At 9:00 AM Saturday morning I left the peace and tranquility of Saratoga Springs, New York, just having participated in an annual tradition of attending opening day at Saratoga Thoroughbred Raceway and headed down the northway toward Albany Airport. From there I was to board a plane for Washington DC to attend my very first International AIDS Conference.
Although I was thoroughly excited about the prospects of what I was to learn from the multitude of plenary sessions being offered over the coming 6 days, there was a bit of trepidation concerning my first stay at a DC area hostil.
When I first arrived and walked into my room mid-afternoon I realized I would be sharing space with 9 other gentleman from possibly all over the world. Having spent a few years in a college dorm, this arrangement was not foreign to me, but it felt like we were packed together like sardines.
After settling into my little corner of the world I headed over to the convention center to get registered and get acquainted with the conference venue, especially a section called the Global Village, which based upon information supplied by the AIDS 2012 website, seemed as though it would have plenty to offer.
As I made my way over I placed a call to my wife to provide her with my first impressions of the hostil. Although I admit I was a bit leery of this new living arrangement, secure in my firm belief in the principles of the Celestine Prophecy (ie. everything happens for a reason), I assured my wife that I would embrace the challenge to find out why.
The conference center was massive in size, but the scope of the exhibits, informational booths, and meeting rooms positioned over 4 floors led me to believe the expanse of knowledge to be absorbed was even greater than the expanse of space.
After getting myself acquainted with the venue the one thing I promised myself I would take in while I was in DC was the Names Project AIDS Memorial Quilt display in the National Mall area. I wanted to find the panel made to memorialize Joanne, my former fiance, and the other members of our early 90’s support group SOLIDARITY, that we survivors presented back in 1995. Unfortunately, with light rain falling in our nations capital, the Quilt remained in it’s containers and my moment of remembrance would have to wait for another day.
The one drawback to my living arrangement was realized when I went to bed that night. It has been quite a while since this 60 plus year old man had to climb up a ladder to enter a top bunk, and lets just say the vision and exercise were not pretty. Thank God a usual night time trip to the bathroom in a pitch dark room was not warranted.
Sunday morning I entered the cafeteria and was immediately greeted by John, DC Hostiles official greeter , who asks you to earn your breakfast by saying good morning to him in any language other than your own. More importantly, however, was John’s encouragement to meet the other quests at your table.
And it was truly then that I realized one of the reasons why I was staying here, and more importantly, what I should be doing each morning while I’m here having breakfast.
That first morning I met Becky from England, who believe it or not , had chose to leave her native country in the midst of hosting the Olympics, to volunteer with CAMP AMERICA, helping disabled American children enjoy a month a summer camp. Becky made me realize that my inquisitive nature could thrive in this setting and learn from others living with my disease how they gain access to care and treatment in their particular state or country.
My first encounters were with Hildi of Finland and Maria and Theresa from Spain.All three of these women have easy access to care because each lives in a country with universal health care coverage. And only due to the recent European financial crisis have Maria & Theresa been asked to make co-insurance payments based upon a percentage of their current salary. According to both, the co-pays are well within their means. According to these young ladies coverage for all citizens is provided through a tax all residents must pay into the government.
I spent the greatest amount of time though with Hildi who intrigued me immediately with her answer to how her country pays for her HIV?AIDS services. In Finland, AIDS service organizations are funded by percentages of the gambling revenues taken in by casino’s around the country. That percentage is distributed to an association who decides how much funding specific AIDS organizations are able to receive toward supportive services, such as transportation,mental health and support group services. and
case management.
Hildi has been infected since 1993, was on AZT for a year improving her CD 4 counts from 280 to over 800. however after moving to England for a year without meds she returned to Finland as sick as ever with CD 4 below 250. Although she is much better now, and has had 3 non-infected children, she has not felt well enough to go back to work full time. She is presently living on Finland’s answer to our social security disability system called PENSION. However she does work part time as a peer educator for HIV FINLAND, an organization she receives all of her services from.
Before heading off to the convention center I ran into Michelle, a native of Malawi who is now a writer in Philadelphia for the Academy of Natural Sciences. According to Michelle Malawi has a 15% prevalence rate and it is growing ever faster. The privileged have access to treatment and meds through free clinics and DREAM HOSPITALS. The meds are low cost or free depending on income and they are supplied by PEPFAR funds. Hospitals are few and far between throughout the country, usually 2 to 3 hours by car, but because poverty is rampant, many must ride bicycles or even walk to obtain their treatment which could be a day long trip.
Even sadder to report were the numbers of deaths amongst Michelle’s immediate family and relatives (including 3 infants), many of whom passed away while she was attending college here in the states. Although she was spared having to attend several funerals, the fact remains there are still several positives left in her family. Her father was so devastated by the number of deaths that he finally took it upon himself to bring remaining family members to be tested and linked to services.
After listening to the Europeans describe their success stories with easy access to care and treatment through universal health care, listening to Michelle’s families devastating loss was more than I could bare. My walk over to the convention center couldn’t have been more solemn.
Because the Global Village was not scheduled to be open until 5 PM Sunday, I spent most of the early part of the day walking around Exhibit Hall where pharmaceutical reps were sharing space with AIDS Service Organizations from around the world, as well as several media representatives. It was at the Viacom “IN THIS TOGETHER” photo booth that I decided to participate in an Ad campaign, having my picture taken with a mini billboard slogan composed of my answer to their question “ why do we need to promote safe sex”? My answer was “Because we need to stop the spread of HIV/AIDS”. If my photo and answer was chosen they would flash it onto the Viacom electronic billboard in Times Square sometime soon. How cool would that be!
With plenty of time before the Opening Planery session and access to the Global Village I made another attempt at my pilgrimage to the quilt display This time it was there, but unfortunately after a desperate lengthy search, my tribute to Joanne was no where to be found. Although this was quite disappointing, weather conditions were preventing the NAMES PROJECT from being able to display many of the panels. Some things you just can’t control.
I headed back to the convention center for a much anticipated first visit to the Global Village. During my first walk through I made one last connection for the day regarding access to care with an HIV+ middle aged woman from Indiana named Angela. Angela participates in a positive woman’s blog site called “ girl like me.org”, which is attended by woman, 70 % of which are from foreign countries. She stated that the information exchanged on their site has been invaluable and based upon the number of woman who frequented their booth the camaraderie seemed infectious.
On a personal note, an additional surprise while visiting with Angela was running into a Face book friend (who also happens to be a member of this same organization), whom I had yet to meet face to face, named Maria, a very outspoken and self empowered HIV positive woman I had friend ed several months ago. Maria has left many a powerful message about her life with HIV as a Latino woman, and is not afraid to get the messages out there that need to be said. I didn’t realize until that week just how well known Maria was until I spent time around their booth, saw her photo up at an art exhibit in the Global Village, and saw her name as a panelist for one of the sessions. All I can say is, if you are a woman struggling with your life with HIV, Maria HIV Mejia is definitely a woman you want to meet on face book, as well as in person.
During my time with Angela I learned that when she was single she had qualified for Indiana’s ADAP and Early Intervention programs, which paid for all of her care and treatment. Then she met and eventually married an HIV negative man. Once married his salary and income were used in the qualifying process for ADAP, rendering her no longer eligible for her benefits.
She has her husbands private health insurance program, however the $150 per month deductible and extremely large co-pays have her reeling in debt and unable to pay her bills. As her eyes welled up with tears she admitted to me that she has been avoiding bill collectors for the past month.
My message for Thursdays planned legislative visits was becoming painfully clear. Repeal of the Affordable Care Act is not an option.
I completed my evening by submitting to an interview and photo shoot with “A GRAYING OF AIDS”, a project by The Graying of AIDS & ACRIA, which was on display near the food court in the Global Village, and would remain on their website (“agrayingpandemic.tumblr.comfor”) for quite sometime after the conference was concluded. By participating in a project like this I find that it enhances my feeling of self-empowerment, that I am in control of my life, not the virus, and that most importantly, I am doing my part to help reduce stigma. I would like to thank the folks at “A Graying of AIDS” for capturing such a poignant moment in my life from their interview process to place with my portrait.
I hope to post Part II of this blog shortly. Until then, I hope you enjoyed learning from these folks as much as I did.
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