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. 

ICYMI The Positive Committee newsletter is back!

The Positive Committee launched the revamped newsletter in August. You can get your copy here. 

Inside you will find everything you need to know to be a member of the Positive Committee and to come to your first meeting of the Planning Council (the Philadelphia HIV Integrated Planning Council). In addition to all that handy information about community planning, you will also find resources for returning citizens and food resources like food banks and food vouchers. The Positive Committee decided to feature food and re-entry resources because of questions and experiences brought up at meetings over the summer. The newsletter’s purpose is to share information about the Planning Council and help people living with HIV get the resources they need.

The next issue of the newsletter will be out later this fall. If you have a question about HIV-related services or health that you think would be a good topic for the newsletter, send us an email. Or better yet, come to the next Positive Committee meeting. You can check out our meeting calendar here.

#HIVTalkBack - we're listening!

It's survey time again!

Every 5 years or so, the Planning Council sends out a survey to our nine-county area's Ryan White clients. The survey asks questions about challenges getting medical care, HIV history, basic demographics, and what things people need but aren't getting. All of this information is used by both the Planning Council and the AIDS Activities Coordinating Office (AACO) to plan the HIV care and prevention services for the region. It's a big deal.

Our goal is to distribute 3000 surveys to individual clients, through the assistance of Ryan White providers. Asking providers to mail the surveys to clients is the best way to protect confidentiality and keep the surveys anonymous. The Office of HIV Planning provides everything providers need: surveys, envelopes, postage, and incentives for the individuals. The surveys get mailed back to the Office of HIV Planning in a postage paid envelope. We analyze the data in-house and keep everything secure.

This year we also have an online survey in both English and Spanish. We need your help getting the word out. We have designed flyers and social media messages - all you have to do is post them or share them. 

Our online survey is going to launch next week on World AIDS Day. 

Look out for our announcement via email and social media (Twitter and Facebook) at #HIVTalkBack. Please retweet, share, and forward to your friends and colleagues. We want to reach as many of our region's HIV+ people as possible. We can't do that without you.

Big Picture - April & May

This post is part of a monthly series that summarizes what's been going on in the Ryan White Planning Council, HIV Prevention Planning Group, and their subcommittees. To view meeting materials and presentations, please visit www.hivphilly.org or check out our SlideShare account.

Spring has been busy here at the Office of HIV Planning! We moved to our new office on the 3^rd floor of the building, in Suite 320. With all the difficulty of moving, we missed April’s Big Picture post, so we’ll cover both April and May here.

Finance Committee (May 12^th):

The Philadelphia EMA received a $162,000 increase in their Ryan White Part A funding this year. The Finance Committee looked over and approved budgets for Philadelphia, the PA suburban counties, and NJ. Because of HRSA Policy Clarification 16-02, the EMA’s emergency medication program cannot be funded the same way anymore.  Money to support the program was moved from the Local Pharmaceutical Assistance Program (LPAP) to Direct Emergency Financial Assistance (DEFA). Representatives from the AIDS Activities Coordinating Office (AACO) also requested that the Planning Council move $84,000 from LPAP to referral for healthcare and supportive services.

Ryan White Part A grant allocations meetings for the fiscal year 2017 will be held in June. The Pennsylvania allocations meeting will be June 14^th, Philadelphia will be on June 16^th, and NJ on June 21^st. The meetings will run from 1-4pm.

Needs Assessment Committee (April 11^th):

The results of the Needs Assessment Committee’s transportation survey are in. Case managers who responded to the survey talked about common issues with getting clients to and from medical appointments. Logisticare and SEPTA tokens were mentioned in a lot of the responses. The committee plans to look into issues with Logisticare and will possibly write a transportation resource list for case managers.

New Member Orientation/Nominations Committee (April 14^th & May 19^th):

The Planning Council welcomed 4 new members in April. They were invited to attend an orientation, where they learned about their responsibilities as Planning Council members. Debbie also gave an overview of the Ryan White Part A planning process.

In May, the Nominations Committee looked over Planning Council attendance. They’ll follow up with members who have attendance issues. They also reviewed the attendance policy. Members who have 3 unexcused absences or miss 5 meetings in a calendar year may be removed from the Planning Council. Anyone with a circumstance that keeps them from coming to meetings (for instance, an illness) should contact the office. Members should also try to arrive to meetings on time.

Ryan White Planning Council (April 14^th & May 19^th):

April: Evelyn Torres and Sebastian Branca from AACO gave a presentation on AACO’s Client Services Unit (CSU) at a joint meeting with the HIV Prevention Planning Group. The CSU helps to get people with HIV into case management and other services. AACO’s Health Information Helpline (1-800-985-2437) also provides information to callers from 8am-6pm Monday through Friday. Sebastian talked about the ways AACO follows up with HIV service organizations to see well they’re doing.  AACO uses data to see which organizations need help to improve their performance, and then helps organizations make plans for how they’ll do better.

May: The Finance Committee presented the budget for this year’s Ryan White Part A grant. The Planning Council voted to approve the budget, along with the grantee’s request to move $84,000 from LPAP to referral for healthcare and supportive services.

Positive Committee (May 9^th):

Antonio gave the Positive Committee a presentation on the 2015 Youth Risk Behavior Survey (YRBS). Philadelphia public high school students were asked about tobacco use, alcohol and drug use, body weight and activity, sex, and violence. You can see more information on Antonio’s slides here.

Nicole told the group about the OHP’s focus groups with high-risk heterosexuals. Participants in the focus groups talked about their experiences with healthcare in Philadelphia. You can read Nicole’s slides here. Also check out her full report along with her recent blog post, where she talks more about what she learned from the focus groups.

Comp Planning (April 21^st & May 26^th):

April: Nicole also gave her focus group presentation to the Comprehensive Planning Committee.

The Comprehensive Planning Committee looked over the Needs Assessment Committee’s transportation survey results. They agreed to brainstorm and work together with Needs Assessment on transportation issues.

The use of opioid medications and heroin is a huge problem in Philadelphia. Overdose deaths are on the rise. Hepatitis C rates among heroin users are also skyrocketing. The Comprehensive Planning Committee will continue to discuss the opioid epidemic at future meetings.

May: The Comprehensive Planning Committee has talked about a retention navigation program, transportation, housing, and health insurance premium cost-sharing over the last year. They asked AACO to look into a health insurance premium cost-sharing program for the Philadelphia EMA. The Positive Committee will address transportation at their next meeting. The Comprehensive Planning Committee will bring up the retention navigation model at this month’s Finance Committee and allocations meetings. The Planning Council will ultimately decide whether to fund the program.

HPG (April 27^th):

Kathleen Brady, AACO’s medical director, gave her annual report on the HIV epidemic in Philadelphia. The National HIV/AIDS Strategy and the HIV Care Continuum were an important focus of her presentation. See Kathleen’s slides for more information.

We hope to see you all at June’s allocations meetings!

Want to get involved? To learn more, follow the links in this post, attend one of the meetings listed on our calendar, or email info@hivphilly.org. If you have questions, you can also call us at 215-574-6760.

8 ways to improve health care for adult heterosexuals

In November 2014, the Office of HIV Planning held focus groups with adult heterosexuals. The groups discussed the men’s and women’s experiences with health care, their ideal health care experience, and HIV testing in Philadelphia.  The full analysis and recommendations can be found here.

A low perception of HIV risk persists among heterosexuals in Philadelphia, despite the fact that there are almost equal numbers of heterosexuals living with HIV/AIDS (3,153) as men who have sex with men (3,140). However in recent years, diagnoses of HIV among heterosexuals have been decreasing in Philadelphia, from 316 in 2010 to 254 in 2014. Despite declining numbers of new infections in the overall heterosexual population, racial disparities among heterosexuals are stark. In 2014, there were 5,105 Black heterosexuals living with HIV/AIDS in Philly, 8 times as many as Whites (612) and 5 times as many as Hispanics (985). In 2014, there were 4,026 Black women living with HIV/AIDS, 7 times more than White women and 5 times more than Hispanic women.

According to the CDC, sexual risk among heterosexuals is quite common, including unprotected anal and vaginal intercourse and recent diagnosis of sexually transmitted infections. Many people have high-risk sex but do not recognize their own risk. In Philadelphia, 82% of men in the National HIV Behavioral Surveillance System sample had vaginal sex without a condom and 36% had anal sex without a condom in the previous year. For the women in the same sample, 86% had vaginal sex without a condom and 21% had anal sex without a condom in the previous year.

Racial disparities in HIV infection rates are not due to behavior alone. Powerful social factors like poverty, gender inequality, racial segregation and discrimination, and gender norms drive the epidemic in African American and other minority communities. Geography and racial segregation matter because people tend to socialize with people similar to themselves. This is a major factor in how HIV is concentrated in certain geographic and cultural communities. When examined geographically, areas with significant numbers of people living with HIV/AIDS are often areas with concentrated poverty and minority populations.

One of the major themes of the focus group discussions was how trauma impacts individual’s access to and comfort with medical care. Trauma is prevalent among many of the same communities that are most at risk for HIV including those in this report: women of color, African American men, especially those who have experienced homelessness and incarceration. The effects of trauma on health are varied. Trauma may cause healthcare avoidance, particularly for survivors of intimate partner violence. Health exams can be invasive and trigger traumatic responses, because of feeling a lack of control over one’s body. Evidence is growing that trauma negatively impacts immune function.  Trauma is associated with poorer metal health, substance abuse, ART adherence and immunologic outcomes.

 The following recommendations are based on the experiences and opinions of the focus group participants as well as the current literature and epidemiological data in Philadelphia (see full report for all references). These recommendations seek to address health disparities and decrease the number of new HIV cases in Philadelphia.

1. Trauma-informed care should be the standard of care. Considering the pervasive experiences of trauma for men and women of low socio-economic status (childhood and adult), all healthcare settings should work towards a trauma-informed culture.

2. Sexual and reproductive health care must be trauma-informed. All women should be screened for current intimate partner violence, as well as childhood and past sexual and emotional abuse. Appropriate referrals should be made for mental health and social support services.

3. Honor and maintain a patient’s dignity in all care settings. Patients who feel they are treated with dignity and are active participants in healthcare decision-making are more likely to adhere to treatment and trust their medical provider.

4. Holistic care that includes services for mental and physical health is essential for long-term health and continued engagement in primary and HIV care. Social support should be integrated into all health care settings, whether through case management, navigation services or peer support. Service providers should consider incorporation of childcare and respite services in services targeted to women, considering their caregiving responsibilities.

5. Continue and expand current efforts to make HIV testing routine in all primary care.  Efforts should ensure routine screenings are happening in communities where HIV is most prevalent. Routine testing doesn’t rely on patient disclosure or recognition of HIV risk behaviors and will increase the likelihood that individuals are diagnosed and linked to care in a timely matter.

6. Include information about PrEP during pre- and/or post- test HIV counseling services. Individuals who test HIV-negative (for whom PrEP is appropriate) should receive information about where and how to access PrEP and provided with relevant referrals.

7. Community-level campaigns to raise awareness about HIV risk and prevention in the Black and Latino communities are needed. The campaigns should be broadly marketed to all members of the Black and Latino communities, not just to individuals of a certain risk profile or class. Local community leaders should be the messengers of the campaign.

      8. Provide adult health education in community settings to improve health literacy to decrease health disparities. Programs should include information about sexual health and HIV/STI prevention, hygiene, nutrition, sleep, and the importance of health screenings. Specific interventions should focus on the health needs of Black men. 

Big Picture - March 2016

This post is part of a monthly series that summarizes what's been going on in the Ryan White Planning Council, HIV Prevention Planning Group, and their subcommittees. To view meeting materials and presentations, please visit www.hivphilly.org or check out our SlideShare account.

Finance Committee

HRSA’s Policy Clarification 16-02 sets rules about what can be funded by Ryan White. The clarification changes how the EMA can fund local AIDS pharmaceutical assistance. It also means the EMA can now fund syringe access programs.

The Finance Committee voted to approve a reallocation request from the AIDS Activities Coordinating Office (AACO). AACO representatives asked that money be moved from Medical Case Management to Information and Referral Services to support the Health Information Helpline. They said the change would not affect case management services.

Integrated Executive Committee

The Co-Chairs of the Planning Council, HPG, and their committees met to discuss areas where they can work together, including the Integrated Plan. They talked about HIV stigma and HIV testing. They also agreed to invite a presenter on trauma-informed care in the future. The Positive Committee will discuss Medicare/Medicaid and peer support programs.

Ryan White Planning Council

The Planning Council approved the Finance Committee’s request to reallocate money from Case Management to Information and Referral Services.

Positive Committee

David Griffith from the LGBT Elder Initiative discussed some upcoming events about HIV and Aging. You can find more information on the LGBTEI website.

The Positive Committee had a conversation about Medicare and Medicaid. They’re hoping to bring in a speaker to talk about Medicaid in the future. They’ll also be discussing Peer Support programs at their next meeting.

Comp Planning

The Comp Planning Committee looked through information about marketplace insurance programs. They also reviewed data on insured and uninsured people living with HIV and AIDS in Philadelphia. Updated insurance information will be available soon. The Committee is going to continue discussing a Health Insurance Premium Cost-Sharing program after they see more data.

They also finished their conversation on Housing as it affects health. Many people living with HIV and AIDS in Philadelphia need housing and can’t get it. Increased funding for housing may help shorten the waiting list for HIV/AIDS housing programs.

Needs Assessment Committee

The Needs Assessment Committee’s transportation survey got sent out to providers in early March. The survey has received a lot of responses already. Some providers said that they have issues with Logisticare. Some patients do not receive their day passes on time, or their rides do not arrive on schedule. Some people also have issues getting SEPTA tokens.

HPG

Dr. Anne Frankel from Temple University and Judith Peters from the Philadelphia School Board came to talk about last year’s Youth Risk Behavior Survey (YRBS). The survey asks high school students about smoking; drinking and drug use; weight, nutrition, and activity; sex; violence; and mental health. You can find slides from their presentation here.

Nominations Committee

The Nominations Committee reviewed applications for Planning Council membership. The Planning Council welcomes 4 new members! New Member Orientation will be held April 14^th from 11am-2pm. Current Planning Council members can stop by orientation around 1pm to talk about their committees.

Want to get involved? To learn more, follow the links in this post, attend one of the meetings listed on our calendar, or email info@hivphilly.org. If you have questions, you can also call us at 215-574-6760.

Big Picture - February 2016

This post is part of a monthly series that summarizes what's been going on in the Ryan White Planning Council, HIV Prevention Planning Group, and their subcommittees. To view meeting materials and presentations, please visit www.hivphilly.org or check out our SlideShare account.

Finance Committee

The Finance Committee approved a request from the AIDS Activities Coordinating Office (AACO) to move $33,000 in the PA suburban counties from Mental Health and Transportation to Dental. This year’s Ryan White Part A grant award has not been received yet. However, the Finance Committee approved a temporary level funding budget.

Positive Committee

The Positive Committee watched a Vice Magazine documentary on PrEP. You can see it for yourself here. 

Needs Assessment Committee

The Needs Assessment Committee did a test run of their transportation survey. It will be distributed to providers in March.

Ryan White Planning Council

On behalf of AACO, the Finance Committee asked the Planning Council to approve the $33,000 shift to Dental in the PA counties. They also presented the level funding budget. The Planning Council voted to approve both.

Planning Council Social!

The Planning Council had their annual social after the February meeting. I hope everyone had a great time. We ate snacks, gave out some door prizes, and got to know each other better. Thanks to all the Planning Council members and guests who showed up. Here’s a few pictures from the event, courtesy of Planning Council member Ed Campbell.

Comp Planning

HRSA recently put out a Ryan White Policy Clarification. The document defines what can and can’t be funded under Ryan White. You can read it here.

The Comp Planning Committee talked about 5 categories that will be affected by the policy clarification: Local AIDS Pharmaceutical Assistance, Non-Medical Case Management, Housing Assistance, Health Insurance Premium Cost-Sharing, and Syringe Access. The committee is going to start working on a Health Insurance Premium Cost-Sharing assistance program over the next few months.

HPG

Nicole did a report on 2014’s focus groups for heterosexuals at high risk of HIV. The participants talked about their positive and negative experiences with health care. They also made recommendations for how health care could be improved. Nicole will release a full report on the focus groups in March.

Antonio gave a presentation on PrEP. He went through PrEP campaigns from across the country. The best PrEP marketing campaigns used pictures that people could relate to. Their websites were simple and avoided listing too much information.

The HPG did an activity where they brainstormed their ideal service system. Some topics they brought up were routine HIV testing, syringe exchange, and decriminalization of drug use and sex work. The Ryan White Planning Council and HPG Co-Chairs will talk about these topics at the Integrated Executive Committee meeting later this month.

Tiffany Dominique talked about the recent Bench to Bus Stop Conference, held at the Mutter Museum on January 26^th. The conference promoted networking and encouraged health department representatives and researchers to work together on future projects.

Want to get involved? To learn more, follow the links in this post, attend one of the meetings listed on our calendar, or email info@hivphilly.org. If you have questions, you can also call us at 215-574-6760.