Dr. Hany Abdelaal is president of VNSNY CHOICE Health Plans and has devoted his professional training and medical career to improving the quality and coordination of health care for older Americans.