HIV Care Continuum: Keeping the Spotlight on Screening, Prevention, and Treatment
Presenters:Eugene McCray, MD, Gregory Felzien, MD, AAHIVS, Joseph P. McGowan, MD, FACP, FIDSA
Date/Time:December 18, 2014 2:00 pm ET
I’d like to remind all parties that today’s call is being recorded. If you have any objections you may disconnect at this time. Now I’ll turn the call over to your host, Ms. Leticia Davila. Thank you. You may begin ma’am.
Thank you Marcela. Good afternoon. I am Leticia Davila and I am representing the Clinician Outreach and Communication Activity, COCA with the Division of Strategic National Stockpile at the Centers for Disease Control and Prevention.
We are delighted to welcome you to today’s COCA Webinar HIV Care Continuum: Keeping the Spotlight on Screening, Prevention, and Treatment.
We are pleased to have with us today Drs. McCray, Felzien, McGowan, and Willard here to discuss current strategies to engage patients in HIV testing, counseling and medical care.
At the conclusion of today’s session, the participant will be able to 1) discuss approaches clinicians can use to engage and retain persons living with HIV and medical care, 2) explain current clinical guidelines for HIV testing and treatment and 3) describe outcomes associated with viral suppression.
In compliance with continuing education requirements, all planners, presenters, and their spouses or partners must disclose any financial or other associations with the manufacturers of commercial products, suppliers of commercial services or commercial supporters as well as any use of unlabeled product or products under investigational use.
CDC, our planners, presenters and their spouses or partners wish to disclose they have no financial interest or other relationships with the manufacturers of commercial products, suppliers of commercial services or commercial supporters. Planners have reviewed content to ensure there is no bias. This presentation will not include any discussion of the unlabeled use of a product or products under investigational use.
At the end of the presentation, you will have the opportunity to as presenters questions. On the phone dialing Star 1 will put you in the queue for questions. You may submit questions through the Webinar system at any time during the presentation by selecting in the Q&A tab at the top of the Webinar screen and typing in your question.
Our first presenter is Dr. Eugene McCray. He is the Director of the Division of HIV-AIDS prevention in the National Center for Viral Hepatitis, HIV, STD and TB Prevention at CDC. He is recognized as a world expert in tuberculosis and HIV/AIDS and has dedicated most of his career to improving the health of underserved communities in the United States and globally.
Our second presenter is Dr. Gregory Felzien. He serves as the Medical Advisor for the Georgia Department of Public Health. Dr. Felzien focuses on infectious diseases with an emphasis on HIV, TB and hepatitis in addition to caring for the needs of rural HIV-positive individuals.
Our next presenter Dr. Joseph McGowan is a Medical Director of the Center for AIDS Research and Treatment at North Shore University Hospital. The center is the largest New York State AIDS Institute designated AIDS Center of Excellence in the region.
Our final presenter, Dr. Sue Willard serves as the President of the Association of Nurses and AIDS Care. She develops quality improvement programs domestically and internationally for programs for individuals living with HIV/AIDS.
At this time please welcome Dr. McCray.
Dr. Eugene McCray:
Good afternoon. I’m Dr. Eugene McCray, Director of the Division of HIV/AIDS Prevention at CDC. I will be presenting findings from this month’s Vital Signs which is on HIV diagnosis, care and treatment among persons living with HIV in the United States in 2011.
I’ll start out by giving some background on HIV in the United States then talk about the benefits of HIV diagnosis, medical care and treatment. I will then describe the updated estimates for outcomes along the HIV care continuum which are the main findings for this issue of Vital Signs. I’ll conclude by highlighting some opportunities for improvement.
HIV in the United States - we estimate that approximately 1.2 million people are living with HIV -- a serious infection that when untreated leads to illness and premature death. Approximately 50,000 people are newly infected each year.
In 2010, the administration released a National HIV AIDS Strategy that outlined priorities and action steps for reducing HIV infection in the US.
The main goals of the strategy are to reduce new HIV infections, improve health outcomes among persons living with HIV and reduce HIV related disparities. Improving outcomes related to HIV diagnosis care and treatment are essential to reaching these goals.
HIV is still a major public health problem in the US. However, we now have important tools for achieving our HIV prevention goals.
When people living with HIV are diagnosed and receive routine medical care they can be prescribed anti-retroviral therapies or ART.
Importantly most people with HIV who regularly take ART medications achieve viral suppression meaning the virus is kept under control at a very low level in the body.
Viral suppression is the ultimate goal of HIV medical care. ART and viral suppression have two very important benefits.
First, people living with HIV infections have vastly improved health and nearly normal life expectancy when taking ART medications regularly.
Second, the risk for sexual transmission from those taking HIV is reduced by up to 96%.
How are we doing in the US in terms of helping people living with HIV to achieve viral suppression?
To answer this question we estimated the percentage of persons living with HIV who were diagnosed, engaged in care, prescribed ART and virally suppressed.
We separately estimated linkage to care for those diagnosed in 2011. For all estimates, we used 2011 data from two surveillance systems at CDC -- the National HIV Surveillance Systems and the Medical Monitoring Project.
We estimated that 1.2 million persons were living with HIV in 2011. Of those, 86% were diagnosed but only 40% were engaged in HIV medical care and 37% were prescribed ART.
Only 30% of people living with HIV achieved viral suppression.
In this graph outcomes along the HIV care continuum for all persons living with HIV are shown in green while outcomes among 18 to 24-year-olds living with HIV are shown in blue.
Outcomes are much lower at every step along the continuum among young persons. Among 18 to 24-year-olds living with HIV fewer than half were diagnosed.
Twenty-two percent were engaged in HIV medical care and 18% were prescribed ART. Only 13% were virally suppressed in this age group.
We also estimated linkage to care within three months among persons diagnosed with HIV in 2011 and found that overall 80% were linked to care within three months of HIV diagnosis.
Linkage to care within three months of diagnosis was lowest among young people aged 13 to 24 years at 73% and blacks or African-Americans at 76%.
Lastly we characterize the 70% of persons who were not virally suppressed in terms of outcomes along the HIV care continuum.
Of the nearly 84,000 persons who were not virally suppressed, 20% had never been diagnosed shown in the orange, 66% had been diagnosed but were not engaged in medical care, 4% were in medical care but had not been prescribed ART and 10% had been prescribed ART but had not achieved viral suppression.
So what did these data tell us? Most importantly the data tell us that improvements are needed across the HIV care continuum to protect the health of persons living with HIV, reduce HIV transmission and reach national prevention and care goals.
There are three main opportunities for improvement.
First, we must reduce undiagnosed HIV infections. 14% of persons living with HIV have never been diagnosed which means they cannot access life-saving care and treatment and could unknowingly transmit the virus to others.
Second, we must increase the percentage of persons living with HIV who are engaged in HIV medical care. Sixty percent of persons living with HIV were not receiving HIV medical care which is key to receiving ART and achieving viral suppression.
Finally, while there is a need to improve outcome along the continuum for everyone the greatest room for improvement is among young people.
Outcomes were lowest for young people at every step along the continuum. Expanded testing and proper links to care and treatment is critical in this age group.
How can we make these improvements? The good news is that we already have some effective tools. CDC and the US Preventative Services Task Force recommends that everyone get tested for HIV at least once and those at highest risk get tested at least once a year or even more often.
Second, we have proven effective interventions by linking and retaining patients in HIV care. These include provider notification assistance or when patients missed appointments.
Strengths-based case management which encourages patients to identify and use internal strengths to overcome obstacles to staying in care and on ART and co-locating medical and important support services together so so that both are easily accessible to the patient.
Persons living with HIV must be in HIV medical care to receive ART and achieve viral suppression.
Third, US clinical guidelines were revised in 2012 to recommend that everyone with HIV receive treatment regardless of the CD4 count or viral loads. Among persons in HIV medical care in 2011, 92% were prescribed ART and 76% achieved viral suppression.
CDC is engaged in a number of activities to improve HIV diagnosis care and treatment in the US.
Some examples are providing funding and technical assistance to state and local health departments and community-based organizations to reduce undiagnosed infections and improve linkage and engagement in care, sponsoring awareness campaigns, promoting HIV testing and treatment, conducting research on innovative ways to improve testing, retention in care and treatment adherence and expanding the use of public health and clinical data to get and keep people living with HIV in the medical care.
Everyone has important roles to play in making progress along the HIV care continuum.
For example, health departments and community-based organizations can expand HIV testing services and link people to HIV medical care quickly once they are diagnosed.
Health departments can also use their public health and clinical data to improve HIV medical care. Health providers can test patients for HIV as a regular part of medical care and test persons at risk for HIV infection on a regular basis.
They should prescribe ART to all patients living with HIV and help patients stay in care and on ART which may include linking them to supportive services such as nutrition and mental health services.
In conclusion, continued and intensified efforts are needed to improve outcomes along the HIV care continuum.
Success is needed at each step of the continuum to increase viral suppression among persons living with HIV including diagnosis, linkage to, and engagement in medical care and ART prescriptions.
Additional sustained efforts from all communities are needed to implement these known effective strategies to improve the health of people living with HIV and reduce new infections in the United States.
Finally, I’d like to end by acknowledging the many people that contributed to this Vital Signs effort. This list represents just a portion of those who contributed to this effort.
So thank you for your time and attention. And I’d now like to turn over the presentation to Dr. Felzien.
Dr. Gregory Felzien:
Thank you so much and thank you for the opportunity to come and speak about access and barriers to care. I am the Medical Advisor for the Division of Health Protection and HIV for the Department of Public Health. And I do see clients throughout the state of Georgia with a focus on rural care.
So when we talk about access and barriers to care, there are different issues that we do talk about when we talk urban and when we talk about rural care.
And we also have to consider that there are true barriers and there are perceived barriers to care and I will define that here a little bit later when I talk about perceived barriers.
But we do need to think about the individual. We need to think about the community. And we need to think about where we practice, where we live and where we care for individuals affected with HIV throughout the urban and rural settings.
So when we think about this process - so I’m having some technical difficulties but here we go. When we think about this process, I used to think about internal and external barriers.
And the list became very extensive when you’re talking about details of these issues.
And really when we boiled them down, four things really came to mind. And that was education, case management, delivering standard of care and looking at resources and community partners and really thinking outside the box.
And as we talk about this, there are ideas and concepts that can cross over these areas. But one of the main things that we have to think about is better communication throughout the system that we work in and receive care.
So when we think about education, it’s not just the individual. I mean years ago, the systems used to focus on the individual getting that individual educated about their healthcare.
But this education is about not only the individual, but their family. And that family just isn’t their mother, their father or their brother or their sister. But that family also includes their friends, their church family and their work-family where these individuals are getting either misinformation or mixed information.
And what that does is that adds to stigma and discrimination and it also adds to a distrust of the system.
And when I talk about education throughout all of these processes we want to make sure that everybody has a good understanding of what it means to have HIV and to treat HIV.
And a good example is, we do have several pharmacies that we have worked with throughout the rural areas of Georgia where they will notify the client and say that you have medications available at the pharmacy.
And when they arrive they may only get a partial (amount of) their medications for their HIV. So they may get only one medication and not the other two that were prescribed.
That individual may be contacted a few days later and asked to come in to pick up more medications but they may not due to transportation issues.
They may have to wait for the 1st of the next month to come in to get their medication. So now they’ve been on a single or a dual regiment for 30 days and we’ve had individuals develop resistance within the timeframe which has been more harmful.
So we really educated the pharmacy to make sure that all of the medications are available for the individual before they call them and have them come and pick up their medications.
We also want individuals to understand their disease process. So on the right lower aspect of this slide I do mention CD4s and viral loads but this is all aspects of disease processes.
I take care of a lot of individuals with diabetes and even though they may have diabetes for ten, 15 years I ask them what was their last hemoglobin A-1C or in this case HIV what was your last CD4 count. And they look at me like a deer in the headlights. They don’t know what those terms mean.
It doesn’t mean they’re not necessarily understanding the disease that they have but it gives us a starting place to add to their education and to their knowledge of what is considered good care for themselves and a good understanding of the disease process.
So a lot of this really is a springboard to talk about case management.
And to me, in my office, one of the most important individuals that are here are nurse case managers because they really assist individuals in remaining in care so retention is so important, or if they’re going through transition points in their life, i.e., they got accepted to college out-of-state or out of the area, they got a job out of the area that we can really assist them in transferring their care so that there are minimal gaps in therapy.
And I will give some examples of some Web sites and some tools that we use in linking individuals to care.
We also, in our office, do what’s called Life 101. So even myself, I see a new provider, I would like some basic information on how the system works, how - who do I call to cancel, to make appointments, et cetera.
And the other aspect that we do get a lot of is we will get youth in our office 16, 17 years old. And typically they’ll come with a parent and it’s typically their mother.
And what we have found when we’re asking questions it’s the mother answering the questions, it’s the mother calling the pharmacy to refill medications, it’s the mother calling the clinic to make or change appointments.
And we really try to get that youth more involved because when they turn 18, 19 and they move away from home we tend to lose these individuals because they have a lack of understanding of the medical system, what it means to have insurance, what it means not to have insurance, et cetera, et cetera.
So we really try to promote this education so that these individuals have minimal gaps in therapy.
We also look at other things. So I talked about a perceived barrier to care.
So I was giving a talk on barriers to care in a rural part of Georgia and I asked the audience so if I have a magic wand, what’s one thing we could fix today? And it was a resounding you can fix the transportation issue.
So before we talked about this they decided they’re going to take me out to lunch. And before we even got out of the parking lot, a car passed and it said taxi on it. And I said well who’s that?
And they said well that’s (Billy). He’s a local gentleman. He does taxi service on a part-time basis for our senior citizens to get them to appointments and to the grocery store. And I said ah-ha well there’s somebody we can call.
When we got to the restaurant, we pulled up next to a van. It was the biggest church in town. It said First Baptist Transportation Van.
I asked what do they do? Same thing, they help their senior citizens get to appointments, get to the grocery store, run errands.
And I said, now we have within 30 minutes, we have found two resources for our clients.
They contacted them immediately, got a Memorandum of Agreement in place, an understanding that there was travel money available through Ryan White Services.
It didn’t solve everybody’s problem but it was a springboard to help a lot of individuals. And since that time they have found resources outside of the city, outside of the county and have really resolved their transportation issue with some education.
The other aspect of keeping in mind is that was mentioned that individuals with HIV as of March 2012 should be given HIV therapy. But again if they are willing and able and there are no barriers to prevent them from receiving medication.
So what we do see on several occasions is individuals will walk the 2 miles to my office. They slept under a bridge overnight. They haven’t eaten in two days.
Their CD4 count is stable at let’s say 400. This individual does not need medications at that time. They need more intensive case management to help them with housing, to help them with food issues which we have found here in the rural area is we have found budgets through the hospital authority that we have been able to access and start food banks and not having to use other resources to be able to do this.
We also want to think about delivering standard of care. And standard of care is an umbrella term that we can use for looking at cultural competency, looking at understanding the updates on HIV care and trying to think outside the box.
For the last three years in rural Georgia, I’ve been able to have a telehealth clinic every other week which has been quite successful. And the clients are very happy. They only have to drive the five minutes or 5 miles to a clinic to be able to see a specialist that might not be in the area during that time.
So we have to really think about these processes to break down these barriers. So part of this is understanding our community partners.
So in the state of Georgia we do have a resource hub. So here, we can see a Web site that is for free. And it does not upfront ask for any identifying information about the client. And individuals can find the resources and the providers in their area that treat and test for HIV.
We also want to think about other aspects such as the PAN Foundation which we can receive medications, funding for medications for our patient population.
And I do list a number of things and let me just point out two areas and then I’ll be done for Dr. McGowan.
Two aspects that we want to think about is RX Assist. We can go into the system and input any medication and it will let us know if there is a pharmaceutical assistance program.
It will give us the 1-800 number and allow us to download the forms that are necessary to obtain these medications.
We also need to be aware that with a lot of medications, we can get a 30 day voucher and approval within 30 to 60 minutes. So these individuals who need medication sooner, i.e., if they’re on a wait list or waiting for approval through the state ADAP program we can get them on medications if necessary.
Another really good Web site is good RX. I had an individual who was taking a medication that was $76 a month. He was asking friends, church family for finances and got to the point he was unable to afford the medication.
Using good RX is not free medications but without having to put in any information on the client, it’s free. It took less than 30 seconds. We were able to print off a coupon. His cost went from $76 a month to $17 a month which he was able to afford for that particular medication.
So we want to make sure that we develop these resources and lists so that we can help our clients when they have needs.
So I appreciate everyone’s attention in talking about access and barriers to care. And I will hand this off to Dr. McGowan. Thank you.
Dr. Joseph McGowan:
Great. Thank you very much and again we appreciate the interest in this topic.
And as Dr. McCray pointed out many people are really shocked when we see how low the proportion of people with HIV who actually have long term viral suppression, how low that proportion really is.
You know, we think we’re ahead of this epidemic and when we see numbers like this we realize that we’re not.
And of course resources are very limited. There’s no big pot of money sitting out there that we can suddenly tap into to address this challenge.
We have to be very creative and very resourceful. A lot of things that Dr. Felzien just pointed out, tapping into resources that are out there, learning what the local resources are that you have at your disposal and utilizing them to identify and deal with specific barriers that a particular patient in front of you might be facing.
I think from my perspective, I’m going to tell you some of the things that we found useful in our practice. And I work in a fairly large HIV clinic.
We see private patients as well as clinic patients. We have Ryan White support. We are staffed by ID specialists. We’re just outside of New York City. It’s an urban suburban setting.
We do have a multidisciplinary one-stop shop if you will. We have a lot of supportive services. We do have case management available on site and we have a case management-based structure.
And with that in mind we have access to a lot of different tools that we can use to address the barriers that our patients face.
And I wanted - I was going to share some of those tools with you, some of the things that I think we have found to be useful.
In our particular region transportation as Dr. Felzien mentioned is an important issue. We’re not as rural as some of the areas in Georgia but where we practice everything is centered towards Manhattan.
So all transportation, everything is geared towards getting people in and out of work, not to get them up to clinics or hospitals. And we have a lot of challenges getting people into the office from that view.
There are also very few community-based options for HIV or especially comprehensive HIV care in this region and certainly not for those that include supportive services access to mental health therapy, substance use, rehab, et cetera.
The goal of our case management program has been to link and retain patients with HIV and care. And then the ultimate outcome of that would be to obtain viral suppression.
And so we believe if we can get the patients here and as you saw in the cascade once the patients are engaged in care they can often achieve a successful viral suppression. In our clinic, we had a 94% suppression rate for those persons who were in care.
So we think if we can get people down here, we can probably take care of them. It’s getting them here and retaining them in care that’s the continuing challenge.
So our plan is to - have been focused on getting the patients an appointment. So if we can get them an appointment on the books then we can follow-up on that. If they miss that appointment, that will be the trigger to take action to reach them.
So the starting point is getting them that appointment. We provide calls, automated calls and live calls to remind them that their appointment is coming up. And if they miss that appointment - that’s a marker to intervene.
So the first challenge is how do we know who is out there and who’s missing? Who doesn’t have an appointment on the books?
And if you have a large or busy or multidisciplinary practice, sometimes you can lose track of somebody unless you have a database that you can use to identify who’s missing.
So we call that prospective case management. We don’t wait until the person comes in sick. We try to identify ahead of time who isn’t in the system, who’s missing, if you will?
And so, we have an electronic scheduling system. And we can generate a monthly report of who doesn’t have a pending appointment.
And, we use as our denominator all of the patients who have been to the practice in the last two years. You could use the past one year. You could use three years depending on how far back you want to go.
But probably the trail is warm if you go back two years. If somebody has been seen in the last two years how many of those people don’t have an appointment on the books right now? And those are the people we want to try to do some interventions and outreach to.
So we start by making some calls based on the most recent contact information that we have. Those calls could be made through secretarial staff, from caseworkers, health educators, social workers just to make that initial contact.
Hey we haven’t seen you. We want to get an appointment on the books and we want to gather some information as to why they may have dropped out of care.
And many times they just forgot, or they got too busy. Maybe there’s been an insurance issue, there’s a lapse or a gap in insurance and they felt that they wouldn’t be able to be seen because they had no insurance. The transportation barrier we mentioned, childcare issues, lack of adequate housing.
And we just went through Hurricane Sandy a couple of years ago that left a lot of people with unstable housing.
Substance abuse, mental illness, people may have moved out of the region. And of course in that case we want to be sure that they have established care in the areas where they have moved.
And many times people will say, well I just felt well. You know, I haven’t been thinking about it because, you know, I feel good, why do I have to keep coming back for follow-up? And of course they require education as to why that would be important.
And if they’ve moved to a new provider we would like to ask why, you know, what was the reason? Was there some something that they found that was inadequate about the care? And that’s feedback that we would find very useful.
And then if we can’t reach them through the usual means the phone calls or other outreach that we can do just, you know, from the clerical staff then we try to employ a multidisciplinary team approach. And we try to elicit some community resources in doing that.
So sometimes if you want to use a community based case management organization or in New York State we have what we call Medicaid health homes which are geared toward high utilizers of Medicaid resources and HIV falls into that category.
Sometimes we can’t really bring those groups to work for us to identify patients if there’s no contact with that patient. If they have not been clients of those organizations, we can’t really enlist their help because we don’t have a HIPAA to deal with them. So that’s been a challenge in some cases. So we have to do some of the leg work on our own.
And some of the tools that we found that have been very important especially as a retention intervention has been when we have the patient on site we have a consistent messaging to try to get patients to make their appointment before they leave the office.
So we put up signs like the one on the upper right-hand corner. Don’t forget to make that appointment. The staff from the front desk to the medical assistants to the nurses are all presenting that consistent messaging about making that next appointment.
For new patients who come to the clinic they receive a call ahead of time often from one of the peer navigators. They’re met by the peer when they come to the office. They get an orientation, a visit, a walk around the clinic revealing all the different services, identifying staff members, welcoming them to the practice making patients feel comfortable there.
The peer educator will also provide them support when it comes time to take their medication. And they can be a real linkage to the individual to accept the diagnosis and to move to the next stages of getting treatment.
Health education is very important. That’s again, provided on a multidisciplinary level. Prepare the person for treatment, address sub optimal adherence, deal with misconceptions or stigma about initiating therapy dealing with side effects and management of side effects.
We’re lucky we have health educators and other staff here that can do that. But again, that multidisciplinary approach is needed for that.
Contact information must be obtained. Multiple, redundant forms of contact information have to be collected. We can call, text, email to reengage patients.
Make sure that you have the proper authorizations in place. Make sure you know from the individual that it’s okay to leave a message or who can I speak to or only speak to you and don’t leave a message. Those things have to be worked out ahead of time.
When you’re doing your electronic refills, which many times we’re doing now with our EMR, just click over and see if there’s a pending appointment.
We’ve picked up many people that way. You know, once its time to renew meds and they haven’t been seen. Let’s send a call out there to get them reengaged.
We do caseworker outreach. We’re lucky to have caseworkers here on site. But if you don’t set up a network with community-based organizations engage them in outpatient case management. They can get access that way to legal aid, housing support, substance use and mental health treatment, nutritional support if that’s what’s needed.
If you can’t do that on site set up a working relationship with a CBO. And don’t let those agencies work in silos. They have to work in collaboration with our medical providers.
When it comes time to give status updates, ask for feedback. Make a bidirectional exchange of information so you know what interventions are going on, you know what barriers are being addressed by the CBO and then you can also help to provide feedback to them and also inform them about the interventions that you’re doing as well. That way you’re not being (uncoordinated), you’re not overlapping and you’re utilizing resources to the best extent.
Use a pharmacy as was mentioned. It’s very important. Find out if patients are getting refills. They may have contact information on patients that you don’t have.
Utilize specialty pharmacies. They can also provide home delivery of medicines, pre-packaging of medicines, putting them into pillboxes.
We’re lucky we have a dedicated PharmD here at, the 340B pharmacy that we have. And those patients who have been engaged by the PharmD have experienced increases in the CD4s, drops in their viral loads, improved viral load suppression rates.
In one case, we were at 49% and those patients engaged with the pharmacist went up to 72% viral suppression, 28% improvement in self-reported adherence to medication. So utilize the pharmacy resources that you might have at your disposal.
Also the Regional Health Information networks, the RHIOs are very important. When your patients come in have them sign a release so that you can have access to any records that might show up on their regional health information network.
If they’re showing up in an ER somewhere or admitted to another hospital and you’re trying to find out where they are you can get that information.
Some of these RHIOs now will give you event notification. You’ll get a real-time notice if your patient shows up for care elsewhere or in an ER. And that could be really an important reason to get patients access to important contact.
Use the health department. They’re collecting a lot of information often about your patient viral loads, et cetera.
In New York we have a new law that you can obtain information about the health department it has obtained about the patients who might have accessed care elsewhere.
And check Social Security death records, prison records. And these are things that resources that are available on the state by state basis too.
We’ve be able to decrease our proportion of patients without a pending appointment down from almost 30% down below 20%. And so utilize the resources that are at your disposal, some of the practical things that I’ve talked about.
Use, develop your network of community-based resources, utilize drug and alcohol treatment. Identify what the particular barrier is for your patient, come up with a care plan for them and then try to elicit partners and bringing them back into care.
So I’m going to pass this on to Dr. Willard. Thank you for your attention.
Dr. Sue Willard:
Hi. And thank you so much. So I’m going to take us all home and really talk about strategies, some strategies that we’ve been able to use to retain individuals in HIV care.
I have been practicing for close to 30 years as an advanced practice nurse and I will tell you that many of the patients that I started with in 1990 are still with us. So we’re doing something right and they’re still engaged in care.
Let me see if I can page down here. Okay so first one I always tell my students as well as other new providers coming into the practice is that your first goal is to make sure that patient returns.
So be able to establish a relationship with the patient I think is the number one thing. And several studies have shown that over time.
Understand the narrative of the patient. Understand the narrative of the providers where they’re coming from and also the context.
Where are you practicing? What is it like? What did it - what are the barriers that patients need to go through understanding what it means for a patient to come into care?
We very often see they may be tested out in the community. And I have found often that the hospitals and the clinics that we refer patients to is a barrier to care because they’re afraid of what’s going to happen.
So taking that step either with community-based organizations or even put in a provider from your practice in one year referral agencies so to provide that linkage, you know, to decrease the fear I have found to be really helpful.
And the second thing to do is understand what that patient needs to go through. Call your practice. See what it’s like to be able to get an appointment.
How long was this patient placed on hold? How long does it take to be able to get an appointment? Understand the system that you’re working in.
When the patient shows up who do they see first is? Is it the guard at the door? Is it the front office person? And how do they relate to the patient? How does the patient feel welcomed into the practice?
So it’s really important to know that, you know, if you’re going to be drawing blood are you sending them across the street because patients will not make it across the street.
If you’re referring them off for their GYN services into another practice how will they get there? How - and we need to make sure that to decrease the amount of barriers that patients have to be able to get the services.
Understanding ourselves, don’t assume that you know how to take care of every patient who comes through your door. Know what your skills are and know that there may be somebody else in your practice and -- often there is -- who will be able to help you.
This is truly an inter-professional interdisciplinary method of practice. It’s very important that we understand that and having this team approach that while you may not as a provider be able to help that patient understand the importance of what’s going on, your front office staff may be able to finally get the message through to them or the medical assistant.
So making sure that it’s not a top-down or a bottom-up operation but that is everyone is on the same level working as a team to be able to provide services.
One of the speakers previously talked about the importance of a pharmacist. A pharmacist is so key as far as adherence, education and providing that extra information.
Oftentimes the providers only have maybe 15, 20 minutes unfortunately to be able to see a patient. But that’s all you need to bring other members of the team so the patient understands what is being asked of them.
And some of the key populations, understanding your population that, you know, if someone is dependent upon drugs whether its heroine or crack cocaine or whatever meet them where they’re at.
I remember one young woman came to me. She was a very high heroin user and they said you want me to take medication?
And I looked at her and I said, “I want you to be in care.” “You don’t want me to take meds?” I said, “I want you to be in care.” “We need to do what you need to do.”
Well that was about 15 years later. Now she is drug-free. She is in care. She’s had an undetectable viral load. She’s married and she has three children all HIV-negative.
So really keeping, you know, keeping, finding folks where they are and where they want to be treated is the most important thing.
Not everybody can take medications the first time that they come. The same way if you had a cancer everyone that may not be wanting to go on radiation or go willing so trying to understand what their philosophy is with this disease and making sure they understand the (chronicity) of a disease.
If you’re taking care of special minorities just understand their needs, understand the cultural context of the laws of the patients that you have.
Women are - is a very specific area when they’re pregnant. Also the OB doctors will take care of them for approximately seven months if they’re lucky, the patient comes in and out.
But then they need lifelong care. We may have prevented the transmission, but what do we need to do to engage that woman and to keep her in care?
So looking at your healthcare system, we added up going into an OB clinic and still that program is still going on to this day where we provide HIV consultations with the OB clinic.
And that woman comes back all the time. And then we can link them closer to come back into the HIV center afterwards and they already have established a very strong relationship with their provider.
Looking at one-stop shopping models, working with the family planning offices within your practice areas. If you’re a federally qualified health center making sure that the patients can get their primary care services as - and their hypertension diabetes and their GYN services all in the same day.
The system may need to be worked out but we need to understand how often - what it would be like, like if we as a healthcare provider, would we sit and come back to see somebody or see an office three or four times a month just to get services for their health? Most people can’t do that.
I sat with a group of clinicians and we traced the life of a woman who was pregnant and then she had a baby and what that baby needed for services afterwards as well as for herself.
And we actually drew a map where that patient needed to go around that health care facility. And then I turned around to the providers I said, “Can anybody in this room do this?”
And they all looked at me and said, “No, we get it.” “We understand.” “We need to change our system,” so visualizing that for folks.
And making sure that you’re open to where again where the patient’s needs are. If they want to have preconception counseling and prep know what that means, talk to your patients all about sex, talk to your patients about what are their desires for pregnancy down the road.
So I’m going to sort of end with that. Again it’s the base practice which is the most important thing and the relationship with the healthcare provider no matter who their healthcare provider is. Someone needs to have a relationship for these patients.
Think of having an HIV test as a traumatic event. And keeping those patients engaged in care helping them overcome their fears we will have a healthier population and prevent this disease from going on.
Thank you Drs. McCray, Felzien, McGowan and Willard for providing our COCA audience with such a wealth of information. We will now open up the lines for the question and answer session. And also remember you can submit questions through the Webinar system at any time. Operator?
Thank you. We will now begin the question and answer session. If you like to ask a question please press Star 1. Please ensure your phone is unmuted and clearly record your name when prompted. To withdraw your question please press Star 2. One moment please while we wait for the first question or comment. And again any questions or comments please press Star 1 and record your name. Again please press Star 1.
Operator while we’re waiting for the question to queue up, we do have a couple that have come through the Webinar system.
The first one is how can the pharmacy or ER be a part of the solution in decreasing barriers to care?
Dr. Joseph McGowan:
Dr. Eugene McCray:
Dr. McGowan would you - this is Dr. McCray would you like to take a stab in answering that one?
Dr. Joseph McGowan:
Oh sure absolutely, thank you. So certainly the pharmacy can play a major role in being a partner. And I think a couple of us have touched on that.
One way is that they can help facilitate access to treatment so home delivery medicine has been shown to be a benefit.
You know, also providing prepackaged medications or pillboxes which might facilitate taking medication, you know, on-time or on schedule.
Again we work with a PharmD who also helps patients with electronic reminders. Everybody essentially has a smart phone now. You can set the alarm on that phone to go off to remind the person that it’s time to take their medication.
Also calls for when it’s time for refills. You know, if the pharmacy calls your patient to say it’s time for your refill and they say oh, I’ve got plenty of pills, you know, that pharmacists if they’re a partner with us they would call us and tell us hey we tried to call for a refill but your patient said they had plenty. That should be a red flag, you, that there could be an adherence issue. So there are a lot of ways that the pharmacist can be a partner.
In the emergency room, you know, if again we have an event notification system which is really important. If our patient shows up in the ER we certainly want to be notified.
And also to have a communication, you know, that there’s no interruption of antiviral therapy or, you know, if there’s an issue what that they’re in the ER related to a side effect or toxicity of therapy we need to get that bidirectional feedback.
So it’s important if you have your patient go to the ER they should tell the doctor they call us or again we have an automatic event notification in the region.
That would be great to sort of set that up that way you can transition them back to care without any gap.
Dr. Gregory Felzien:
This is Dr. Felzien and I’ll add to that. In the state of Georgia recently we did have a law passed like they did in New York where we do have health information exchange that does allow individuals who access the emergency room to help link these individuals back to care.
But the other aspect is making sure that the emergency rooms are not just refilling needed medications as we see a lot when clients present they’re just there for medication refills but making sure that they’re linking them back to care. We’ve had clients out of care for over a year. We took them off of a certain medication.
The emergency room just refilled it and unfortunately they built up more resistance to other HIV medications making it (treatment) more and more difficult.
So that linkage to care through the emergency room is such an important aspect to retaining and offering good care to these to the population.
Dr. Sue Willard:
Now this is Sue. I would love to also echo about the pharmacist. I have found that I can’t work without a pharmacist. The way that they speak to the patients and provide that adherence counseling and that connection is very, very important. And it’s again it has increased the health outcomes in programs that have them.
Thank you. The next question is we are an infectious disease practice. We know that our women need specialized services including gynecological care. How can we make sure that this happens?
Dr. Eugene McCray:
This is Dr. McCray again. Dr. Willard would you mind taking a stab at that one?
Dr. Sue Willard:
Sure. For one it’s good to find a good gynecologist that is within the system whatever health system that you’re working with.
So a few things that we have done is that we would look for bringing in a GYN doctor in one day a week to do certainly through colposcopies but also ensure that there’s a nurse practitioner in practice who is trained more in primary care than versus infectious disease. And they can do a lot of the primary care services as well.
And know that also there’s federal dollars and federal programming for family planning services. And talking to your local family planning programs to see if you can become a partner and a member with them and they can put in services in once a week into your programs.
And usually they’re really open and willing to collaborate because the women do need the services. We find that women are dying of GYN and cervical cancer. So it’s important that we can identify and do this later.
And that’s why I was going back to the fact that, you know, knowing our own limitations many folks who are providing HIV care they’re trained to, you know, really just do the bug, just do the virus or be able to treat that and they’re excellent at that.
And so they may not be focused to be able to do GYN care. So find someone else to be able to come in to the practice to do that is usually that works.
Another way this happened is that if you were in a public health center and they had an HIV clinic that ran twice a week but their family planning services and their GYN services ran five days a week. And we just opened up a slot so that if a woman comes into the HIV services the family planning services always had an open slot available.
You just had to make - and once people understand the importance of the services they usually work very well with you.
Dr. Gregory Felzien:
This is Dr. Felzien. I’ll just add because I do a lot of rural care. And when I came to rural Georgia the majority of the women were being referred two, three, four hours away to get that specialty care.
So what we did is we reached out to the hospitals and to all of the surrounding OB GYNs and basically had a mini HIV camp directed towards women’s health.
And not all the OB/GYN groups were wanting to step forward and treat but we did find several that wanted to treat this population, understood that they needed to stay local and then making sure the hospitals had the appropriate, you know, IV AZT available and that we had follow-up for these individuals.
So where within a year we went from having no system to having a very good system where these women were getting the care and not being lost to care because they had to travel so far to get that specialty treatment.
Thank you. Operator do we have any questions on the phone line?
I show no questions.
Okay. We have one more question. And that question is what should the optimal follow-up interval be to consider a person with HIV to be adequately retained in care?
Dr. Sue Willard:
That is the $64,000 question. You know, we can say we want to have a patient come back every three months. We can say that we need to have a patient come back every day or every week.
Each patient needs to be assessed. And that return visit should be set in a partnership with the healthcare provider and with the patient.
Oftentimes when I have a patient come in newly diagnosed, I will bring them back in sometimes in two days or in another week trying to get them to understand what is the information that we’re providing?
It’s a tremendous amount of information that we give our patients. And often they don’t have a community of support around them when they go back home with that information.
So I think we need to assess the patient and find out what their supports are, find out what their needs are in the healthcare system.
If they are working five days a week maybe it’s just a telephone call that we need to be able to touch base.
Again it’s building the relationship with the healthcare provider and building a relationship with that patient and making sure that they come back. It’s a mutual decision.
Dr. Joseph McGowan:
This is Dr. McGowan too and I agree 100%. I mean sometimes as we talked about you get focused on “well I need a CD4 count in the first half of the year and one in the second half and the viral load once a year.” And you can go to the DHHS guidelines and get, you know, the strategy of how often you have to do viral loads and T cells.
But sometimes you need to have a person back for things that are not related to just measuring the viral loads and the CD4.
There are life events that go on, obviously risk reduction and such, people coming in with STDs so or substance use issues, mental health issues. And they may require more frequent visits just to address those issues and aside from just measuring viral loads.
Thank you. Operator do we have any last-minute questions?
I show no questions.
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