The EMA Ryan White consumer survey results are here!

This is a big deal.

Almost 400 people living with HIV told us about the services they use and the kinds of problems they had getting what they need. And lots of other things too. You’ll have to read the report to get all the details. But here’s a quick summary of what we learned and how we use this information.

Good news and bad news (mostly good news)

The region’s Ryan White clients are retained in care and virally suppressed. Almost everyone is getting the HIV medical care they need and are satisfied with the services they receive. Most people have insurance and a regular place for HIV care. They like and trust their doctors and case managers.

But

Life is hard for many people living with HIV who are living in poverty. Inadequate and unreliable transportation, unaffordable co-pays and deductibles, a history of incarceration, and homelessness and lack of affordable housing are the most common challenges people reported. These challenges prevent them from getting the medical care and other services that they need. But more importantly, the challenge of living in poverty with complex health conditions is really stressful. People need help and support to live healthy and happy lives.

Why the survey is important

We asked a lot of questions, which is why we have a 45+ page report. The report describes how we designed the survey, who responded, and what people told us. We also did advanced statistical analysis to see what kinds of patterns we could see from what people told us. We included other research and data about people living with HIV and their access to services in our EMA and in the United States to give us a better picture of how our EMA compares to other places.

The Planning Council and AACO use the information from the survey to improve services and to better understand PLWH’s experiences and challenges. The Planning Council uses this information when they decide the EMA’s service priorities and how the EMA’s funds will be budgeted. AACO uses this information in the HRSA grant applications and in other reports. We have heard that HIV service providers use this information when they write grant proposals and in planning their programs. 

We couldn’t have done it without you

This survey would not be possible without the support of Ryan White service providers. We send them our appreciation. But our biggest thanks are reserved for the individuals who shared their personal information and sometimes painful stories with us. We are grateful for your trust and vulnerability. We will use this information as best we can to continue to provide quality services to the people living with HIV in our EMA.

The full report is available here. 

8 ways to improve health care for young gay and bi men

In June 2014, the Office of HIV Planning held focus groups with young men who have sex with men (YMSM) at three local organizations serving LGBTQ youth and young adults. The groups discussed the young men's experiences with health care, their ideal health care experience, and HIV testing in Philadelphia.  The full analysis and recommendations can be found here.

In order to decrease new cases of HIV and AIDS, we need to successfully engage young gay and bi men in primary care and address the fundamental social conditions contributing to their increased risk for HIV. Between 2006 and 2009, there was an estimated 54.5% increase in new infections among gay and bi men in Philadelphia. This increase was driven by new infections among African American men who have sex with men between the ages of 13-24. A paper by Stall et. al in 2009  estimated that if current trends continued half of the young black gay and bi men will have HIV by the age of 35. They also estimated that half of all men who have sex with men (MSM) would be HIV-positive by the age of 50. These numbers are dire. We must do a better job at meeting the medical and social needs of young gay and bi men. 

The following recommendations range from large systemic changes to improving interpersonal exchanges within health care settings. These recommendations are informed by both the analysis of the focus group discussions and the current literature (see report for a full list of the cited research). 

Increasing access to and engagement with primary care for YMSM is essential. Engagement in primary care is an especially important tool in the HIV prevention “toolbox” in this age of biomedical interventions like pre-exposure prophylaxis and “treatment as prevention”. HIV-negative YMSM should be linked to appropriate interventions and have regular sexual health screenings. YMSM who are regularly tested and engaged in health care will have a better chance of being linked to HIV care and treatment, should they acquire HIV. Programs that engage YMSM in health care should address their complex needs, including mental health, substance use, chronic health conditions, and social needs, in developmentally appropriate ways.

A combination of routine testing in all primary care settings and targeted community-based testing is necessary. Risk-based testing alone may miss high-risk individuals who are reluctant to disclose same-sex attraction and/or their sexual behaviors or substance use.

Comprehensive evidence-based sexual health education, inclusive of all gender identities and sexual orientations, is needed in the Philadelphia school district. Young people need sexual health education that promotes not only their health but their well-being.

HIV testing protocols should address concerns about confidentiality. HIV testing programs ought to consider who provides the counselling and testing, where testing occurs, and how to address concerns about confidentiality and privacy. It may be beneficial to include information about privacy protections and confidential testing protocols in outreach and marketing materials, in order to address those concerns before they can become barriers to testing.

Special attention should be paid to creating welcoming and accepting organizational cultures. Health care organizations need to prioritize the barriers, challenges and concerns of YMSM. YMSM want to go to providers who can relate to their experiences and accept them as they are.

Relevant information about local services, sexual health, and HIV/STD testing should be online in the places YMSM are likely to find it. Reliable online content will help many YMSM, especially those who are reluctant or unable to access services in the “gay” community. More local research is needed to better understand how Philadelphia’s youth access online health information.

Community level efforts are needed to address HIV stigma and discrimination of LGBTQ individuals, which persist and act as a barrier to open communication about the sexual health needs of YMSM.

Public health programs and health care organizations must be sensitive to the effects of stigma and discrimination on YMSM; especially minority YMSM who face not only stigma because of their sexuality and/or gender expression, but also live in a society with pervasive structural racism.  

Please share your ideas, insights and opinions about the recommendations and how we can better meet the needs of young gay and bi men in Philadelphia.

Linking Clients to Care: A New Tool

It's a common enough story: someone is diagnosed with HIV. That person is told she needs to visit the doctor as soon as possible. Maybe that person calls for an appointment, and maybe she doesn't - but that person doesn't make it to the doctor that week. Or that month. It could be a child care problem, or a transportation problem, or an appointment availability problem.

But in some cases, it's just that people who were just diagnosed with HIV don't know that there is a system of care available to them -- even if they can't pay for services. In 2010, 18% of newly-diagnosed Philadelphians with HIV weren't linked to care within 90 days. We don't know each person's reasons for not getting medical care right away, but lack of knowledge of the care system is an obvious barrier for newly-diagnosed clients. In fact, through our local needs assessments, we've repeatedly found that many people living with HIV/AIDS report not accessing medical care because they couldn't afford it. We're lucky enough to have a comprehensive system of services available through Ryan White, but newly-diagnosed clients won't know about it if no one tells them it's there.



Here's a preview. Download a copy here.

At the same time, we know that it's not always easy for HIV testers to give consistent messaging while getting important information from their clients.  Enter, our new linkage to care tool. We hope that this tool will relieve some of the burden on HIV testers, increase access to care and other services for newly-diagnosed people with HIV, and improve linkage to care performance for our local provider sites.



We developed this tool after an extensive review of treatment readiness assessments in use across the country, and reduced the questions to the most relevant ones for helping clients with their initial linkage to care.  It was developed in partnership with the Points of Integration Workgroup, which spent a great deal of time honing both the language and the questions.  The tool was then presented to both the Philadelphia EMA Ryan White Part A Planning Council and the Philadelphia HIV Prevention Planning Group for additional feedback and adjustments.

We would like to note that we developed this tool as an aid for providers, and we designed it to help individual HIV testers improve access to services for their clients (and, by extension, to improve their own performance). This tool was not designed for data collection. Testers might decide to make copies and use a separate form for each client, in order to provide an “at a glance” summary of what is most needed to make that first linkage.  They might use pieces of this tool as a supplement to their own routines.  They might keep a copy with them to use as a discussion guide.  How they use the tool is up to them, but we do hope that it proves useful in their day-to-day work.

Of course, like all of our documents, this is free to distribute and reproduce.  We made it in black and white to be copier-friendly. We also included fainter lines in the notes section, allowing the neater testers among us to write along the lines and the more out-of-the-box testers to write willy-nilly in whatever direction they choose. We wanted this to be as user-friendly as possible. In that spirit, we welcome feedback and suggestions. Feel free to comment here, or use the contact information on the form to get in touch.

Download the linkage to care tool here - and share widely!
 

Quick Notes from the Federal AIDS Policy Partnership meeting

The Office of HIV Planning is a member of the Federal AIDS Policy Partnership (FAPP), a coalition of organizations from all over the country that advocate for people living with HIV and the organizations that serve them. You can learn more about FAPP and how to become a member organization here. Individuals living with HIV are also encouraged to join.  The group meets about four times a year, our last meeting was on February 12th. At that meeting we had some informative discussions with Dr. Jonathan Mermin, Director, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention at the Centers for Disease Control and Prevention (CDC) and Dr. Laura Cheever, Associate Administrator for HRSA's HIV/AIDS Bureau.  We also discussed updates on implementation of the Affordable Care Act (ACA) and the reauthorization fo the Ryan White Program.

Dr. Mermin's presentation is well worth your time to review (slides here). He shared information on HIV prevention funding, national progress on the National HIV/AIDS Strategy (NHAS), and how the CDC is addressing HIV prevention in terms of the care continuum.  A few things really stuck with me. When talking about new HIV cases, Dr. Mermin mentioned that although incidence has been stable over all, there have been increases in the number of new HIV cases for men who have sex with men and young men who have sex with men, 12% and 22%, respectively. The CDC and it's partners are focusing on High Impact Prevention, as the future of HIV prevention. The keys to High Impact Prevention are aligning HIV prevention resources to the geographical areas and populations most affected by HIV, using cost-effective and evidence-based methods, maximizing the number of people living with HIV/AIDS with a suppressed viral load, and using data monitoring, dissemination and feedback to improve outcomes for organizations and jurisdictions.The CDC is also working closely with HRSA to align as much of the HIV care and prevention activities as possible; including community planning, data reporting, and policies.


A major topic of discussion with Dr. Cheever was the future of the Ryan White program, in the era of health reform (ACA). Much of the conversation was informed by the discussion  at the Ryan White Working Group meeting (the day before). That discussion focused mostly on when and how to advocate for the reauthorization of the law, and what it might include. Consensus from that discussion was it would be best for the community to wait until 2015 to push for reauthorization because so much is still unknown about how Ryan White programs will work in the context of expanded health coverage and other reforms of the ACA. The community of Ryan White providers and consumers need to collect stories of the successes of the program from the local levels: who is served, how their lives are improved, and what benefits and outcomes do we see on an aggregate level. There was also consensus that the next version of the Ryan White law will be transformative, in other words, it will include a lot of changes to how the program works, what services are provided and who is eligible.

Dr. Cheever also recommended that we need to focus our efforts to help people start and stay in HIV care. The local communities need to provide qualitative data (stories) about how and why people get lost and also linked to care. These qualitative data can work with the quantitative data (surveillance, program data) to develop effective plans for our HIV care systems, including Ryan White. Local communities, like the Philadelphia EMA, should focus on those who need the most help accessing and maintaining care and provide the supports they need. Those supports might include housing, mental health treatment, substance abuse treatment, child care, transportation or social support. The Ryan White program has the ability to meet these needs, but we have to direct resources to where they are most needed. We need to adapt the Ryan White system to work with the larger health care systems, not apart from them.

If I come away from these two meetings with any theme, it's "adapt or perish". We all need to become knowledgeable about the ACA and other changes in the science and policy world of HIV/AIDS. We have, as always, to do more with less. So we have to be informed, proactive, and deliberate.

The (PA) State of HIV Planning: A report back from the September 2013 PA HPG meeting

This week, I had the privilege of attending the PA statewide HIV Planning Group (HPG) meeting.  Pennsylvania has a new integrated planning body that includes both HIV prevention (for all counties except Philadelphia) and HIV care (for the whole state).  This overlaps with our local care planning for the five counties in Southeastern PA.  You can read a little more about this, plus get the meeting schedule, on the PA HPG's website.




PA HPG meetings take place outside of Harrisburg.
Photo Credit: JasonTromm via Compfight cc

Members of the PA state HPG are from all over Pennsylvania, so the group conducts its business over the course of two-day meetings held every other month.  This cuts back on travel time and expenses, and gives the group a lot more time to work together.  These meetings include sessions with the entire body, as well as smaller breakout task groups each day to dive into meatier issues.  I live-tweeted the PA HPG meeting. If you're interested in a play-by-play, you can search hashtag #PAHPG over on Twitter.

The first day started off with reports back from each of the three task groups: one that deals with membership issues, another dealing with priority setting and resource allocations, and a third that plans needs assessments.  Note: This structure will shift in January, but that's what it looks like for now.
 
After updates, we broke into task groups.  I sat in with the priority setting and resource allocation group on the first day.  Their requirements are a little bit different from what I'm usually involved with, because the care funding comes through Ryan White Part B.  For Part A funding (what we get in the Philadelphia Eligible Metropolitan Area, or EMA), the planning body is required to both set service priorities and allocate/budget money for these services.  (You can get a refresher on the Philadelphia EMA Part A process here.)  On the state, Part B level, the planning body does not have to make the budget, so the task group focused largely on the priority setting process.  They had an extensive conversation on the type of data and information the PA HPG would need in order to make its decisions, planning out almost a year's worth of presentations.  They also briefly discussed the process itself, which will have some parallels to the Philadelphia EMA's process.
 
Later on, the whole PA HPG reconvened to talk about their new protocols, which were similar to what we call bylaws for our planning bodies here.  HPG members were asked to review the protocols for changes.  The HPG also got an introduction to the three new HIV data managers at the Department of Health.  These new positions include one data manager each for care, prevention, and the Special Pharmaceutical Benefits Program (SPBP). 
 
Last on the HPG's agenda was concurrence for the statewide HIV prevention 2013 interim progress report and 2014 grant application.  This document gets sent to the CDC, and the CDC then uses the document to decide how much prevention money the state will receive.  It includes changes, successes, and challenges to prevention services and the planning process itself.  It also includes special projects and relatively detailed budgets.  The document is 62 pages long, with around 72 pages of appendices.  I actually read the whole thing - the most notable part for me was about a special demonstration project called Project Silk.  Project Silk is a drop-in program geared toward minority LGBTQ ball youth in Pittsburgh, and has had some pretty remarkable results.  They've managed to reach a challenging population, and they are using a peer navigator program.  I'm looking forward to hearing more about the project at future meetings.  The PA HPG did ultimately concur (or agree with) the application after hearing a very thorough presentation, and that was the last item on the first day's agenda.

Day two was much shorter, and we broke almost immediately into task groups.  On the second day, I decided to move over to the needs assessment group.  If you're not familiar with the term "needs assessments," it just refers to ways that we can figure out what people need, like surveys, focus groups, town hall meetings, and other similar activities.  The task group wants to look particularly at people who are "late-testers," meaning that they aren't diagnosed with HIV until they're already sick, so they're diagnosed with AIDS at the same time.  They also want to find out more about provider capacity - essentially, whether the providers have room for more clients.  Plus they're planning to gather as much data as possible from sources like SPBP and partner services to help them plan their needs assessments.  We're going to be sharing our data with them to help with this process.

Later on, the whole PA HPG got back together for task group reports.  While I was with the needs assessment group, the priority setting and resource allocation task group continued talking about the tool in the context of the whole process.  They also further refined their presentation schedule for 2014, and talked about having a more unified priority setting process that would get input from many local consumer groups.  I offered to speak with our own Positive Committee about the process when they had more information.  Then we heard from the membership task group, which plans to have an ongoing orientation process that includes mentorship.  They requested that the Department of Health have the application materials translated into Spanish.  They're also looking for more HIV-positive consumer members.



The new Kenneth McGarvey fashion line


Last on the agenda was the final approval of the HPG protocols, including any updates.  Once that was taken care of, there was a small surprise.  Ken McGarvey, the director of the HIV/AIDS Division of the PA Department of Health (DOH), created a model of the care continuum that pops its head into many of the DOH's documents.  At the end of the meeting, there were surprise t-shirts immortalizing the famous "McGarvey HIV Service Model."

A steering committee meeting followed the main meeting, but it was time for me to head back to Philadelphia.  I'm looking forward to attending the next PA HPG meeting, and excited for increased collaboration between our planning bodies and the PA statewide group!