Good afternoon. My name is (Christy) and I will be your conference operator today.
At this time I would like to welcome everyone to the ACTS HIV Counseling and Testing Just Got A Lot Easier conference call.
All lines have been placed on mute to prevent any background noise. After the speakers' remarks there will be a question and answer session. If you would like to ask a question during this time, simply press star then the number 1 on your telephone keypad. If you would like to withdraw your question, press the pound key.
I would now like to introduce Andrea Norberg, Director of the AETC National Resource Center.
Ms. Norberg, you may begin your conference.
Hello everyone and welcome to our training exchange. This is extremely exciting as over 200 people have registered for this event.
I think the interest in ACTS illustrates the timeliness of efforts to improve HIV case finding and linkages to care through more efficient approaches to screening.
I'd like to thank our presenters today, Dr. Donna Futterman and Stephen Stafford for the incredible amount of work they have put into the HIV screening approach they will be sharing today.
Their work on ACTS has been a multi-year program that has been supported by the New York/New Jersey region of the AIDS Education and Training Center.
Before I turn it over to them, I'd like to share a little bit about both Donna and Stephen with you.
Dr. Donna Futterman is a professor of clinical pediatrics at the Albert Einstein College of Medicine and the director of the Adolescent AIDS Program, Children's Hospital at Montefiore in the Bronx, New York.
Her program is one of the nation's leading programs, providing comprehensive care for HIV positive and at-risk youth and was the learning lab that developed the ACTS system we will be learning about today.
Dr. Futterman has published more than 50 articles and chapters on the care of HIV positive and at-risk youth and a book entitled, "Lesbian and Gay Youth - Care and Counseling." And she lectures widely throughout the country and internationally.
She is recognized as a national leader on HIV, (chairing) the NIH-funded Adolescent Medicine HIV/AIDS Research Network and the Adolescent Committee of the Pediatric AIDS Clinical Trials Group.
She has also served on the HRSA/CDC AIDS Advisory Council and the Committee on Pediatric AIDS of the American Academy of Pediatrics.
This year, she was named by the New York Daily News as one of ten heroes in HIV for her work with an on behalf of adolescents.
Mr. Stephen Stafford over the past 20 years has made a successful career of putting commercial marketing and public relations tactics to work for some of our nation's most important healthcare issues.
Working in government, corporate, and not for profit settings, he's designed and managed social and marketing campaigns, developed scores of electronic and print materials, designed and managed CME programs, and generated media buzz to promote a range of medical and wellness initiatives, including efforts to prevent smoking, domestic violence, childhood obesity, and HIV/AIDS, the care issue he is most passionate about.
For almost a decade, Mr. Stafford and Dr. Futterman have collaborated on several notable HIV/AIDS projects, both here and abroad. And he has been a partner in the development of the - of ACTS since its inception.
At this time, I'd like to turn over the presentation to Dr. Donna Futterman and Mr. Stephen Stafford.
Thank you all.
Thank you, Andrea.
This is Donna.
And Stephen Stafford.
And we are very excited to be on the call today with all of you. And I think the turnout today represents as Andrea just said the fact that counseling and testing is on all of our thoughts and minds right now.
For this call, we've had over 200 participants registered from 35 states and the District of Columbia and Puerto Rico, as well as from India and Switzerland. All 11 AETC regions have been represented here.
I would like to offer a special welcome to a couple of key people on the call. First of all, Lynn Wegman, who is the head of AETC for the HRSA/HIV/AIDS Bureau. Also to welcome Donna Higgins from the World Health Organization HIV Counseling and Testing Program, and Dr. Marsha Martin, who is head of HIV/AIDS for the District of Columbia.
I also want to thank both Andrea and Rianna from - I'm sorry, Rianna Stefanakis and Nicolé Mandel from the AETC NRC, and Tanya Stevenson from the New York/New Jersey AETC, who supported our work through the years.
I want to remind everyone that the slide set that we're going to be using for the presentation is available on the web. If you go now, if you don't have it yet,
. At the end of the registration page, you can click on the on the slide set.
And also there are a couple of key materials that we'll be discussing a little later in the presentation, in particular Part II of the HIV manual has all of the key tools that we will be discussing later on in the call. We will reference them as we go through the call.
So our concept here, HIV testing just got a lot easier, is based on work we've been doing with a system to simplify counseling and testing. Today's agenda, which is Slide 2, in the program today, which we will be presenting for a little over an hour, and then we hope we have a significant time for questions and discussion after that.
We're going to be starting with what we're calling the tipping point for routine testing. It's when an idea takes off. And we certainly feel that the public health and care community have now come together to recognize that it is time for routine testing. And so the first part of the talk will be the rationale for that and the reasons why.
The second is what is the basis for what should be in HIV counseling and testing. As you now, there's been a great debate between supporters of evolution versus the supporters of intelligent design. But we think where we have all evolved with HIV testing is an interaction of those two elements.
We're then going to present some results from a pilot we've been conducting over the past two years of ACTS in action here in the Bronx, one of the epicenters of the epidemic.
And then we're going to take you through the actual tools of ACTS. And what our perspective is, is that the ACTS system has a couple of things that really make it very useful right now.
First of all, it can be used with any way of doing testing, whether your site is doing rapid and/or traditional testing, if your site or your state or your locality is offering written or oral consent, and if you're pursuing testing on a targeted risk basis or if you're as we - many of us will be moving towards a more routine approach.
The ACTS system we believe is a scaffold on which local versions can be hung very easily. And we've designed it so the adaptation to your local areas is very easy.
Right after the description of the tools, we will have the questions then, so that it'll be time for a discussion.
What we would like to do in the questions and answers is first talk about using ACTS and the logistics and the practice implications of ACTS, and then second to have a larger discussion about the philosophy and larger public health questions of moving towards more routine testing.
And then finally if time permits we will do two short role plays about using ACTS in action.
This call will be a combination of our presenting a rationale and the use - the practical use of these materials, and train the trainer. We believe both what we're presenting today and the materials on the web are available and can be used by providers around the country to do their own planning and training. This is meant to be a system that can be used on its own.
Of course, we're available by email for follow-up on any issues that arise, but listen to this with two sets of ears. One is our presentation to you, but also the question will be how would you use this to train locally.
The next, Slide 3, we believe there is a great deal of unfinished business in our work with HIV and AIDS. AIDS is now officially the worst epidemic in human history.
Here in the United States, we have over 40,000 new cases a year. And it's estimated that among those, 25% to 50% are among youth between the ages of 15 and 24.
When you look at that math, 40,000 new cases a year, that comes to every hour of every day at least two people are being infected newly in the United States, which is pretty shocking as we approach the 25th anniversary, that this level of new infection not only exists now, but basically has been there for the last ten years.
Based on this, the CDC has estimated that one in four people with HIV, which comes to about 300,000 people, 250,000 to 300,000 people who are HIV positive currently in the United States still don't know they're infected. That is truly a shocking number. And not only is it a shocking number, but it is something we can do something about.
We may not have a cure for HIV and AIDS. We - the idea of a successful vaccine may also be many years in the future. But finding and linking people to care is something we can accomplish with our current resources.
The number one in four is shocking enough, but that number may be even higher among youth. The only nationally representative study of young gay men who were sampled as they were going out to party venues in six different cities found that overall 80% of these young gay men who were HIV positive had no idea they were infected. So the 1/4 may be true for adults, but for adolescents this number may be even higher.
And the other sad thing is that almost half, 41% of those diagnosed HIV positive were diagnosed within a - with AIDS within one year of their first positive test.
We know it takes an average of ten years to develop AIDS without treatment. And so the fact is that 40% of people are going up to a decade living with not only an infection that's damaging their health, but is something that they can continue transmitting to others because they're not aware they're infected.
And this is both a personal crisis for those people as well as a major public health challenge for all of us.
Slide 4, we really want to assert that it is time to take care of this business. Case finding has not kept up with treatment advances. In the world of HIV and AIDS, anyone who's been working in it for ten years knows that everything has changed. We went from being able to just prevent opportunistic infections to now treating HIV, giving people many, many more years of life. And that has evolved.
But we're still using the exact same models of counseling and testing that were instituted as soon as we had an antibody test. And certainly as we'll talk later, some of the premises for how we went about doing counseling and testing no longer applies.
So the background of why we designed and what we hope for in this system has not been proven, has not delivered what we hoped it would, and it's really time to shift our thinking on this dramatically.
Another thing that people often say is that patients would be afraid of this and they - their first reaction is to view patients as the barrier to testing. But in fact multiple studies and most clinical experience has shown that patients overwhelmingly accept HIV testing when a provider recommends it.
And in fact, many patients assume they've been tested. The notion that there is one specific medical condition that you just draw blood for and that needs a separate consent is not something that the majority of patients outside of the AIDS world really understands.
And in fact, you know, when patients are offered the test or when they've been asked if they've been tested, we've heard lots of stories of people saying (oh), you did that already. Well, there's no evidence. Well, you took blood, why wouldn't you've done it?
So I think there's - the patients and the people might in fact be moving a little faster than we've been moving.
One of the things that we fell really was both a missed opportunity and an important model for us was the mobilization for prenatal testing. The missed opportunity is when we went forward with a program to offer testing routinely to HIV positive pregnant women, there were many concerns that were raised at the time about taking away people's rights and the problems with implementing it.
Luckily those concerns were not borne out. Women appreciated finding out something about both their health as well as the health, the potential health of their child. And it did not create a crisis.
But what we learned is going from a medical finding that knowing you were positive and taking medicines to prevent maternal child transmissions to implementing a routine system of testing in the prenatal setting is something that took many years and a lot of money and a lot of targeted efforts to change.
And that is the type of mobilization that it's going to take. We have had good recommendations for routinizing expanding counseling and testing at both the national and local levels for a number of years, but in order to implement it, which I think is what the interest on this call is all about, it's going to take something on the level of what happened with prenatal testing. That involved changing laws and changing practice, as well as promoting this idea to patients and to clinicians.
And I think that that is the scale we're doing it. ACTS is a tool that we feel can help people move into this more massive approach and mass approach to HIV counseling and testing.
Just to review, and I think probably everyone here could give elements of this talk, but what are the benefits of routine testing? Why is it something that we all have come to believe in, or certainly more routine testing.
The first is its prevention impact. Routine testing, people knowing their status reduces HIV transmission. From a behavioral point of view, HIV positive people who know their status have been demonstrated to reduce their high-risk sex practices by about 50%.
It also, if you're in treatment and lowering your viral load, that also is a biological way to reduce transmission. And you can only get treatment if you know your status.
We also know that more than half of transmission currently seems to be taking place and being - HIV being passed on by people who don't know their status. And that's by some estimates where we can give you the sources.
As a clinician though, I have always felt strongly about the other part of routine testing, which is its health benefits. There is no question that knowing your status, getting into treatment prolongs life.
HIV treatment alone can increase survival by many years and also improve the quality of life. Finding out by getting an opportunistic infection is definitely counterproductive for the person. It makes them sicker, it makes it harder for their body to fight HIV. And so there's a very compelling health reason to get tested.
We also know that patients can take a while to get acclimated to their disease. Just because they find out doesn't mean they're going to do something about it. And it's better for them to have that time before they absolutely need treatment than to arrive at our doorstep in desperate need of starting ARV or HRT right away.
Another study is estimated that routine screening, which has recently been demonstrated as cost effective, would result overall in an increase in CD4 counts at presentation from the current 154 average up to over 200 or about 210 cells. And that would be significant because it starts to shift people out of the immediate risk of getting opportunistic infections.
The next slide describes some of the best practice recommendations that have been coming from our health departments.
In 2003, the CDC issued "Advancing HIV Prevention - New Strategies for a Changing Epidemic." At that time, they called for routine testing in communities with greater than 1% HIV prevalence.
In 2005, a series of articles demonstrated that routine testing is cost effective in settings with a greater than 0.05, so just half of that, 0.05% HIV prevalence. And routine testing in that setting is one-time testing and then for selected populations repeat annual testing.
Right now, on multiple levels, both CDC and HRSA are working towards routine testing by streamlining and - the counseling and consent process. And some people, some health departments around the country are even moving towards an almost opt-out point of view with eliminating the specific consent requirement.
The health commissioner of New York City has called for changing the laws to allow for a verbal consent for HIV to be documented in the charts. And recently San Francisco also moved away from the specific written consent.
And I think it is that kind (of) personally that's not what the call is about, are we supporting a change in consent. I think that that's an important and leading way forward for all of us right now.
But what we're talking about today is a system that enables us to work in that environment, and also in what is for sure going to be a transition environment.
The leadership of CDC, HRSA, and local health departments, even if the laws were changed overnight, there is no way that practice would change overnight. We still will have a huge job to train, to involve, to motivate providers to do this.
And we think ACTS really enables providers to have a scaffold on which to approach the issue of HIV counseling and testing. So we think that ACTS will make provider delivered routine testing feasible in various care settings and approaches.
Finally I just want to say on this slide that one of the currently unsolved problems of upping routine testing and the goal of identifying the 1/3 of people who don't know will present a huge challenge to our healthcare system.
We - many of us get money from the Ryan White CARE Act and our local health departments to do this care. And to even think of increasing our caseloads by 1/3 will put a lot of stress on our system, will necessitate an increase in resources. We certainly don't want to be in the place of many Third World countries where treatment is rationed like it is currently in some states that have waiting lists for ADAP.
But I don't think that not having that available is a reason not to help people learn their status. I think the new numbers of - there's no way we're going to get more services and more resources on the prayer or the hope that we'll get more people into care.
I think it's only when we have those people in care and the challenges to the systems arise that we will have to continue our advocacy to get adequate services and to join with many other people with serious health conditions in this country who have to advocate for changes in our healthcare system.
So I still that despite the fact that we are working in an imperfect healthcare environment that the alternative of people not knowing their status is not something that any of us should feel comfortable with or say well, we'll take care of that after we've developed a care system. I don't think we can afford to do that, nor would I want to be the patient who didn't know because the care wasn't available.
Next slide, number 7, just to review, we - like many things in our lives, history tremendously impacts how decisions are made And HIV and the whole treatment approach has certainly been an example for us of history in action.
In 1986, a year after the first test was approved, the environment was one in which we had no effective treatment, and discrimination was quite stark, dramatic, and literal against those most infected - MSMs, drug users, immigrants, and sex workers were targeted with proposals like tattooing, were thrown out of their homes. And the policy in many ways reflected that - no treatment, heavy discrimination.
I just heard - was in a conversation with one of the three authors of the New York testing law, which is one of the strictest in the country. Her name is (Nancy Duglish). She's a lawyer and an ethicist.
And she's just recently has said that when they designed the counseling and testing law in New York, they explicitly were seeking to discourage people from getting the test. They felt that it was something people needed protection against.
And there's no question but that confidentiality issues are there for HIV, they're there throughout our healthcare system. But much has changed in HIV. We're now in an environment where there are many effective treatments. And it's almost to the point of potential malpractice to have seen a patient for pneumonia or other conditions and not offer them a basic health screen.
HIV discrimination and stigma certainly continue, but we have to also recognize progress - progress in laws, progress in advocacy, and progress in the community of people with HIV really demonstrating that at - that discrimination is something that can and must be fought.
And it's pretty interesting that some of the major organizations of people living with HIV and AIDS have been the leading advocates for more people to know their status.
And in fact, every year National Testing Day is sponsored by the leading national organization, National Association of People with AIDS. So that's a crucial issue that on this question people with AIDS have certainly been advocates for their (decision) for others learning their status.
But we are in an environment 20 years later when counseling and testing regulations remain largely unchanged and thus serve to separate counseling and testing from routine medical care.
Literally the doctors, nurses who do the care for people and do all their other tests often do not do the testing for HIV. You know, they have to be sent elsewhere to a counseling and testing person who may or may not exist and who may or may not have the time to do this.
And in some ways, for me personally and I think for many of us, when we created the HIV counseling and testing model, we had a great hope that the pre-test counseling was an effective time to do risk reduction and prevention work. The belief was that it was a teachable moment, that when people were vulnerable and considering their HIV status, it was the perfect time to help them, motivate them to change their behavior.
Sadly though, the research has not backed that up. And although certain very intensive two-session programs of risk reduction have helped some people, the dream and the goal for prevention in HIV counseling and testing has not been realized.
And here I have to, you know, like many of us I think on the call make a personal mea culpa, that this framework that we created did not do what it was supposed to do. And therefore myself, many others are really reexamining what we created and moving forward.
And in some way I think that's part of what keeps many of us working in HIV so long - the need to constantly reevaluate and evaluate what are the ethical challenges and ways of moving forward in this work. We can't be comfortable thinking that what we (decided anew) many years ago is something that we must to continue to stay with.
So getting to the provider level, starting in the early 2000s, we did a - qualitative research with healthcare providers here in the Bronx, an epicenter of the infection, to learn what they described as their motivators and barriers to infect - to - that were impacting HIV testing among adolescents. This is Slide 8.
We commissioned this study, (hired) a professional qualitative research firm. And they interviewed 55 Bronx-based providers and administrators. And it was the key finding from this study that informed how we rethought and reconfigured HIV counseling and testing.
Overall, Slide 9, we - the headline of the ARS study findings was from providers saying they had not enough time, not enough experience, and they were not aware of the risk of their patients.
They reported to us that the conventional testing, which is true, was time intensive. At that time it was still 30 to 45 minutes. The providers who did counseling and testing would sort of sheepishly shrug their shoulders and say (oh), it only takes me five or ten minutes. And that's the ones who did it.
It was specialized. They felt that they had to go for special training, the training could be two days to a week. It was not something that they incorporated into their healthcare.
And in some ways that made it be stigmatized. They would single out someone who should get testing, do - it was based on their risk assessment. And because of all this, it was also separated from routine care.
Turning to Slide 10, all this for us has added up to saying it's time for a paradigm shift. We want to move counseling and testing from being the huge mountain and obstacle that it currently is in the world of counseling and testing to a much lower path that will - where the mountain becomes HIV care and the prevention needs of people who either don't have HIV or who have it.
This is such a huge obstacle that many providers and patients prefer to just ignore it altogether. And what we instead are proposing is that we lower this obstacle and make counseling and testing less the centerpiece of everything.
Essentially this would mean in Slide 11 less referring and more screening.
The essence of what we're proposing has been taken by providers as empowering them to bring testing back into their setting. It enables providers, everyone on this call and those you work with, that you can solve a solvable problem of finding these 300,000 unidentified positive patients.
You can provide them with effective links - with links to effective prevention counseling. You can engage HIV positive patients into early care. And all of the providers are an essential player in the team that will meet our public health HIV/AIDS goals.
So what is this, what is ACTS? Now we are shifting into a description of ACTS and the tools it provides.
First of all - we're now on Slide 12.
Let me tell you some quick things about ACTS. ACTS is both concise and comprehensive. And it's a system that makes provider-delivered HIV testing feasible in clinical care settings.
It can also be used in outreach, but many outreach programs do want to incorporate a more comprehensive prevention message when you're going out into communities. This was designed primarily for use in healthcare settings.
It meets - ACTS has both instructions and tools for making operational and clinical practice change. And as you'll hear, the logistics is one of the biggest issues.
It currently meets CDC and Department of Health testing requirements. It was designed in New York, where we have a very strict system. But it's easily adapted to any local testing requirement.
It brings down the 45-minute current testing to five minutes. And if the consent issues change, it can be even less than that. And this - thus we feel it allows for a better allocation of counseling resources.
We're in an environment of shrinking resources and we feel that many of the counselors and testers will and need to be used for linkages to care and prevention with positives, which is being recognized more and more as a public health - as a key public health strategy.
Slide 13 - after we designed the ACTS system, we targeted a number - a specific health community in a randomized control trial. Essentially we went to ten Bronx clinics, half of whom were randomized to receive ACTS beginning in late 2004. So we had five ACTS sites and five control sites. And these were community health centers, which are certainly a key place to do case finding.
We - in addition to these sites being in our neighborhood and in an HIV epicenter, they also had a data system that we could access counseling - that we could access testing rates. And we wanted to see what were the percentage of eligible patients who got HIV testing in these clinics over time.
In each clinic, we took out all of the maternity patients because we found that over 90% of them were already being tested and we didn't want to skew the data towards larger maternity sites.
So our results were actually quite significant. On Slide 14, you see the control sites. And everyone started testing less than 10% of their eligibles. And you'll see that baseline 2003, the sites were pretty comparable. Two thousand and four we started our training. But by 2005, all of the sites had been trained, and we doubled our testing rates in our ACTS clinics.
And this result is significant compared to the control clinics and also compared to the baseline clinics. But - and this was very exciting when we saw our significant results.
In order to do this, we went into each clinic, we met with staff, and we'll go over this. It was a lot of work. But the sad thing is even though we doubled the testing rates, and this is in line with many clinical-based interventions, to get this much of an increase is a pretty big deal. And practice change takes a long time.
But even with all of this effort and even putting it in context of everything else, we still only got to about 24% of the people in these clinics being tested. And none of us felt that was good enough. Sure, in five years everyone in those clinics would get tested at this rate. But that's not the kind of results we are all going to need to make this a reality.
So I think these results were both exciting and validated our tools. But they also challenged us to really think in the way the health departments do about the need to do this on a much more compelling level than clinic by clinic. And so I think that's the change that we're all going to be working towards.
So in doing this trial and in the work you will be doing, these are the steps that we think and have - we've experienced as being crucial.
The - and we're on Slide 15.
The first is - so it's elements of the ACTS system.
The first is a baseline meeting with the HIV coordinator, clinic administrator, and medical director to develop an implementation plan. This is really crucial. We believe that at least half of the work is in setting forth an implementation and logistics plan.
Then we go in and train providers in an academic detailing session. And we're training clinic staff on literally using ACTS. And we have the tools to train them for how to do it, the manual and the toolkit.
So what is it that we are doing when we have that first meeting? The first thing - and this is the next slide, 16, laying the foundation.
The first is at that meeting, there really are two parts. The first is to address the philosophical issues they have about counseling and testing, and the second is to address logistical barriers.
The philosophical barriers, many clinics' leaders will be skeptical about the patients' HIV risk. They will view other health problems as a priority, and they will not be concerned about the loss of prevention.
All of those issues are real, and I think what we're presenting is something that balances them out, that the skepticism about patients' risk, it's true, it's 1%, that means less than 1 in 100 tests are going to be positive. It is hard to sustain. But this is our health department recommendation.
It's true other problems are a priority, but let's decrease the barriers to this so it can be incorporated with the other problems. And not only is it a personal problem, but it's a huge prevention problem.
And the loss of prevention I think we address by saying that unfortunately that type of prevention has not demonstrated its efficacy enough to make it be a barrier to routine counseling and testing.
The second part is to really look at logistical barriers - which staff will test, what are the documentation and consent processes that are needed, how will the patients flow and get their results, and billing issues.
We have codified that onto the site preparation checklist, which is in section 2 of the manual. Actually it's in section 2 on the web site, Part II on the web site and Page 24 in the manual.
Preparing your center, personnel issues, who we're going to provide counseling and testing and do they need any additional training by your local state law; patient flow, which visits is testing going to be offered, well, sick, contraception, STD. Many clinics originally are going to say we can't do it on sick visits, but in reality patients who don't drop - come routinely but drop in for health problems are more likely to be positive than the patients who come every year for their annual checkup.
Who will be offered testing, and is your clinic going to use a pre-screen for risk. We have moved away from risk-based testing. The tools are there if you or your clinic want to use them.
But, you know, when someone gets a lipid test, we don't grill them on their eating habits. We don't ask them how many hamburgers they ate yesterday. And I think their test for HIV is either going to be positive or negative and they can have the lowest risk and have run into this and a very high risk and not be positive. So I think the test stands alone.
Then documentation and administration, a procedure for specimen flow, documentation, reimbursement and billing, and how you documented counseling and testing in the chart.
And finally what is your process for giving test results, will it be routine or rapid, how will you deliver positive results and how can results be given, either in person or on the phone.
Slide 18, after you have answered these questions with the clinic leadership, then you go in and you do your staff training. This is led by providers following the academic detailing model where you go in with a key influencer. We found that catering it was a crucial element of our success in attendance, and the need for follow-up training.
We also found that it was crucial to provide ongoing support via regular meetings with staff to problem solve and an ongoing data report back to the clinic.
Now I'm going to turn it over to Stephen, who is going to be reviewing in depth some of the key ACTS materials.
At this point, if folks have either downloaded some of the materials and printed them out or if you just want to go onto our web site and have them available online on your screens, it would be good to be able to refer to those as I talk about the different tools of ACTS.
Slide 19, based on the pharmaceutical industry's successful academic detailing campaigns, we really set out to develop a whole suite of materials, collateral materials that were written and designed to make ACTS easy to understand and easy to enact in clinical settings.
As Donna just described, an important component of implementing ACTS involved meetings and trainings with key administrative and clinical staff. But as a supplement to these meetings, the materials are really key.
And we found that with the tools, even when we leave the office, when we are away and not able to respond immediately to people's questions, they've found these materials to be a great bridge or to fill the gap until we can get there and provide technical assistance. And they really stand on their own to answer questions and help people implement more routine counseling and testing in whichever fashion the clinic decides is best for them.
In the next few minutes, I'm going to go over each of the materials that we developed and describe how they're used. But if you look at this slide, Slide number 19, it provides a good overview of the tools for our two audiences.
The top row shows the materials that we developed for clinic staff, and then the bottom row are the materials for patients.
I'd like to point out too at the start that a lot of our materials mention specific information about New York laws and regulations since that's where ACTS was developed and that's where we piloted it.
We recognize that most of you on the call today are from other states. And we've put on our web site a downloadable resource. It's a great report that was written and produced by the National HIV/AIDS Clinicians' Consultation Center at UCSF. It's got state-by-state regulations, laws, some examples of forms. So if any of you don't already know your regulations and don't have access to that online through your state department of health, that's a really good resource.
Let's go to the next slide, Slide 20.
Starting with the materials that we developed for clinicians and clinic staff, the ACTS manual really is your rapid counseling encyclopedia and users guide all rolled into one. I mean, we wrote and designed the manual to be comprehensive in scope, but also to be practical.
So what you won't find here is a telephone book-sized tome on (rapid) counseling and testing, but something that's really distilled the key facts about rapid counseling and testing and ACTS into an easy-to-use three-part manual.
In part 1, we really concisely organized the essential tools and information needed to deliver ACTS. In less than 30 minutes, you can review a short rationale for routine provider administered counseling and testing, digest talking points for each of the four steps of ACTS, and understand how and when to use forms for consent and risk assessment if you choose to do that, as Donna just explained.
This section of the manual is really ideal as a refresher for staff who've been trained on ACTS through the academic detailing that we would go and provide or that you would to and provide as trainers. And it's a great tutorial for staff along with the slides, new staff that are unfamiliar with the ACTS system.
And I wanted to say too that right now the presentation that you've got downloaded from our web site is a PDF form. But later in the week, we'll place a PowerPoint slide set there, which you folks can download and then use in the future if you want to, to train your own sites and as train the trainers for other people who might be interested in implementing ACTS.
Moving on to Part II of the manual, we present there a lot more detailed information on really important topics related to rapid counseling and testing and the ACTS system.
As concisely as possible, we offer advice and opinions about delivering HIV results, including phone results and becoming more comfortable delivering positive results.
We explain the range of HIV testing methods that are available to most clinics in the US. We give practical advise to providers who serve special populations such as adolescents, and in particular gay and lesbian adolescents.
And this section also includes an overview of HIV prevention essentials, which can be used by clinicians to craft their counseling or as a framework for social workers and other providers who might be tapped to deliver more intense prevention counseling to patients that are identified at high risk.
Slide 21, the next slide, the ACTS pocket guide. And the pocket guide is really even a more concise user's guide. It fits into a lab jacket and it's laminated for durability.
So the pocket guide resembles a lot of the drug and treatment references - resources, excuse me, produced by pharmaceutical companies. And I like to think of it as a great set of training wheels for providers who are new to screening and want to make sure they cover all the bases.
And again, as Donna has said before, we created these materials to be easily adapted by anyone. And if you download the pocket guide and look at both sides of it, there's space on the back for you to put your own information about testing resources.
Even on the front using just a simple mailing label, you can put your own state's consent laws and any other regulations or practices that you want to change on the existing card.
Let's see. On slide - let's move to Slide 22, which is the form - the talking points in the manual.
We've organized a set of at-a-glance talking points for each of the four steps of ACTS. And they give sample dialogues and just really good tops for providers to approach several of the key points within each step of ACTS - the assessment step, the consent step, the test, and finally the support step.
And Dr. Futterman's going to go over a lot of the different steps of ACTS and how to approach your patients and talk to your patients about each one of these steps in just a few minutes.
The next slide, Slide 23, shows a few of the essential forms that are used for counseling and testing.
On the left, you see an optional risk assessment form that we talked about a few minutes ago. And we recognize that a lot of clinicians have already developed risk assessment forms, but we included this one because we thought it covered all of the main points. And this is also kind of cleverly designed so that any tick on the far right-hand column would flag a provider that you really needed to make sure that you offered HIV testing to this person and tried to get consent for it.
And then on the right is just an example of the latest New York State consent form, which has been recently streamlined and (unintelligible) maybe even more streamlined in the future. So we added those just for your reference.
Moving on to Slide 24, when we rolled out ACTS the first time, we included with the set of tools a pretty big chart sticker. And the chart ticker had boxes that covered a range of actions related to offering testing, including the patient's acceptance of testing, results, and some different elements of prevention.
The pilot sites that used the stickers told us pretty routinely that they were too big and too bulky. So we went back and in an effort to really make this user friendly, we designed a couple of different types of stickers on just standard Avery labels. So even though they're yellow and kind of garish and really stick out, they did serve as really great reminders in the charts.
And they come with a template that's downloadable from the web and you're able on a PC really to kind of tailor these to whatever types of questions that you want to ask or data that you want to collect about pre-test or post-test counseling.
Some of our pilot sites just use one sticker and some of them use stickers twice - one at the pre-test counseling visit and then a second sticker to document what they did about following up with the results of the tests.
Slide 25, the next slide, as we got into doing the trial of ACTS, we really realized that there was no greater motivator for improving testing than to confront providers regularly with the hard, cold facts. And in this case, that's HIV testing numbers.
As Donna said, it took a lot of work for us to get doctors to change practice, to get nurses to change practice. And on a lot of the follow-up meetings that we would have with these providers, we'd go and sit down and the first thing they would say is I've been testing all of my patients. Routinely we'd hear that.
And then we'd pull out our data set for that month and show the reality that no, in fact they were making progress, but it wasn't quite 100%.
So what we found was the presentation of real data was a great motivator for a lot of the providers. And not long into the trial, we decided the newsletter was really a great way to not only provide that data, but to also supplement some of the other things that were going on in the outside world with department of health recommending more routine testing and giving a synopsis of some of the different literature that supported routine testing.
So things like that have been included in the newsletter and they're really well received by the staffs and do - a lot of - anecdotally a lot of the staffs have told us that they've really changed their practices based on the information in that they get and the tips that they get from the newsletter. So that's been a great tool.
Moving on to Slide 26, we're going to talk just for a couple of minutes about materials that we've developed for patients.
Before we go into the brochure, which you see on this slide, I'd like to describe our ACTS poster, which unfortunately for some technical reasons we weren't able to post.
But the poster is an 11-by-17 version of the cover of these brochures. And we've found that it really helps to de-stigmatize testing by emphasizing that HIV testing is for everyone. It's a colorful tool. The clinicians like posting it in the waiting rooms. And it can really help normalize HIV testing. We've heard that from providers and from some patients.
The other thing that it's great for when it's placed in the exam room is just another prompt for the provider to remember to offer HIV counseling and testing to all of their patients.
So back to what you see on the slide here, the patient brochures, these brochures were produced for us here at the trial in English and in Spanish.
And in case anyone can blow up the Spanish and read it, we just wanted to say that given all of the different dialects of Spanish, ours because of our large Puerto Rican and Dominican populations here in the Bronx, it's more of a Caribbean Spanish.
But we think it could be used in other parts of the country where Mexican patients and other Central and South American patients that speak the - speak Spanish are seen.
These brochures are stocked in the waiting rooms of the ACTS clinics. And they contain really basic information on HIV transmission and prevention, as well as a, you know, painless overview of the process of getting tested for HIV.
And again, we've heard from providers at these ACTS clinics that the brochures do prime some patients for accepting the test when they actually get in the waiting room - I mean, sorry, the exam room and the provider suggests that they get tested.
And then we've also - we make many runs to the clinics to resupply the brochures, so that's nice to know.
And then finally on Slide 27, Dr. Futterman and I have worked for a number of years on social marketing campaigns designed to improve adolescent testing.
And one of the materials that's endured from these efforts is "The Deal," which is a CD-sized booklet. It's a lifestyle magazine that we've produced and it incorporates HIV/AIDS information as well as other wellness topics into the content that kids are interested in - dating, popular culture, music. All of those types of subjects are covered in the content of The Deal.
It's now in its fourth edition and we've been distributing The Deal to our ACTS pilot sites as a supplement to the HIV/AIDS education that young patients get when they meet with their providers.
So that's an overview of the ACTS tools and I'll just turn it back over to Dr. Futterman...
Thank you very much, Stephen.
And I have to say that many of us have been used to working on multidisciplinary teams in our healthcare settings, but one of the most rewarding things for me has been collaborating with people who really understand healthcare communications.
Both Stephen and our partner SENSEI Health, led by Susan Wolfson, have been instrumental in taking our health concepts to another level. So thank you, Stephen.
The next few minutes, we're going to be reviewing the elements of the ACTS card in more detail.
As Stephen mentioned, in our manual and on the web, we have something called talking points. And the talking points are literally sample scripts for this card. And you'll see that there are many ways to use these cards, the reminders on these cards to communicate to patients.
But what we - the reason why we included talking points is not everyone had a clue how to say it. So for example, in our first steps - sets, we call for people to talk about the benefits to your health and to others of routine counseling and testing. And I could talk for hours or days about that. But we wanted to give people a sample of concise language to do it.
So what I'm going to be doing is going through each of the elements of the card and talk a little bit about the sample way in which you would approach this.
As we said before, HIV/AIDS counseling and testing is rapidly evolving, so this is something that, you know, will be updated by us and also can be updated to reflect your local realities of (consent).
So the first letter for ACTS is A. And that in our system stands for assess. And the key thing here is we're not assessing for risk. We're assessing for readiness to test.
So one - and because it is still in almost all states a consented procedure, whether that's written or oral, we need to engage the patient enough to know if they're ready to proceed.
So we would start by explaining that it is now standard practice to discuss HIV with all patients. This is beneficial for both your health to know and also to prevent HIV transmission from person to person.
HIV is primarily transmitted through unprotected sex, but also through shared needles and by positive mothers to their children. We are now recommending HIV testing to everyone here in this clinic who has ever been sexually active or ever used injection drugs.
We're not singling you out. This is something we're recommending to all our patients. Before we do the test, we would have to ask for your consent. Do you feel ready today to hear more about the consent process or to discuss getting the test?
In general, that's a very quick thing. There will be some patients who want to discuss it more. But in general that is a very quick step.
The second card we have in here, Slide 29, has a number of yellow stickers on it. And essentially what that does is it's referring you to places in the manual where you can get more information.
So for example, it's going to tell you about the talking points or it's going to reference you to if you want to use a pre-screen. When we started this, there was a great desire for the system to enable people to identify their risks, and that still can be used in many settings, but does not have to be used.
We also have in the manual examples of what we consider reality-based prevention counseling, as well as issues on risk reduction.
So that just is a way of deconstructing the assess step and referring you to further resources in the guide.
The C in ACTS is the consent step. As we've said, this is based on the New York consent form in which we had to by law tell people the meaning of a positive and negative test. As you know, these words are the opposite in HIV of their standard meaning, so positive means you have HIV and negative means you don't. And that can be confusing to some people.
We describe the difference between confidential versus anonymous testing, that anonymous testing is available in other places, but if you do test positive, you will need to supply your name in order to get care.
In New York State, there is a new law mandating names reporting not just for people with AIDS but for people with HIV. And in fact that will be standard in almost every state as is it as condition - a new condition for getting CDC and soon HRSA funding for care.
So this names reporting is something that we review more in depth for people who test positive. And we also tell them that if they do test positive, we will speak to them about notifying their partners so that they can get support that they need and also prevent transmission to others.
In New York, we must do a domestic violence screening for each partner before a specific partner is notified.
So this is quick. We'll say to them that by law you must hear these things in order to give your consent, and do you feel ready to give the consent today.
In our experience, most people are not spending a lot of time hearing the details of this. A few will want to discuss it further, but for the most part the - once you even have started this, they're saying where do I sign. That is the consent step.
The next step is to do the test. And we don't think you have to describe all of the available tests. You just have to describe the actual tests you're using.
Again, this is much more information than people get for almost every other single test. When we do a VDRL test, we don't describe how it's an indirect test of antibodies for syphilis. We don't describe how we would do a lipid test or anything like that. But we are in a moment in which some of those details are still necessary for HIV.
There have been a number of other conference calls that have described how you explain to people what a preliminary positive and rapid testing means. I'm not going to go over that now, but if it comes up again in discussion we can certainly talk about it more.
So you're going to describe and provide the HIV test that you do and make a very clear plan to deliver results or have the patient wait for their rapid results. That's the test, the (TN) test.
And then the next slide, the S for support. Now this is a step that is both - is the most time consuming of all the steps either way.
So the first and in a way easiest is to give results and allow the person time to process. And that's true if they're positive or negative.
The first thing to say is that HIV testing by itself is not prevention. And you must discuss a brief description of prevention to the person. Having gotten your test results, do you - were you surprised, that can be an opportunity to hear a patient say to you yes I was surprised and review what their risk behaviors are.
If you identify significant ongoing risk behaviors, that's a point where it would be very important to know what prevention resources are available, either locally in your clinic, through social workers or counselors, or in the community through community-based organizations.
It's important before you do this that you have those resources lined up. Then you must clarify with them if you need to re-test in three months, the window period. So reinforcing that, if you've had any unprotected sex in the last three months, this test might not pick it up and the need to re-test.
In giving results, we really began to feel that the phone was a greatly underutilized part of giving results. And part of our moving towards understanding that HIV needed to become a more routine part of healthcare was looking at the way the rest of healthcare is routinely delivered.
And while none of us want to or would choose to give positive results on the phone, remember that in almost every setting, 99 out of 100 patients are going to be HIV negative.
So our system that we recommend is really routine, what else the healthcare system is doing. If you call patients back with their other results, make HIV be part of that. If you don't call patients back for negative results, just positives, then that's something that needs to be taken into account.
People get very alarmed at this. I could you tell someone they're positive over the phone. What - our recommendation is not to tell that they're positive over the phone but to say your test results - some of your test results have come back in and we need to talk to you about them.
That's part of the advantage of doing HIV testing as part of other things, so people don't immediately focus just on HIV.
But often a patient will say that must mean I'm HIV positive. The provider's response is I'm not telling you. I'm just saying I would like to discuss some of your results in person with you. And the person could again say doc, I know that means I'm positive. And you still don't have to confirm that on the phone. You can just go into saying let's come in and we'll talk about what your results are and what some of the next steps might be.
There's no question but that some people might assume they're positive based on that. And in our experience, hearing you're HIV positive is never a wonderful experience for anyone who hears that news. And we're not convinced that literally the way you've heard it is the instrumental factor as much as the results actually were.
Many people have gotten serious diagnoses over the phone, and while it's much better to do it in person, our limited numbers of people who get their results, it's about 66% to 75% in the best of circumstances I think is something we all have to take responsibility for.
Giving support for someone who is HIV positive obviously is a more complex issue. We feel very clear, one of our key messages to providers is that knowing how to give serious results or significant negative health results is something that they know how to do.
No one is again happy to do this. But in general, providers know how to tell people that there's an unexpected finding of cancer, that there's a bad - a negative pap - a bad pap smear result, abnormality on their mammogram that needs follow up, a diagnosis of diabetes.
This is what doctors, nurses, nurse practitioners are trained to do. And our goal is to say that doing it for HIV is not that different from something you know how to do.
Now of course, HIV is not the same as all those other things. But it is in the continuum of healthcare problems.
The first step in giving positive results on the next slide, 33, is pretty standard - giving results, allowing time to process, discussing the meaning of the results, clarifying any misconceptions, providing support, both yourself and helping the person figure out who can be support in their life, clearly linking to care, and again having resources and referrals either onsite at the place doing the testing or an immediate referral resource for HIV counseling and testing must be resolved before you begin a program of massive testing.
Prevention is something that we also think is crucial to raise at the first visit. Many clinicians for a long time felt that raising prevention was difficult for patients to hear at first.
But again, I think as we move towards routine healthcare principles, if someone had chickenpox, you would tell them immediately what the issues of contagion are - that it's transmitted via droplets and it's important for them to not be around people who haven't been exposed to this.
Similarly, we have come to believe that as part of telling someone their HIV results, informing them very straightforwardly about this being a transmissible disease through unprotected sex is important and should be done right away, and also giving them the advice that HIV is not something that's transmitted through casual contact. You can hug people and you can share food with them.
But having unprotected sex or injecting drugs with shared needles are two things that are highly risky and especially in the setting of someone who has HIV.
Finally, depending on your local state laws, in New York, partner notification is a key element of this and screening patients for domestic violence risk prior to partner notification is an important step.
As I said, almost every state is moving towards names reporting. And I think reassuring people that the names reporting system has been quite secure, that almost every name that would be reported through this would also be reported through health insurance, Medicaid, Medicare, or ADAP systems in the states and this is not a great change from what's been there already.
Finally in the last two overview summary slides, 34 and 35, I think we have covered very well what we wanted to, which is the rationale for moving towards routine testing and the way ACTS can help you do that, and some of the successes we've had with using this ACTS system.
So who will benefit? Well, number one, two, and three is your patient. They will benefit from having their health appropriately assessed at all points, from being able to access care (soon in their) - in the course of disease if they're positive, from learning about prevention.
The second who - group who would benefit is your practice. First of all, everyone who is starting to do this will be serving a leading role in the healthcare system in moving forward testing all of their patients according to recommendations.
Many sites can bill for additional counseling visits, and that's something that has to be worked out at the clinic level. And we all will have the satisfaction of participating in a national rollout of a very important new healthcare initiative.
Next to benefit is our community. We hope that using ACTS and scaling up our counseling and testing will help us to fine-tune ACTS and other approaches to this.
We want to understand and work with each of you to see how did it work - what was strong, what wasn't strong, what we need to revise. We hope that this ACTS can serve as a model for others to use and we're testing it out in a number of different settings.
And I think there will be a tremendous satisfaction in our HIV/AIDS community, which has made so much progress in the medical care for us to have solved this problem.
There is something that if we like our sisters and brothers in the rest of the world need to have some ongoing public health success. And I think demonstrating that here in the United States, this next phase, the beginning of our next 25 years is a time when we're going to be able to solve a significant unsolved problem in HIV/AIDS will be a real victory for all of us, similar to the victory we felt when the gay community originally reduced its rate of transmission. This is something our healthcare system can do and claim a lot of pride in.
As for us, we are going - in Slide 35 - we are going to continue disseminating this, both locally, regionally, and nationally. This conference call today we hope is the beginning of a relationship with many of you on using these tools and hearing back from you how they work.
We will be presenting ACTS and our results at both the International AIDS Conference in Toronto and also at the Ryan White Clinical Care Conference in August. We're going to be expanding this to the control sites and continuing to monitor its impact.
And we've also worked to implement this in two South African youth clinics where the positivity rates are 25% to 30%. That's - they're identifying five to ten new positive young people every single day.
So I think as we worry about the impact of this extra work and the resources we need, let's also remember the scale of this problem in the rest of the world that has even less - fewer resources.
We also are working on this in the Peds ER and certainly many of you know that the emergency rooms are going to be a key place to expand testing. And we hope that this can be used in those settings by others. And the National Assembly on School-Based Healthcare has also been using this.
So we think it's a system that can work in many different testing sites and situations, is adaptable, and we hope will be part of the solution that we all are working towards in solving this problem with people with HIV not knowing.
We are now - so thank you very much. Thank you for listening and participating.
So the next part of this call is going to be opened up to questions. And what we would like to do is have the first series of questions be on logistics and implementation. What - or questions about how you would implement this in your site, in your region, what are some of the logistics about it and what are some of the content questions you might have.
And then the second half of questions will be on the philosophy and why the big move towards routine counseling and testing and what are some of the issues people might have or feel might come up in their community.
I think as we all work on this together, we will continue to learn and continue to support each other.
If there's time after the questions section, we will do two role models of using ACTS in action with simulated patients. And then we will definitely be closing the call at 5 o'clock.
So as (Christy) has said, in order to make your call, you press star then the 1 key and she will announce the questioners.
Your first question comes from the line of Llaina Rash.
In Wisconsin, I'm with (Maytec) Wisconsin and I had a question because I'm truly interested in implementing and marketing this in the state.
As we market this to different providers, are there data collection tools that we will need to submit for you to evaluate?
No, we're not going to be doing it that way. What we're hoping is that those sites that have the capability of looking at baseline testing rate and the change after ACTS will be able to do that locally. But it's not a requirement. We're going to continue testing it and measuring it here in New York at our learning lab here in the Bronx, but it's not a requirement for the ongoing.
Is that helpful or not?
I mean, there's always the desire to evaluate and want to know. And of course we'd want to know. But we certainly don't have the resources for that. And, you know, it's time to set this baby free.
Again if you have a question or comment, press star-1 on our telephone keypad...
Your next question comes from the line of Theresa Szichak.
Hi. I was just wondering, I work in an adolescent health clinic. Currently the social workers and the nurses do the HIV counseling. I had the impression from this that you thought it should be more of a clinician-driven assessment or, you know, counseling and consent.
Is that what you're thinking?
A very good question, thank you.
By the way, where are you from?
Well, it all depends what the capacity is. Some of our sites that have been most successful are because the nurses, the triage nurses were trained to do this and do it as part of their intake.
We're offering testing to everyone here, this is the information you need to know, are you ready to do it, and they do the paperwork and the testing as part of their intake or when the patient leaves. That is terrific and I think in many ways might be the success of this.
We are not taking away counseling and testing from anyone through this system. So if you have social workers who can test as many people who want to get the test, that's fantastic.
Most social workers don't view HIV counseling and testing as their full job. They want to do other things. And they are often in a limited resource to really be available to do all the things that a social worker wants and needs to do.
So what we have found is we're expanding this to providers and saying it's not only nurses and counselors who do this, but you can also do it. And so the basic philosophy is inclusiveness.
For people who have been doing the counseling and testing, the big change is to make them realize it can be much simpler. Most people who have been doing something one way for a very long time feel very invested in that.
So in some ways, the people, especially those who went through week-long trainings and believe the huge rationale that we all believed for a very long time about the importance of every single step in counseling, they may have the hardest time changing. People who've never done this will often say (ah), that's what we always thought. We said that ten years ago, it shouldn't be such a separate big deal and why wasn't it part of what we could do for everyone.
So I think philosophically the people doing the current counseling and testing sometimes may have more trouble with this than the people we're opening it to, although the people we are opening it to may not think it's an important or crucial thing.
So there's a lot of convincing and problem solving to do. But bottom line we're not taking it away from anyone. We're just expanding the pool of people who can use it.
Do you have thoughts on that?
That sounds very reasonable to me, yeah.
I do have another part of a question though.
In regard to the - we were talking about in Michigan, I don't know if it's - when I went through my week-long training, we were told that we needed to explain the kind of test we were doing, whether it was a swab and the enzyme that's present or if it was in the blood and the antibodies that were present.
Were you saying that you think that we're - well, maybe not wasting time, but using that may be better spent with other issues in explaining the test - the way the test is done, when you compared it to like syphilis testing.
Is that - did I hear you right?
I strongly believe that very few patients are interested in how this - in the mechanics of how this test works. The only test-related question that I think is important to address is when you're doing an oral swab, that you say we're testing this just like all of the other tests for the antibody. This doesn't mean we're looking at the virus in your mouth and oral fluid is not a way that HIV passes from person to another.
That's the only confusion that people sometimes have. I thought you said that we could kiss and that was safe. And now you're testing for HIV in the mouth.
So that's the only one. But I think, you know, there's a lot in our counseling and testing that is confusing, is - and I do think (we) just going to have to let go of a lot of it because I don't think it moves the plot forward.
I don't think, you know, it affects anyone's risk behavior, their willingness to test, what they understand about having HIV to know literally the mechanics of the test.
You know, and you have some experience with this. Is that your feeling?
Totally. I would - I - actually what I'm thinking is I want to check back in our counseling certification and see if it's still required that we do that because I think it's, you know, as I already said kind of a waste of time. They don't want to know.
And you're right, they do have a curiosity sometimes about with the swab, well, I thought I couldn't transmit it this way. But, you know, to clarify that. But otherwise no, I agree, that that's just lost on them. You lose them in the counseling part sometimes when you talk about those kind of things.
That's why I think part of the message we're giving is this is a paradigm shift. And it's freeing all of us to look at what we're saying and to realize that a lot of what we've been doing by rote for many years just is not that relevant. And sometimes it takes, you know, the authority or someone external like us to have done this work and put it together to do that.
But, you know, in other ways I want to say this is not rocket science. It's just by walking in with something that someone figured out and thought about and took the steps to simplify, it saves us all doing the work around the country. But it also lends a, you know, an acceptability and an authority to it that I think can be helpful to all of us.
This is also going to be on both the AETC web site, so it will have that, you know, I want to - authority. I know there's a better word - and that endorsement. And it also will be on the American Academy of Pediatrics web site.
So it's just one model. And we're not saying this is perfect, this is the only thing to use. But it's a way to get in the door and say you know what? It's really okay to do this differently.
Is there a next question?
Your next question comes from the line of April Timmons.
Hi. I'm calling from SUNY Downstate Medical Center in Brooklyn, New York. And we've just implemented routine rapid testing (unintelligible) here at the hospital.
And one thing that I think has been helpful is that now technically in New York, all the patient has to do is leave the consent form. And then that will take care of the pre-test counseling requirements and then we can proceed and do the test from there.
But I think this system is very good. And we've been using bits and pieces of it to help us streamline our process and make our rapid testing project more successful here.
Again, I think that, you know, there's going to be many ways this gets implemented. What we think we have is something that can either be implemented as is or provide a platform for training.
I think that when most people start counseling and testing because they've been inculcated with this is, you know, such a specialized system, they're afraid what to do and what to say. And if you show them that in fact there's only four things you have to say and that's in ACTS - are you ready for a test today, here's your consent form, we're doing the test, and we're providing you with support - that that can facilitate everyone moving forward.
(Thank you) for those comments, April.
Your next question comes from Juan Vasquez.
Hi. How are you doing?
Again, I'm from Tallahassee. My question is you were saying that when they actually used this program you doubled the testing rate but only got 24% of the people in the clinics tested.
What would you say is a percentage that you would actually say is something valid? Because you were saying that you would want to increase that?
I mean, I guess in a percentage, what percentage-wise? Because if you're doubling it, you said that's good, but you also want more than just 24%
I mean, I would like to see a clinic testing at least half their people. And if we're talking about routine, getting - my ultimate goal is for it to be where prenatal testing is. You know, there we're talking 80%,90%.
I think that's - if we're going to do routine that's what we should aim towards.
Of course, the goal, 100%, but you never meet a 100% goal in this kind of quality initiatives.
But, you know, if we're doing 24% a year, by the time you turn this over, it would take four or five years to get everyone tested. And I think that's a long time. It's a long time to sustain it in the clinic and it's a long time till everyone knows their status.
So I think our goal should be higher than 1/4 of the patients or 20% of the patients knowing.
My friends though who do practice change in the clinics say this is phenomenal, we don't usually see this kind of an increase, this takes a long time, you have to look at the big picture over time.
But I know the effort it took for my team to go into each of these clinics over the course of a year. I don't think it's a viable strategy nationally to implement routine testing this way. It's just too labor intensive and in a way too slow.
That's why I think the combination of a tool plus a institutional change and a change in the way of looking at this are really going to be the way to do it. But I'm very concerned that the CDC's plans, which they are planning to roll out this summer, won't go further than what they've done before unless there really is a national mobilization.
And I think the prenatal screening is the perfect model for us. What were the elements and resources that it took to make routine counseling and testing in the prenatal setting happen. It's a lot of, you know, big picture institutional change.
You have a follow-up question from the line of Llaina Rash.
Actually I had two questions, I'm sorry.
The first question, you stated that the information will be on the AETC web site as well as the Adolescent AIDS web site. Will those materials still be accessible to us to download?
Yes they will. And as I said, right now we have a PDF of the presentation, but we're going to put a slide set up there that you guys can download and tailor for your own sites to use in training, you know, with your own clinics. And that's trainers for other clinics in your areas that might want to use rapid and routine testing.
And then it also stated on the web site that there will be a charge for hard copies?
We developed these materials with limited resources from the AETC.
And just like the materials that we sort of modeled these after with the pharmaceutical companies, they weren't cheap. So we have electronic copies that we're more than welcome to disseminate free of charge, but we actually don't have a very large supply left of the hard copies.
What we will also be doing later in the week is putting up some information about ordering materials and paying for them based on the cost of the printers and some of the other folks that we use, local vendors that we use here to produce hard copies.
So if you do have some money and wanted to get hard copies, later in the week you'll be able to see how much it will cost and you'll be linked to one of us here on staff that can kind of - be your liaison to get some of those materials.
Will the participants in this call be notified when that information is available on the site? Or should we just check at the end of the week or so?
Check back on Monday.
Check on Monday. Okay.
(By) Monday it'll be up there.
Just to give you an idea of the brochures for the patients, just printing costs are about 10 cents a copy. So, you know, it'll be less if you order in bulk. We're about to put in a big order based on, you know, if anyone wants these.
We don't know if, you know, so for example, for $100, you would get 1000 of the brochures. It - not everyone may have that kind of resources available. That's why it is available for free and you might get a better deal printing it locally instead of us printing and shipping it to you.
We are trying to put up as much as we can for free and also facilitate those who have somewhat of a budget for this.
And just parenthetically, we are also looking for some private support to be able to make this in the quantities that we could do national dissemination, either government saying right, this is perfect, we need to get it out there, if you - if we get all that feedback from you, that may help our case, or getting some private pharmaceutical support to get it out there.
We're working hard because we think we have something that'll be useful for people.
Which reminds me that we are very interested - someone asked before about evaluation and what you've just asked. A crucial part of this training is your feedback. And so we wanted to make sure that everyone, the one favor we ask of everyone is that you do an evaluation at the end of this by visiting the AETC web site. And...
Or you can visit the Adolescent AIDS web site where you registered. At the very bottom of the ACTS page, there's a similar button to the registration button, which will take you straight to an online form. It's 15 questions. It shouldn't take more than two or three minutes to fill it out. And it would be really great to have your feedback.
And yeah, we'll also restate our email addresses so you can write to us if you want to implement this and get some help from us, okay.
And all of that information is on the last slide of this talk.
Next? Are there - now let's open it up if anyone has philosophical questions in addition to the practical questions.
Your next question comes from the line of Ashley Tijerina.
Hi. This actually (Eileen) and I'm in Dallas.
And my question was basically regards large hospitals. I'm in a large county hospital. We do 16,000 deliveries a year, so we are doing all of those testing there and at delivery.
And on non-pregnant folks, we do about 500 to 600 a month. And I was curious if you had done your program in a large comparable facility.
We are - no we haven't. We're doing it in outpatient clinics and in the emergency department of a large hospital.
What might be some of the concerns you would have about that?
Well, because we use a lot of residents, interns, people changing from one rotation to the next. And I was - because we would have to kind of do some sort of education with those folks and I wondered if you had come up with anything like that.
Well, I think what we would hope is that the ACTS system, a short slide show, and the palm cards adapted for your local site - what?
And the manual.
And the manual would enable you to do those trainings in an ongoing way, that, you know, you could take - I don't think it would take much more than an hour to do a training where people - if you have the buy-in that this is something that everyone can and should be doing, that you basically train them in the essence of what must be said to get consent and to do the test for people.
I think in a hospital, you would need to know who's on call to do backup for positives, have to make the referral of positives. If there were any potential referrals for high-risk negatives who need ongoing prevention counseling, and also for your team to look at are there lessons in the maternity side, how did you get that - what's your percentage of deliveries that currently get tested and what did it take you to scale up to that and to have an ongoing system and what of that can be brought over to the medical side.
Yeah, we have it really good because we test them consistently during their pregnancy. And actually we do - we don't do a screening at delivery. But those who come in with no prenatal care, they actually do a confirmatory test there and then. So we - we're pretty good at that aspect of it.
What lessons would you take over to the medical side of how to make it be efficient?
I'd have to think on that because it's such a huge volume. But I think we could get a good buy-in with especially the homeless population, the drug users and so forth that we see in the ER. It might be worthwhile doing more confirmatory there and then...
...with those patients.
I think the ER and inpatient are two key places.
You know, if you were going to start in a hospital, those would be the two places.
And the other thing that, you know, some of our conventional wisdom that's not true, targeted testing, which is what you're talking about, still misses about half the people with HIV.
So all of us, you know, it's funny. I always say our kids do the visual AIDS test. They could look at someone and know if it's safe to have unsafe sex by looking in their eyes.
And I think our providers often do the same thing. We think we can judge who's at risk by what they look like or what they've chosen to tell us.
You're absolutely right.
And part of the message here is not every person's going to admit to their risk. And it almost doesn't matter.
So how do we move away from our own visual AIDS test to, you know, more reality based.
Your next question comes form the line of Nancy Miertschin.
Hi, this is Nancy Miertschin. I'm in Houston, Texas, another big county hospital system.
You mentioned a few minutes ago the challenges, big picture institutional change. And that's certainly a challenge for us. I'm wondering if you foresee any special initiatives by CDC or HRSA or new funding that might help us get this launched in our big systems?
I assume that when CDC again comes out with its new recommendations this summer that there will be some suggestions about resources and strategies for implementing this.
I don't know if anyone from HRSA is on the call who would want to add to that. If - but in the absence of that, I think that part of this is going to be advocacy, that these new healthcare mandates need to come with new resources. Part of it will be a redirection of current resources to enable us all to do this. But I think it will be, you know, a sort of combination.
I think what's going to be different this time is we are way beyond pilot sites. You know, this is something that should not be a SPNS program, a Special Program of National Significance, just proven in a couple of places. I think we're at the time where the rationale and the resources can be mobilized to do it.
And if you - if - (Christy), if you could see if Lynn Wegman is in the question line and if she wanted to speak to this, that would be terrific.
If not, I think we're all pretty aware and I hope this will become a topic for either debate or discussion at the Ryan White Care Conference. And, you know, I've been on an advisory committee for CDC and looking at testing and looking at their strategic plan. And this is certainly an issue that's been raised there many times, how we're going to do this.
Could I add on another part of a question about consent?
If we implement something like this and we identify a number of high-risk negatives, is there any way to get around or streamline barriers to contacting them for follow-up reminders?
About testing in a year?
Well, three months, six months, a year. Do we have to have a special consent to call them up to do that? Or...
(I don't think)...
...has anybody thought through that issue?
Well, I don't think you would.
The only consent laws that I'm aware of are specifically around doing the HIV testing. And so any kind of system where you want to remind people, I would tell people that your test is negative but, you know, what you've shared in this encounter makes me concerned that, you know, that hopefully you can stay negative, but let's stay in touch.
We'll call you in a - in three months to remind you. Or we'll call you in a year. And also having perhaps local either hospital-based or CBO programs you can refer them to.
Okay. Thank you.
You're so welcome. Good luck.
(Christy) is our Operator and I was wondering how many people are online for questions?
You have two.
We have two, okay. If more people don't go on, we may have time for one role play.
Your next question comes from Yvette Rivero.
Hi. I'm the - I'm in Florida and my job is to actually go to every single labor and delivery hospital and try to implement rapid testing on the labor floor. And I wish that I would've had this two years ago when we started because I think this would've been an asset to the hospitals.
I can download some of those forms and I guess ship them out to the hospitals? Is that correct?
Because everything that you've stated and everything that you've talked about has been echoed by the nurse managers on labor and delivery and the nurses, how the doctors are not really testing because they're - they are - they don't see the risks.
And this is one thing that I really would like for them to if they would change their attitude, maybe we would get more testing done on labor and delivery and they would then implement rapid testing
Now that's interesting, because how many years into this are we and still facing challenges in some of the labor and delivery areas.
(You) wouldn't believe.
Sometimes we assume (oh) we solved that problem.
But, you know, the other thing that we've learned over and over again is that unless we keep up with the information and we keep going back and retraining and re-encouraging, initiatives get lost, even if they're codified.
So I think that this a very important lesson for us. L We learned it in the TB epidemic that we let our guard down and then had multi-drug-resistant TB. We can't let our guard down with the labor and delivery as we're at the same time expanding this to other people in contact with our healthcare system.
I think we have the last one coming up. Last question, (Christy).
Your next question is from Brian Abascal.
I'm from Boston, Massachusetts. I'm at Children's Hospital Boston. And I'm one of the HIV counselors in the adolescent department. I'm one of those people that does the Massachusetts Department of Health confidential testing.
And I was just wondering, I mean, part of the - part of what makes our sessions so long is all of the, you know, paperwork that we have to fill out in order to send off to the state lab. And, you know, for them to do the testing for confidential and also free, which is a big incentive for people to come in and get a test for HIV.
And I just was wondering if you had any suggestions on trying to implement a quicker method of doing that testing, you know, through clinicians or whether or not, you know, you recommend trying to get more clinicians and healthcare providers to encourage a testing. And if the patient, you know, really, really wants a confidential and a free test, then to refer them to us for the more lengthier session.
First of all, I just want to ask you, do you think - I don't know how many counselors you have at the children's program, but do you think you could test everyone in the hospital who should get tested? (Unintelligible...
...current counseling staff.
Absolutely not, of course. But, you know, it's like I said. I'm in the adolescent department.
And we try to test everyone who gets referred from a healthcare provider. And the healthcare providers here are sort of - are trained to do a sort of risk assessment, you know, during their intake. And if it, you know, they find that they're sexually active, then they refer them to us.
Well that's, you know, a good system. But what we're looking at is ways of scaling that up.
And I think - I agree with you, that the paperwork slows it down and slows it down for you, and it also will slow it down for the providers. That's part of why I have been really open more and more to the notion of the oral consent and really routinizing.
I think if we're calling for and agree that we need to routinize counseling and testing in this country as a strategy for helping people learn their status, that we're going to need to make some significant changes.
And there's no question but that the forms have been a real barrier. And part of the reason the lab form is so complicated is that labs are required to report positives to the health department. So they feel they need all the information up front. So that means 99 out of 100 times you're collecting information that they will never use, but the lab can't risk being shut down for all of their lab functions by not doing this.
And I think that that - it's - that unfortunately that's going to be a state-by-state negotiation. And as providers and health department people move more and more into this notion of routinizing testing, I think the form-related issues are going to rise front and center.
Our hospital, which should be in the lead on this, we've been very slow in implementing rapid testing because we recently moved to an electronic patient record and how do we put in results externally into the computerized system has been a complication for us here.
So, you know, there always are going to be barriers. And like I said, I think half of this work is logistics. There's changing people's attitudes about testing, giving them the tools to know what to do and say. But a good, good, good part of our work is working through the logistics that you and others have raised.
And then finally, you were saying confidential. When the providers do the test, it's still confidential, right?
Well, I mean, it's, you know, it's patient/provider confidentiality, but it goes on their medical, you know, it goes in their medical record and, you know, if it's done, the HIV test is done through their provider, it's billed to their insurance, you know.
As a discreet test?
Yeah. Well, yeah.
You know, and so - and that's a lot of the - there's a stigma that I think is surrounded by having a routine HIV test on your medical record or go - billed to your insurance because, you know, especially since, you know, if they - if the danger of them having a positive result means that, you know, there's no way for them to keep that from, you know, their - being on their medical record.
And I know - I understand this is a stigma and that, you know, if there is a positive result that we're going to try to get them into care, which means it would go onto their medical record anyways.
But what are your, I mean, what are you - do you have any suggestions on trying to, you know, to encourage people to get a - tested through their provider and through their insurance?
Well, I think in my mind, this is part of our paradigm shift, that, you know, if we're doing this routine, it doesn't have to be a stigma. It's, you know, most of - the vast majority of people who are tested for syphilis with routine VDRLs, it has nothing to do with them. It's not viewed as a stigma. It's just part of a routine battery of tests, the same with STD screening.
And I think we're in a transition period where seeing an HIV test on someone's medical record will not indicate that (it) was risk-based but will be part of their routine healthcare like, you know, other things that we screen for.
We're not there yet, but I see that's the transition we're in. And like you said, once someone is HIV positive, that's part of their medical record and they need care for it.
There are many things, you know, that people are embarrassed about that are in their healthcare record. And I think, you know, in many ways, moving from HIV being so unique to HIV being back in the medical system where it's sort of tossed in with everyone else who's fighting for patient privacy and fighting for resources. And, you know, certainly mental health (unintelligible) have been stigmatized, documenting in someone's chart their substance use is very tricky.
And, you know, I think we've worked long and hard with adolescents so that things may not get individually billed on their record. But, you know, that's always an issue with STDs and why everyone caring for adolescents knows that (unintelligible) accessing healthcare confidentially is crucial.
So thank you.
I - we might have time for one more question, but I think basically we have to start closing this up.
Is there anyone else on the line, (Christy)?
Yes. Your next question is from JoAnna Rinaldi.
Okay, JoAnna, if you could ask a quick question and I'll give a quick answer. Then we're going to start wrapping up.
Hi. Can you hear me?
Hello, can you hear me?
Yes. Thank you.
Yes. This is not JoAnna, but this is from the JoAnna Rinaldi line.
So I'm calling from California.
I just wanted to first say I appreciated the presentation today and I think lots of people want to improve case finding. A couple of comments though.
One is - excuse me - that I think it's important to completely throw the baby out with the bath water. And that is to say that, you know, there's very good data out now showing that counseling associated with testing does in fact change behavior and improve rates of incidents of STDs.
So to - I think it's important to not forget that, and in particular as it relates to high-risk negatives. You know, it's - in a busy hospital setting, it's important I think to try to improve the capacity to do some testing and to reduce barriers, but I also think it's important to make sure to refer those folks who are identified particularly as having ongoing risk, that they get referred appropriately to people who can spend the time that it takes to do good counseling.
So that's just a comment. And I'd be interested in your thoughts about that.
Well, first of all, I strongly agree with your first - your second point, which is the need to have referral resources for ongoing prevention counseling. And to me that is one of the very important roles for the current HIV counselors who do exist and who may not have to do all the routine counseling and testing but could pay that role in not only prevention but also link it to care, which isn't always easily accomplished as well. So to me, it's sort of redirecting where people put the majority of their work.
The first point you made around success models of risk reduction in counseling and testing, I would be very interested in hearing more about those resources and studies because there's a lot of perceived wisdom right now that the traditional way of doing it is not working. But we're certainly hopeful that there are models available that can impact our prevention because we need to do that.
So if you would forward any of these references to me with the address on the slide, we'll be happy to include them in the posted resources. We have a number of articles up there that we feel back up some of the points we were making and we'd be thrilled to include yours as well.
So thank you very much.
So we need to wrap up the call. Again, thank you to all of you who are both here today and interested in changing your practice on HIV counseling and testing.
We and the AETC would love to hear about it. This is going to be a major piece of work for all of us in the next few years and, you know, we hope we can contribute a small piece to what we foresee as a success yet to come.
For our learning purposes and also for our funders, if you could complete the evaluation on our web site where you registered, we would really greatly appreciate that. We - as we said, we had over 200 people signed up for the call and we'd very much like to get a significant number of you to do the evaluation.
, the ACTS page, and when you're at the bottom of the page, you can get to the evaluation.
We - please email questions to us. Again, the number's the last slide and also should be available on the ACTS page for you. If we get enough questions or they look like they'd be of interest, we'll post them as a frequently asked questions on our web site as well.
We hope to be in your thoughts and useful for you as we all proceed to this and very much look forward to having this.
If there is a huge, you know, interest in the next phase of implementation, you know, we always can explore how we continue this interaction. I think there'll be a lot of lessons to be learned from each of us to each of us as we go forward with this work and our other work in HIV/AIDS.
So once again, thank you very much for your participation, and much more for the work that you've done and will continue to do.
This concludes today's conference call. You may now disconnect.