“If it wasn’t for these people, I wouldn’t be here”: How a special needs health plan is helping New Yorkers age successfully with HIV

A year and a half ago, Gregory Brown, formerly homeless and long estranged from his fourteen children, was suffering from such severe HIV, drug use and breathing problems that he was all skin and bones. He had little energy to move, and spent most of his time sleeping in the small bedroom of his single room occupancy housing (SRO).

What a difference a knock on the door can make.

“Now I’m 155 pounds, and I feel great,” says Gregory. Almost 60, he has gained thirty-five pounds and has an undetectable viral load — a key measure of HIV control. He remains sober, has enough energy to ride his bike through Central Park, and regularly spends weekends with several of his children and grandchildren. “It’s a lot of fun,” he says about pushing his grandchildren on the swings and taking them to the pool. “I didn’t do that too much when my own children were little; I didn’t really raise them.”

The turnaround began in March 2017 when outreach worker Peter Sorter, who is part of a VNSNY Select Health program funded by the New York state End the Epidemic (ETE) grant dedicated to reducing HIV statewide, knocked on the door to check in on a Mr. Gregory Brown, a high priority for follow up because his insurance records showed he had a high viral load and poor medication refill rate, and hadn’t seen his doctor in quite some time. Alarmed by Gregory’s state during the visit, Peter called in Dr. William LaRock, nurse practitioner and clinical director at VNSNY CHOICE SelectHealth, a Medicaid HIV Special Needs Plan (SNP).

Together, Peter and Dr. LaRock represent the unique collaboration that is at the heart of the SelectHealth ETE grant — an approach that includes skilled outreach workers from the Alliance for Positive Change, who accompany and navigate the way for plan members returning to care, along with medical oversight by the SelectHealth clinical director and a laser focus on having plan members return to treatment.

“Gregory, you need to go to a doctor,” Dr. LaRock said, after an initial assessment.

“Take me, then,” responded Gregory. “It’s time. I’m not well.”

Soon after, Peter accompanied him to St. Luke’s Roosevelt Hospital Morningside Clinic on Manhattan’s 110th Street. There, Gregory saw a doctor for his HIV; underwent a battery of tests on his heart, lungs and brain; had his medications assessed; was given an inhaler for shortness of breath and respiratory complications; and scheduled follow-up appointments as needed, knowing the care team would help him with transportation. He has enrolled in a pharmacy program that delivers medicines directly to his room, and takes his medications every day (“when I wake up; it’s a habit now”). He is doing so well, in fact, that he has been moved out of the program’s high-risk pool.

This extra level of outreach and care coordination is part of how VNSNY CHOICE SelectHealth is managing the care of its members with the support of its grant from New York State’s ambitious End the Epidemic initiative, which aims to reduce new HIV infections and improve the health of people living with the illness. The plan is a critical link to care that aims to reverse adherence obstacles and stabilize patients who are able to segue into Medicare plans when they become eligible at age 65.

SelectHealth contracts with the community-based organization Alliance for Positive Change, which provides outreach workers to engage its members who have fallen out of care and treatment. The main objective of the three-year grant was to increase the Viral Load Suppression rate by at least 20% in some 650–700 SelectHealth plan members who, like Gregory were initially, are flagged as no longer being in control of their HIV. By 2017, the program had more than met that goal with a 50% reduction in unsuppressed viral loads. Gregory, with his undetectable viral load and a consistent record of regular clinic visits and medications refills, is living proof of the program’s impact.

“They came into my life and changed my life all the way around,” Gregory said recently in a telephone interview. “I was very sick — real sick. They came and got me, took me to the doctor, saw to it that I started on my medication, and got me back on my feet. And here I am today. If it wasn’t for these people, I wouldn’t be here.”

HIV and Aging

In the United States, HIV is increasingly a disease of older people (National HIV/AIDS and Aging Awareness Day is September 18).

Statistics show that some 45 percent of Americans living with the diagnosed disease are age 50 or older. One reason for this is that people are living longer with the illness in check. Breakthroughs in medication and care delivery models have rendered HIV a manageable chronic illness in many cases, with a treatment regimen that’s much less onerous than it was years ago. At the same time, the health issues that can accompany aging — including chronic illnesses such as diabetes, hypertension and cardiac disease, as well as isolation — can amplify the effects of HIV in older people. “The longer someone goes with untreated HIV, the higher the stress can be on the immune system, and the more at risk a person becomes for health concerns that result from being in a constant inflammatory state,” says Dr. LaRock. For Gregory, getting older exacerbated his COPD, a chronic and degenerative respiratory illness characterized by shortness of breath, and left him extremely weak, subject to bedsores and increasingly isolated.

“Gregory’s story is a great example of what is important to think about for someone who’s been living with HIV for a long time and is now moving into their 50s and 60s,” says Dr. LaRock. “The risk profile changes for everybody as they age, but particularly for people who have not been attentive to taking care of themselves. One of Gregory’s motivations for getting back into care was the fact that he was feeling the weight of having had HIV for a number of years. He realized that if he was going to stay healthy, this was the moment for him to act.”

The Power of Showing Up

For Gregory, as with many of our healthcare plan members, the journey to health is not always smooth. There can be slipups in compliance, sobriety, diet and follow-up doctor’s visits. But one thing is consistent: The close attention SelectHealth gives to its members. “We meet people wherever they are,” says Dr. LaRock, meaning this literally — providing services wherever a member calls home — and figuratively, as in attending to each person’s needs on his or her own terms.

“In a clinic, often someone’s telling HIV-positive individuals all the things they haven’t done, which they’re well aware of,” Dr. LaRock explains. “So we try to frame it differently. We don’t wag our finger. We just say, ‘Look, we see this isn’t working. We’re worried about you. Tell us what we can do to help make this better.’ The SelectHealth team members are experts at being persistent — at showing up, even when the member doesn’t.”

Peter, whose work for VNSNY CHOICE is through our partnership with the nonprofit Alliance for Positive Change, can attest to the power of showing up. He estimates that in the last year and a half, he’s knocked on Gregory’s door a hundred times for follow-up visits and to accompany him to doctor’s appointments. “The first follow up, he didn’t answer the door. The next time, he was too tired. The next time, he said, ‘How about if you come back next week?’” But, says Peter, “I’m not yelling at him. I’m just making him another appointment. He knows I’m looking out for him.”

For Gregory, as with so many others in our End the Epidemic initiative, getting to the clinic or doctor’s office is only the first step. “You know how it is,” says Peter. “You get to your appointment and there’s a wait. Many of our members don’t want to wait, they just want to leave. It’s their last chance to not find out what’s wrong with them. If they avoid the doctor, they won’t have to know how sick they are.”

That experience resonates with Gregory. “Yup,” he says. “But SelectHealth didn’t give up. I was giving up…I was too sick. But they weren’t going to let me be that way.”