Dave's AIDS Ride

This post of an excerpt from an article that was previously published in April 2002, in European AIDS Ride News.

Tell us about your first AIDS Ride.

During the first 50 miles of that first Ride, I cycled behind a Positive Pedaler – and I cried the whole time. I realized that I was only out about my status with select people, even though I did public speaking about HIV/AIDS to schools. I knew I didn’t want to send the message that I was proud because I was HIV-positive, but rather that I’m proud of who I am. And being HIV-positive is a part of that.

What have you learned about living with HIV, especially after two decades.

I’ve learned to listen to and read my body. When I’m tired, for example, I know I need more iron, so I eat foods rich in that. I treat myself with naturopathic methods and have a holistic approach. I’ve become a vegetarian, I don’t drink or smoke, and I exercise – cycling gives me plenty- along with regular strength training. I did take AZT for three years, but I felt it was tearing my body down. I think medications are important to prolong lives, however, and I will take them if they are indicated – but not until that point would come.

Tell us about John, your lover who died from AIDS.

He died in 1990 at the age of 40. We were together for ten years. John was very high-energy workout kind of guy. He loved life, and he loved to spoil his kids – he had two daughters. I’ve kept on a stepfather ever since. I try to fill the gap where he left off. After he died I created an organization that helps families navigate the medical system so they won’t have the same hassles we did. That operated until the mid-1990’s.

Got a Ribbon?

This post was provided by Pastor Andrena Ingram. You can find the original version of this post and more at her website, http://www.andrenaingram.org/.

 

Here we go again: World AIDS Day 2012, coming right up! Time to dig those ribbons out of your drawers and closets and jewelry boxes! Don't have one? Not to worry, wherever you decide to celebrate WAD, I'm sure they'll have some ribbons. Just make sure you save them this time ... so this time next year, you'll be ready!

 

I've lived through 23 years of World AIDS Days! I was diagnosed that many years ago, and yes, I am still here. It took a few years to get comfortable with the diagnosis, a few years to get past the stigma I initially placed upon myself, a few years to get past the stigma placed upon me by others.

As you can see from this picture taken in Toronto, Canada, in 2006 at the International AIDS Conference, it was at this event that I began coming out, yelling and making noise, where I confronted my own stigma, and found support in the 20-some-odd thousand other positive people at the event. It was monumental!

I am past the stigma, when it comes to my own personal HIV.

However, I am NOT past the stigma others are going through. I am NOT past the stigma which keeps people living in shame, secrecy and fear.

I made a promise at this conference that I would begin speaking out, and do everything I could to raise awareness about this disease, particularly when it comes to breaking down the walls of stigma.

I break down the walls of stigma, shame and silence, one face at a time. My face particularly "affects" some persons, because I am a religious leader.

I am an ordained Lutheran pastor, living openly, unashamedly and POSITIVELY with HIV. I am an activist in the HIV arena, and "God's change agent" ... putting my face in the mix, to humanize this disease, so that others who are living in fear, shame and secrecy may come to know that you can live with this disease!

Are you still keeping the promise???

Many have traveled this road before us, many have ACTed UP in the streets, have taken their fight to the lawns of the White House. Have DIED, fighting to the very end. It has been 30 years, and while major medicinal breakthroughs have been made ... there is still much work to be done. Like a cure!

I am grateful for my life. I look good and most days I feel good. But you are looking at me from the outside. Inside, I don't always feel that great. Fatigue takes its toll on me. I talk, and I talk. I share and I share. But there are a few things that still bother me:

The church bothers me. I am not talking about the churches that are doing what they need to do for their congregants, but for the community at large, especially for those who are NOT churched in the traditional manner.

I take issue with houses of God that pass moral judgment on those living with HIV.
I take issue with pastors who do not know that one of their members has been living and died from complications due to advanced HIV, because the parishioner was afraid to tell, for fear of being shunned.
I take issue with houses of God that talk about repentance of sins in the midst of someone's struggling to find their way back to the God who knows all, and forgives all.
I take issue with houses of God that wear rubber gloves to anoint the head of someone living with HIV.
I take issue with congregations who treat someone with HIV any differently than anyone else.
I take issue with churches who condemn the sexual orientation of another.
I take issue with those who are NOT living with this disease, but who are sitting at the tables and doing all the talking and decision-making.

And here's a new one: people in 12 step programs, talking about and judging and spreading rumors about folks with HIV! In the rooms! A space where you are supposed to feel safe -- what you hear here, when you leave here, let it stay here (one of the principal tenets). To say I am appalled is an understatement!

"Let he who is without sin, cast the first stone" -- John 8:7 (I know I can't cast that stone. I am not without sin.)

And so, here we are 30 years later. Getting ready to go into another World AIDS Day. This one is themed "Getting to Zero."

I pray the faith leaders* can get to zero, when it comes to how we are being treated. I pray the faith leaders can get to zero, when it comes to placing blame and shame. I pray the faith leaders can get to zero, when it comes to pontificating and throwing theology around.

We who are living with HIV and "advanced" HIV have our own HIV-ology: We are tired of being nailed to the cross, we are tired of being "poked in the side," we are tired of the crowd screaming at us ... It's time for our resurrection back into society as whole people.

And another thing: I'm tired of the ribbons. We see them every couple of months, depending upon the demographic we are praying for. The ribbons come out from wherever they have been put away the previous year, they are pinned on our lapels or robes, we attend an HIV service, bow our heads and "feel for the HIV community" ... When they get home they take their ribbons off ... and put them away for next year.

Don't get me wrong, World AIDS Day has its place, but dang! Isn't 24 years of World AIDS Day Services long enough? Isn't 30 years of this disease long enough?

With the advent of new medications, I feel the passion has gone out of the fight against HIV. People feel like it is a manageable disease these days, and it may well be so. I know I am managing. I am living. What I don't know, and what people who are not living with this disease do not know or understand, is the havoc the medications wreak on our insides. Medication is keeping us alive. But you know what? I am tired of taking pills ... and I am tired of wearing ribbons ... and I am tired of World AIDS Day!

So ... what will you be doing, this World AIDS Day?

I am sure I'll be speaking somewhere. Again.

... Gotta find my ribbon. I know it's here somewhere. ... Wait a minute. I AM the ribbon!

Celebrating Philadelphia's HIV Community

The HIV community is vibrant and varied.  It includes advocates, researchers, social workers, innovators, survivors, leaders, activists, protectors and defenders.  They face seemingly insurmountable challenges with courage and determination.  Most of them are never acknowledged for their work.  The Poz 100 addresses this on a national level.

In recognition of World AIDS Day, we would like to celebrate our area’s HIV community.  We are collecting reflections, interviews, and stories from the people that made history and will shape our future.  Your voice is important, and we want to hear from you.  You can participate by submitting an original blog post to hivphillywebmaster@gmail.com or completing a brief online interview questionnaire at http://tinyurl.com/d37dbzs.  Share a link to the blog with your friends and colleagues, and click “join this site” at the top right of this page.

We will post at least one new story each day for the month of December.  We’ve already got four awesome and inspiring posts lined up from people who prevailed when the world didn’t expect them to survive. 

Come back tomorrow to see our first post from someone who really practices what she preaches.

Map of Philadelphia HIV/AIDS Epidemic

The map shows the number of HIV cases by census tract (division of population used by the US Census Bureau).  This map is a part of the 2011 geographical risk analysis, which examined what community factors (crime, death rates, income, etc.) were associated with areas of high concentration of HIV/AIDS.  This analysis was done to determine where HIV prevention and care services are most needed. An explanation follows the map.

Map 1:  Number of Persons Living with HIV/AIDS in Philadelphia by Census Tracts and Neighborhoods

The strongest and most significant predictors of people living with HIV/AIDS (PLWHA) rates in Philadelphia (in order of significance) are:

1.       Neighborhood instability (areas with high numbers of demolished buildings or vacant properties, or with homes with discontinued water service)

2.       Crime rates related to drugs and/or sex;

3.       Socio-economic status (SES); and

4.       Personal crime rate (robberies and aggravated assaults)

Based on our analysis, high risk census tracts in Philadelphia are, therefore, predominately unstable, high crime, and low socio-economic status (SES) areas of the city.  Sixty-six census tracts in Philadelphia, or 17% of all tracts, are identified as high risk and high PLWHA areas, and ten census tracts are identified as very high risk with correspondingly high PLWHA rates. 

The neighborhood which contains the highest number of these tracts, and so is considered at the highest risk in the City, is Sharswood-Stanton in Lower North Philadelphia.  This is followed by Millcreek-Parkside, Strawberry Mansion, Poplar-Temple, Nicetown-Tioga and Hunting Park-Fairhill. 

There are, however, a number of census tracts that do not follow the general patterns found; some areas may have low rates of people living with HIV/AIDS (PLWHA) while they appear to be areas of high risk, while others may have high PLWHA rates in otherwise fairly low risk areas of the city.  Areas with high PLWHA and low risk are usually characterized by middle to upper-level socio-economic status with fewer Black residents, lower crime and relatively stable census tracts.  Most of these areas are near, or in, Center City. Factors unique to Center City make this area an outlier in terms of the risk analysis, while characterized with a high rate of PLWHA. 

Areas with low rates of PLWHA but very high risk indicators include areas within Paschall-Kingsessing, Upper-Kensington and Haddington-Overbrook neighborhoods. These tracts have very high risk levels, but lower PLWHA rates than other tracts with the same risk levels.  This analysis could not determine any neighborhood-level protective factors that contributed to lower rates of PLWHA but perhaps future research might provide some insight.

So what do you think?

Why do you think the map looks like it does?  Why is HIV concentrated in high risk communities?  Why is Center City unusual, in that there are high rates of people living with HIV/AIDS but the census tracts are considered ‘low risk’? Does the map match your experiences or observations?

We want to hear from you.  Share your knowledge and experiences to give context and meaning to this map.

What is the RWPC?

Have you been wondering what on earth this "Planning Council" is? Watch this short Prezi and find out!

What is the RWPC? on Prezi

2012 Ryan White Allocations

Every year, the Philadelphia EMA Ryan White Planning Council (RWPC) hosts three Allocations meetings for each region in the Eligible Metropolitan Area (EMA) to plan its budget for the next year. One meeting is for the New Jersey counties (Salem, Camden, Gloucester, and Burlington), one is for the PA suburban counties (Bucks, Chester, Montgomery, and Delaware), and the third is for Philadelphia County. Each region receives a portion of the total EMA's funding that reflects their share of the HIV/AIDS epidemic, based on the most recent data available.

At the Allocations meetings, each region makes a plan for how they would spend their portion of the funding if the EMA received the same amount of money as last year, if they received a 5% decrease in funding, and if they received a 10% increase in funding. These plans are for the fiscal year that begins on March 1 of the next year. Each region can also make instructions to the grantee (the AIDS Activities Coordinating Office, or AACO) at its meeting.

After these three meetings, the Finance Committee of the Ryan White Planning Council (RWPC) meets to review each region's plan, including any instructions to the grantee. The Finance Committee can choose to recommend, recommend against, or make no recommendation on these plans (although the Finance Committee almost always recommends the regional plans with no changes). The Finance Committee then presents the allocations plans from all three regions to the RWPC, who then votes on the plans and the instructions to the grantee.

The allocations plans for next year were based on the 2009 number of living HIV/AIDS cases in each region. Based on this data, the PA suburban counties represent 14.20% of living HIV/AIDS cases in the EMA, while the New Jersey counties represent 10.55% of cases and Philadelphia represents 75.25%. These shifts provided the starting point for each region's decision-making.

Here's the breakdown for each region.

Philadelphia
Level-funding budget: Philadelphia chose to keep all services funded at the same levels in the case of level funding.

5% decrease budget: Philadelphia chose to spread a 5% decrease proportionally across all service categories (based on their level-funding budget).

10% increase budget: Philadelphia chose to give core service categories a 9% increase (based on their level-funding budget), while giving supportive service categories an additional 1% increase on top of their other 10% increase.

Instructions to the grantee: Philadelphia instructed the grantee to provide utilization data (to the Comprehensive Planning Committee) and expenditure data (to the Finance Committee) for the current and previous fiscal years. Philadelphia also instructed the grantee to clarify whether there were any organizations that provided treatment adherence services, but did not provide medical case management services.

PA Suburban Counties

Level-funding budget: The PA suburban counties chose to keep all services funded at the same levels in the case of level funding.

5% decrease budget: The PA suburban counties chose to spread a 5% decrease proportionally across all service categories (based on their level-funding budget).

10% increase budget: The PA suburban counties chose to spread a proportional increase across all service categories with the exception of transportation and drug reimbursement (based on their level-funding budget), because these categories had been underspent. They instructed the amount of the increase that would otherwise go to transportation and drug reimbursement (approximately $53,746) be placed into other categories as follows:

• 25% into medical case management


• 25% into ambulatory care


• 50% spread across all remaining service categories

Instructions to the grantee: The PA suburban counties instructed the grantee to analyze outreach services in Chester city, with the results reported to the Comprehensive Planning Committee.

New Jersey Counties
Level-funding budget: The New Jersey counties chose to move funding from food bank/home-delivered meals (leaving a $5 placeholder) into state ADAP, as there were no providers currently able to provide food bank/home-delivered meals and the state ADAP program had received cuts.

5% decrease budget: The New Jersey counties chose to spread a 5% decrease proportionally across all service categories (based on their level-funding budget).

10% increase budget: The New Jersey counties chose to spread a 10% increase proportionally across all service categories (based on their level-funding budget).

Instructions to the grantee: The New Jersey counties instructed the grantee to review the efficacy of the medical case management model (to be reported to the Comprehensive Planning Committee), and to possibly expand the model to include triage.

2011 Town Hall Tour is about to begin!

Are you HIV-positive? Do you have something to say about your HIV services - good, bad, or ugly? Our annual town halls will be kicking off tomorrow! Now is the time to speak up about your services. Your input is very important.

Dates/locations are listed below. Please RSVP to the phone numbers provided so we can plan accordingly!

Philadelphia Town Hall
Tuesday, April 12 from 12 p.m. - 3 p.m.
Action AIDS
1216 Arch Street, 6th Floor
Philadelphia, PA
RSVP to 215-981-3337

Delaware County Town Hall
Wednesday, April 13 from 10 a.m. - 12 p.m.
Delaware County Intermediate Unit
200 Yale Avenue
Morton, PA
RSVP to 610-566-7540

Southern New Jersey Town Hall
Friday, April 29 from 11 a.m. - 2 p.m.
Dooley House
2825 Concord Avenue
Camden, NJ
RSVP to 215-574-6760