![\"Annamarie](\"https:\/\/today.uconn.edu\/wp-content\/uploads\/2023\/11\/231129-Anna-Shand-preferred-portrait-864x864-1-300x300.jpg\")
Shand was under the care of Dr. John Shanley for 15 years, and became Dr. Kevin Dieckhaus<\/a>\u2019 patient when Shanley retired.<\/p>\n \u201cI was given the ultimate care by my medical team, which included nurses and medical case managers from the very beginning,\u201d Shand says. \u201cI didn\u2019t think I could survive, but my care at UConn is the reason I am still here today living and breathing.\u201d<\/p>\n Yesterday, the Unionville resident celebrated her 58th<\/sup> birthday.<\/p>\n \u201cThere\u2019s no way I still would be living with HIV if I hadn\u2019t been here,\u201d Shand says.<\/p>\n Andr\u00e9 McGuire, 65, has lived with HIV for three decades, and for the last 10 years he\u2019s been a patient of Dr. Lisa Chirch<\/a>.<\/p>\n \u201cShe\u2019s been great,\u201d McGuire says. \u201cShe stays on top of new things. I don\u2019t have to go in there and worry about whether or not she\u2019s heard about some of the newer stuff, because she has.\u201d<\/p>\n McGuire says his treatment over the years has kept his HIV largely undetectable.<\/p>\n The longevity of both patients is a testament to their treatment adherence, the term used to describe those who stay current with the recommended medications.<\/p>\n But often, those living with HIV are dealing with more than managing their viral load, and another factor in their success is the support services available through the Ryan White HIV\/AIDS Program, which has been in place at UConn Health for more than 20 years.<\/p>\n \u201cThe Ryan White staff provides a valuable service in medical navigation and care coordination for HIV patients,\u201d says Dieckhaus, chief of UConn Health\u2019s Division of Infectious Diseases. \u201cAs an extension of traditional medical services, Ryan White care coordinators provides patient-centered care that emphasizes linkage to medical care and adherence to medications. However, importantly, the team also addresses the myriad of social, economic, mental health, and other issues that can potentially impact medical outcomes in those with HIV infection.\u201d<\/p>\n Named for an Indiana boy who was 13 when he was diagnosed with AIDS after a 1984 blood transfusion, Ryan White is a federal grant-funded program for patients to help remove barriers to managing their disease.<\/p>\n Patients who have established care with a UConn Health infectious diseases provider and who meet certain income qualifications are eligible for UConn Health\u2019s Ryan White program. Clinical staff help with treatment adherence and preventive care, and medical case managers help them with resources to meet their other needs, such as recommended medical appointments, transportation, utilities, food, prescriptions, housing, and clothing.<\/p>\n Amy Clark is the assistant nurse manager who oversees UConn Health\u2019s Ryan White program, which exists within the infectious diseases practice. She says the face of the Ryan White program is nurse Dezrene Atkinson.<\/p>\n \u201cIf you\u2019re new to our clinic or newly diagnosed with HIV, Dezrene is the first person who\u2019s going to come out and see you and talk about barriers,\u201d Clark says. \u201cShe administers vaccines, assists with scheduling medical and dental appointments, and will coordinate clinic services.\u201d<\/p>\n Eileen is my crutch… She goes above and beyond for us. And when you see people do that you tend to try to do your part as far as following directions, keeping up with your medical care. — Annamarie Shand<\/cite><\/p>\n<\/blockquote><\/span><\/p>\n Joining Atkinson and Clark on the team are treatment adherence nurse Jeanne Urso, community health specialist Eileen Torres Gonzalez, and community health worker Blaise Gilchrist.<\/p>\n \u201cOur ultimate goal is for patients to stay in care and feel welcome when they come to the clinic,\u201d says Clark, who also is a treatment adherence nurse. \u201cAnytime a Ryan White patient comes for an office visit we make ourselves available, whether it\u2019s myself as treatment adherence nurse or a medical case manager, we want to make sure that health care services and barriers are being addressed.\u201d<\/p>\n Clark uses a recent interaction to illustrate how patients become clients: An infectious diseases physician referred the patient, noting some of her challenges, and Gilchrist met with her.<\/p>\n \u201cHe described what our services are, and she identified that she does need help with transportation, that she does need help filling out energy assistance paperwork, because she recently lost her house, and does not have winter clothing, so we can set her up with that,\u201d Clark says. \u201cShe\u2019s taking her medicine as prescribed, so she did not need my service for treatment adherence.\u201d<\/p>\n Others have need for both case management and treatment adherence, and are paired up with Gilchrist or Torres Gonzalez to be their case manager.<\/p>\n \u201cAt a minimum, our case managers connect with our patients monthly,\u201d Clark says. \u201cSome of our clients need more support and will reach out daily or weekly. Our case managers are a solid source of support and have become like family. They are often open to sharing their struggles with family, employment, mental health, or substance abuse.\u201d<\/p>\n <\/p>\n <\/p>\n Torres Gonzalez has been working with Shand as her case manager for about 15 years. She credits that relationship for keeping her healthy, and believes the medical case management is the most important aspect of the Ryan White program.<\/p>\n \u201cAll of my services that I get for my health comes through my medical case management; they don\u2019t miss a thing,\u201d Shand says. \u201cEileen is my crutch. Eileen is that push you need when you feel like your buttons don\u2019t work anymore, when you don\u2019t have the energy to get up and do it anymore. She goes above and beyond for us. And when you see people do that you tend to try to do your part as far as following directions, keeping up with your medical care.\u201d<\/p>\n Torres Gonzalez also has served as McGuire\u2019s case manager.<\/p>\n \u201cShe\u2019s able to find everything,\u201d McGuire says. \u201cIf I needed help with something, I just told her what it was and she\u2019d figure it out. And then I appreciated that because I already had enough things that I had to deal with in terms of trying to make sure I had a place to stay, trying to make sure that I had income, trying to make sure that I had food. And they even helped with transportation a great deal. Having somebody there who had an understanding of the program and was willing to do some of the legwork to get some of the needed services was a big relief.\u201d<\/p>\n <\/p>\n That\u2019s one of the things that I appreciate about being there at UConn, because that was their goal. It wasn\u2019t to keep you there forever, but to prepare you to move on. <\/p>\n \u201cI want to make sure that they know that I am here to help them, and my best interest is that they remain healthy,\u201d Torres Gonzalez says. \u201cWhere I\u2019m coming from, I have no problem telling them, \u2018You haven\u2019t picked up your medication in a week, it\u2019s been there at the pharmacy. Why haven\u2019t you picked it up? You missed two appointments in a row. I am here to help you, and I want you to be healthy, but if you don\u2019t comply with your end of the bargain, then how am I going to help you?'”<\/p>\n Shand acknowledges the importance of this, and says it\u2019s another reason for her survival.<\/p>\n \u201cNot everybody is honest with their life, not everyone is as open as I am,\u201d Shand says. \u201cSo when you\u2019re not open with your doctors, or your case managers, or whatever support you\u2019re getting, your life is like a circle, you\u2019re just going around in that circle and it never stops. So not only is Eileen dealing with someone like me, I\u2019m open with HIV and I listen and I\u2019m happy with my services, but then you have some people who may take their income and they\u2019re doing drugs, but they\u2019re not going to tell her that.\u201d<\/p>\n Even so, Torres Gonzalez says she can often tell when clients are struggling with drugs or alcohol even when they don\u2019t admit it. What she struggles more with is helping clients get past the stigma of HIV that often persists.<\/p>\n \u201cThat is the biggest challenge,\u201d Torres Gonzalez says, \u201cClients are not wanting to come to their medical appointments because there\u2019s a big sign there that says \u2018Infectious Diseases.\u2019\u201d<\/p>\n Clark notes that there is no distinction in the waiting area that makes patients identifiable by their condition.<\/p>\n McGuire, who lives in Waterbury, is the founder and pastor of ALM\u2019s Ministries International, a Hartford nonprofit with a mission of building struggling neighborhoods through education, support, resources, and the Christian faith. With steady employment, transportation, and his own home, he effectively has graduated from UConn Health\u2019s Ryan White program, in that he no longer requires a regular case manager.<\/p>\n \u201cThey\u2019ve done quite a bit to help me move along to where I need to be,\u201d McGuire says. \u201cThere are other people who will come behind us who are going to need some help. I know not everyone is capable, but for those who are, we need to work with them to a point where they can become independent. And that\u2019s one of the things that I appreciate about being there at UConn, because that was their goal. It wasn\u2019t to keep you there forever, but to prepare you to move on.\u201d<\/p>\n And in the meantime, it\u2019s about removing obstacles.<\/p>\n \u201cUConn is my safety net,\u201d Shand says. \u201cI don\u2019t have to worry about it, if something happens to my medical, I can still get my medication, they\u2019ll cover certain doctor visits. If I have, God forbid, a problem with homelessness or anything, they have so many different programs to use here.\u201d<\/p>\n I can assure anyone needing HIV or medical care that at UConn, U CAN survive! — Annamarie Shand<\/cite><\/p>\n<\/blockquote><\/span><\/p>\n The medication regimen has become less complex, making treatment adherence less of a challenge than it was in the 1990s. UConn Health Ryan White clients range in age from the 20s to the 70s; their needs range too.<\/p>\n \u201cWe have patients who will come to the clinic for an appointment with another specialty and will want to see their case manager and say, \u2018Do you have a minute,\u2019\u201d Clark says. \u201cTransportation is often difficult. Many of our patients take the bus or will have other arranged transportation, so they will stop by or schedule a visit with their case manager after a scheduled clinic visit with their providers for assistance with scheduling appointments, filling out paperwork, or job applications.\u201d<\/p>\n Case managers will visit people in their homes, sometimes to drop off bus passes, other times to get paperwork signed.<\/p>\n \u201cOne of our philosophies is, \u2018Meet you where you are,\u2019\u201d Clark says.<\/p>\n In 1996, Shand had a daughter, born HIV-negative, who remains so to this day at age 27. She credits a drug she took as a participant in a clinical trial at UConn for making that possible. She makes a point of sharing this because she wants to \u201cinform any woman who is pregnant and afraid to get care.\u201d<\/p>\n And she has a message for others living with HIV:<\/p>\n \u201cI can assure anyone needing HIV or medical care that at UConn, U CAN survive,\u201d Shand says. \u201cThank you, UConn Health, for giving me the care and tools to survive!\u201d<\/p>\n <\/p>\n Patients who have established care with a UConn Health infectious diseases provider and who meet certain income qualifications are eligible for UConn Health\u2019s Ryan White program.<\/em><\/p>\n![\"Patient](\"https:\/\/today.uconn.edu\/wp-content\/uploads\/2023\/11\/231103_132013018_Torres-HIVpatient-Atkinson-1500x1000-1.jpg\")
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\n — Andr\u00e9 McGuire<\/cite><\/p>\n<\/blockquote><\/span><\/p>\n\n