Scott Daly

After waking late Monday morning there was no time for interviews. However, after a very interesting morning plenary session of three excellent speakers I was joined for lunch by a young woman from Zimbabwe named Gamuchiarai. Gamu (her preferred nickname) is a student at the University of Cape Town and is attending the conference in order to aide her in writing her thesis on strategies to prevent the spread of HIV/AIDS among MSMs. The spread of the virus is escalating dramatically within this demographic in her country because there is no information/education available. She hopes to be one of the first people to provide that information to her government.

Zimbabwe is a country that is currently being sanctioned by the United States and therefore may be experiencing trouble receiving support from PEPFAR toward HIV/AIDS services. With 80% unemployment the country has many infected people who do not have access to medications, mainly because they cannot afford to go to private hospitals. Those with means (many work in the diamond mines) do have access to medications and the private hospitals. Those who don't must cross the border into South Africa illegally or go without medications and eventually die.

As we all know, we need to take these medications religiously for them to be their most effective. The painful truth for those who courageously cross borders to obtain their life saving treatment is that,even if they safely make it to the medical facility, they may not be able to receive a full months supply. The more trips they have to make, the greater the risk of being caught.

Tuesday I had what many would call a strange coincidence. In a venue with over 20,000 people covering 2 city blocks and 4 floors of exhibits, meeting rooms, food courts, and the Global Village, I ran into the same woman 3 times within a 2 hour period at 3 entirely different places. I took this to mean she was someone I truly needed to speak to. So I introduced myself to Johanna Soavedra, the LA representative to Coalision Translatin, a National Advocacy group for Transgender rights.

Unfortunately Johanna and I did not have much time to speak to one another but when I asked her how difficult it was for trans people to access their meds she said it was a major obstacle. They fear discrimination, stigma, and violence, not because of their HIV status, but because of their sexuality. And would you believe that later on that day, while outside making a cell call to my wife describing this unique occurrence, who walks outside into the same area but Johanna. Now I have never been close to anyone in the transgender community but after seeing her for the fourth time in one day, I plan to make a few more calls to Johanna, for I know there is an important message to be exchanged between the two of us.

While spending some time in the Positive Lounge I met Maria from Russia. What surprised me most about access to treatment in Russia was how similar Maria made their funding streams sound for AIDS services. If you lived in a part of their country where the HIV population was excessive all of your meds and services were free of charge. You could actually pick up a 4 months supply of your ARVs. In areas with less of an AIDS population, unfortunately, you could go four months without your lifesaving treatment. The extent of additional local government funding is the key to whether or not supportive services will be provided from region to region.

I must say, however, that the most enlightening conversation I had all week was with Olena Chuprina, the Project Manager and Psychologist councilor for Nikolayev Regional Public Youth Movement "Penitentiary Initiative" for HIV/AIDS in Ukrane prisons. Most of what I learned about her agency I received with the help of an interpreter. However Olena's english was not too bad.

There are 6 prisons in the Nikolayev Region. through prison prevention programs Olena eventually finds out which prisoners test positive for HIV. In the Ukrane prison system sexually transmitted HIV is #1 compared to years ago when it was IV drug use.

Her organization has an HIV specialist who performs a prick test to determine who is positive. The specialist will then prescribe ARV's which, through a partnership between the Global Fund & the Ukrane government, are supplied to the prisons. The prison doctor then distributes the ARV's to those prisoners who decide to come forward to get them. Obviously stigma is an obstacle to treatment in the prisons as well.

According to Olena the Ukrane is #1 in the prevalence of AIDS throughout Europe. Therefore the central government scaled up their funding, establishing HIV/AIDS Centers for all citizens, making many services easily accessible.

Olena's biggest challenge is to get those who are positive in to care and to stay in care. One incentive her agency provides to those who stay in treatment is a months supply of nutritional supplements. These are very much appreciated by prisoners, as there is not much substance to daily prison meals.

Olena's organization provides ARV treatment education to prisoners, as well as, when and how to take them. They even provide transitional services to make sure those prisoners who are released gain access to care and stay in care on the outside.

Of the 1000 prisoners in this penitentiary there are 200 infected inmates of which 100 still remain in care. And it is because of such a successful retention rate that Olena's organization was a recipient of the International AIDS Conference Red Ribbon Award in 2010. I thank her and her interpreter for taking the time to share her agencies success story with me.

This conference more than met my expectations and provided me with far more knowledge then just the usual scientific breakthroughs, treatment successes, etc. I now had ample ammunition regarding just what is and isn't working when it comes to accessing treatment from the stories I had hear from around the world. As I headed into a round of legislative visits I had scheduled for Thursday afternoon, I felt these stories could be used to sway a members vote, especially one who was anxious to repeal the Affordable Care Act.

I also want to say that after attending a session in the youth pavilion on "disclosure and dating" I was very impressed and assured that our younger generations living with HIV are doing their part to educate their peers and help us reach our ultimate goal of an AIDS free generation. It may not happen in my life time, but the future appears brighter for generations to come.

The XIX International AIDS Conference (AIDS 2012) took place July 22-27 in Washington, DC, which was the first time it was held in the United States in over 20 years. Below are my reflections on the experience.

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.

On the eve of my 60th birthday I found myself doing 3 things I have loved doing for most of my adult life: watch live horse racing on TV (in anticipation of the Belmont stakes), write something that's currently on my mind that I hope might be beneficial to others, and listening to good ole rock and roll from my high school & college days (i.e. Beatles, Stones, Santana, Steely Dan, Allman Brothers) you get the picture. After all, what else are you going to do on a rainy Saturday afternoon?

This piece all started after reviewing a few of my e-mails from different AIDS organizations reminding me that it is 30 years since the AIDS epidemic began and how i'd come to realize I had lived with it nearly half of my life here on earth.

What makes this so remarkable to me is that i'm still here, relatively healthy, working the same job i've been working since I got out of college. Thanks to the blood, sweat, and tears of many advocates of the 80's and 90's, some of whom i've met along the way and many more whom we have unfortunately lost, my current wife and I are still thriving on our ADAP provided drug regimens. We are maintaining a comfortable lifestyle, including an ability to enjoy our annual mecca to the ocean for much needed rejuvenation, and the endless joy we share while spending time with our 5 grandchildren, something neither of us thought we would ever experience.

On a wall in my living room is a framed poster of a NAMES PROJECT AIDS MEMORIAL QUILT display from Utica, NY in October, 1995 when a handful of survivors presented a panel dedicated to members of our HIV/AIDS support group, SOLIDARITY, including the name of my former fiance,Joanne. What an emotional roller coaster those days were, back when so many people we came to meet in that fireplace room of the local unitarian church were having their lives cut way too short. The obvious question then we never dared ask out loud was "when was it going to be our turn?"

I met my current wife, Cindy, in that room 19 years ago. There came a time when, what started out as a group of some 35 people, regretfully dissolved into a handful of survivors. Even our facilitator was among those we lost. But something also became very apparent to those of us who were still alive. We were surprisingly healthy, and therefore, thoughts of a life living with HIV began to dominate our discussions around the circle. Cindy and I got married in the fireplace room soon thereafter.

One Sunday we survivors got together to make that panel we presented to the NAMES PROJECT, to honor those who shared their stories, fears, and dreams of what was never to be. Cindy and I even made the trip to Washington DC to see our panel become a part of the main body of the QUILT at its' final formal display in 1996.

As I sat on the grassy mall next to our panel I couldn't help but feel a sense of validity knowing that Joanne was finally together with everyone else who had fallen to this dreadful disease. She too was a victim of the silence which fell over our nations capital during the 80's, inside that same building which was no more than 500 yards from where her memorial was now displayed. At least that president came to witness our fallen warriors.

I seldom think back to those days anymore, preferring to distance myself from the nightmarish events of a time many of us still living hope we never have to see again. I decided instead to follow in the footsteps of those who helped to create a better life for those of us who continue to live with HIV/AIDS, and to try to inspire others to do the same.

However, based upon the recent actions of certain members of Congress, those days could needlessly return if their agenda of reduced funding for HIV/AIDS treatment and services, as well as to effective prevention programs is passed through congress.

What a disastrous step backward that would be, especially at a time when the current administration has unveiled a long overdue National AIDS Strategy, and recent studies are recommending earlier treatment as an effective prevention method. Ever expanding ADAP waiting lists across the country are making this prospect increasingly unrealistic.

Back in 1989, on the same day Joanne passed away from AIDS, I learned my dad was diagnosed with ALS (Lou Gehrigs disease). He was to die a year later. Over the next 20 years many of us living with HIV/AIDS had benefited from billions of dollars pumped into state and federal research, treatment, and aids related service programs. Over that same period there was little to no money earmarked for ALS research. As a result, the medical community has yet to develop one effective method/medication for treating those living with Lou Gehrigs disease.

Don't think that hasn't left a lasting impression on my soul as I enter the 21st year of a fund-raising golf tournament I had organized in my dad's memory. Although we will eclipse this year over $1 million raised for the only ALS community based organization in northeastern NY, it pales in comparison to what monies congress has appropriated for AIDS over the same period of time.

The point being, if Congress were to open their purse strings to the scientific leading researchers of our nation, maybe other diseases might benefit from the urgency for a treatment that was once shown for AIDS, instead of looking to cut funding from proven programs and services which return healthier americans back into the work force, and less of a drain on our once vibrant economy.

Rescinding our recently passed national health care law is another example of government gone bad, especially when doing so becomes a vote to deny access to health care for all american's.

In honor of those who fought so hard for what now keeps us alive and healthy, we must take the time to remind our legislators to do what is right for ALL who are in need of treatment for what ails them. For in the long run it will save our country billions of dollars in unnecessary health care costs, and quite probably help to prevent the future spread of HIV.

In the meantime, I will continue to count my blessings and try to provide for those less fortunate than I. Somehow I believe Joanne and my dad would have expected that of me.

Some might say that is why i'm still here to enjoy watching todays Belmont Stakes, listening to music of a happier time when there was life without HIV/AIDS, and making the best of a rainy Saturday by sharing my thoughts with fellow survivors of HIV/AIDS.

For most AIDS advocates, 2010 represented both the best of times and the worst of times. 

Our celebration over such milestones as the long awaited passage of the HEALTH CARE REFORM ACT, the lifting of the HIV Travel Ban and the ban on federal funding for Needle Exchange, as well as the unveiling of Presidents Obama's National HIV/AIDS Strategy was over shadowed by the poor showing of the Democratic party in the November elections, ever increasing ADAP waiting lists across the land, and the dismantling of the Ryan White HIV Care Networks here in NY. 

For many upstate NY PLWA's, the Networks offered each of us the safety of social networking, once only obtained at our local support groups. More importantly, however, was the sense of self-empowerment we regained from having a voice in how and from whom we received our care and treatment. Reengaging in society through attending the multitude of network committee meetings increased self-esteem followed by a healthier mindset as we returned to the work force, thanks to our life saving meds. 

For this AIDS advocate, my successful personal crusade to overcome the fear of stigma can be greatly attributed to the 17 years I spent serving on many of the networks committees and participating in their various conferences, forums, advocacy events, and World AIDS Day activities. 

As a self disclosed AIDS advocate, my network activities also opened up opportunities for public speaking engagements, as well as published articles in newsletters, magazines, blog sites, and in World AIDS Day publications, both here and abroad. I for one am having a difficult time dealing with yet another loss to AIDS.  

Speaking of loss, threats by House Republicans for repeal of the Health Care Reform Act & imposing additional cuts to Ryan White HIV/AIDS programs and services were the key issues presented at the training portion of NAPWA's 2011 AIDSWATCH.  With adequate funding also a key component to implementation of an effective National HIV/AIDS Strategy, attendees were well versed on what were the key bullet points to each of the following AIDSWATCH asks:

 

1) Invest in full implementation of NHAS

2) Defend Health Care Reform and support its' implementation

3) Support increased funding of Ryan White HIV/AIDS programs- preservation of funding is critical 

 

Chris Collins from AMFAR provided the bullet points for implementation of NHAS, which charts a course of action to acheive greater progress in fighting HIV/AIDS by 2015 in 3 critical areas:

1) reduce annual infections

2) increase the number of HIV+ americans who know their status from 79% to 90% during that same period

3) acheive virol suppression among at least 20% of HIV diagnosed in underserved minority populations

 

Amy Killelia from TAEP provided the bullet points for defending Health Care Reform & supporting its' implementation

1) Increase access to affordable care and truly address our nations HIV/AIDS crisis 

2) Greatly reduce preventable, high cost medical interventions

3) Help to reduce new infections by providing access to HIV testing, care,and support services. We cannot let the promise that Health Care Reform brings to 1.2 million PLWA's in our nation, many of whom are among the 50 million currently uninsured

 

Matt Lesieur from NAPWA provided the key bullet points for supporting increased funding for Ryan White programs

1) Federal funding to combat the epidemic is not keeping pace with the care and treatment needs of the growing number of those infected

2) The NHAS calls for significant reduction in new infections and increased access to care and treatment

3) These goals cannot be met without adequate funding for:

   a) Ryan White care & treatment programs

   b) Increased federal funding for ADAP

   c) Support new investments in treatment education

   d) Expanded access to housing - HOPWA

   e) Keep current syringe exchange policy

 

After loading up with our legislative agenda, NAPWA hosted a Positive Leadership Award Reception later that evening. Among those receiving an award were the Legal Defense Network and Lt. Daniel Chou, both of whom were instrumental in the repeal of the controversial "don't ask, don't tell" military policy.  During the reception I had an opportunity to discuss the state of the HIV/AIDS community and our upcoming legislative visits with Frank Oldham, President and CEO of NAPWA, Regan Hofmann, Editor in Chief of POZ Magazine, and Jeffrey Crowley, Director of the Office of National AIDS Policy.

 

An additional adverse effect of dismantling the networks came in the form of decreased attendance. Several fellow upstate NY advocates who shared in the successes of last year were unable to attend this year due to lack of scholarship opportunities. Therefore most of our visits were limited to 2 to 4 attendees. My partner during most of these visits was Willie Hilson from Hudson Valley. This was his first time attending AIDSWATCH, therefore we may not have subjected the legislative staffers with the power of those personal stories that we know create the most impact. 

My hope is that those who were unable to attend this year will find the means to raise the necessary funds so they can attend next year. Our voices must be heard, otherwise HIV/AIDS funding will continue to diminish at a time when demand for increased care and supportive services is bound to be greater.

 

We had 5 scheduled meetings with our 2 Senators and 3 upstate Congressman, as well as plans to drop off packets to 3 additional upstate legislators. In New York State democratic party members are usually receptive to our asks, and for the most part each member held their party line. Congressman Gibson (R-NY) was new to Washington, therefore we felt this would be a critical meeting.

Willie and I attempted to concentrate on the positive approach that sounded something like this: 

"we understand you were charged with reducing the federal deficit. However depleting programs which have proven to save lives, as well as return people to the workforce, is not sound fiscal policy. We stand before you as examples of people who were on deaths door, but because of access to life saving meds through Ryan White funded ADAP, and housing through HOPWA, we are no longer a drain on the system, but contributing members of society and to the tax base. Do not take steps backward in the progress we have made. Instead ensure that we move forward in the prevention of this disease, as well as meeting the critical care, housing, and research needs of those living with HIV/AIDS."

We can only pray the majority of our legislative leaders come to their senses. 

As I was preparing to return to New York I ran into Michelle Lopez over breakfast. Michelle, as a board member of NAPWA, was very appreciative of those PLWA's who spent the time and money to attend AIDSWATCH. She was as concerned with this years low turnout as I was, wondering what it will take to get AIDS warriors back in the fight.

     It was 25 years ago this month that my world was turned upside down with the news that my former fiance, Joanne, had tested positive for AIDS. A month later I tested positive for HIV and was propelled into a lifetime of decisions resulting in acceptance of change, something I had long resisted.

I have participated in AIDSWatch every year since 1998. I thought, "How different could it be this year?" Against a backdrop of gloom, doom and budget cuts, I could not help feel a sense of enthusiasm and excitement as I accompanied two fellow advocates of the Northeastern New York Ryan White HIV Care Network, Shaquan Clark and Wayne Babcock, on their first AIDSWatch adventure.

In the past years, I have always been the sole participant from my region. Despite my best efforts, I always felt my attempts to convey the diverse personal journeys from my area fell short. This year with the presence of my colleagues at my side, I finally felt that the true face of our community was represented. It was a rich opportunity not only to share with legislators, but also to learn from one another as we shared in this empowering event, symbolic of the larger process in which each of us plays a vital role.

Even as a veteran activist in DC and New York, I can't describe the thrill of receiving my first invitation to a White House sponsored event, the President's Advisory Council on HIV/AIDS (PACHA) meeting.

As the 'newbies' we traversed trainings, public commentary, celebrity pictures, and legislative visits. Below is a conversation we had about the excitement, empowerment and renewed dedication we all gained through AIDSWatch 2010.

Scott: What were your fears and expectations prior to flying to Washington, DC for AIDSWatch?

Wayne: My only concern was the logistics of getting around DC with peripheral neuropathy, especially knowing that I should expect to do extensive walking around Capitol Hill. I expected to meet a well-organized and well-informed contingent of activists from every part of the nation. I had already met NAPWA's Vanessa Johnson and Juan Quinonez at Reunion Latina in Albany in March during the SABER training, 10-module comprehensive advocacy and empowerment sessions, so I was looking forward to seeing them again during the planning session. Sure enough, Vanessa warmly greeted us at the door and Juan registered us. Also, since I had previously participated in giving public testimony to ONAP on the formation of a National AIDS Policy I was looking forward to the PACHA meeting.

Shaquan: To me, AIDSWatch was advocating on a whole new and different level, so I was a bit nervous. I felt I really had a chance to make a difference in advocating on behalf of African-American positive women like myself. I was really excited once I received my security clearance to attend the PACHA meeting at the White House! When I registered, Natalie Pojman (our White House staff contact) sent me an email saying because of limited space she'd have to get back to me to see if I made the list of attendees. When the confirmation email came I was very happy, literally jumping for joy at the opportunity and honor of being selected!

Scott: What would you like to share with POZ readers about the PACHA meeting and the status of the National AIDS Strategy?

Wayne: First of all, I was pleased to see such diverse representation on the PACHA committee. But there is so much work left to be done to unify HIV services across the different states, and Jeff Crowley, the Director of ONAP, his staff and PACHA are somewhat limited in that they can only make recommendations to the President and legislators about policies to be implemented. Nonetheless, I am amazed at the amount of progress that has been made despite the organizational and political complexities the committee and ONAP must face.

Shaquan: I learned what the role of and expectations were of each individual PACHA committee member. I received a comprehensive overview of the goals and objectives of a National AIDS strategy. But, I feel that in order to move forward PACHA needs a lot more support from public and private sources in developing and implementing our national strategy.

Scott: As consumers who have participated in the National AIDS Strategy process, what has that personal inclusion in the process meant to you?

Wayne: I'm a long-term survivor, involved with the epidemic since a close friend died of GRID ("Gay Cancer") in 1981. It's gratifying to know that on a White House level we are finally developing a national policy that will translate into an equitable and positive future for all Americans and that hopefully will pave the way to a world without AIDS.

Shaquan: During the PACHA meeting public commentary period, I was allowed an opportunity to voice my concerns on what this strategy needs to address. I was able to share my own personal experience as a black woman living with AIDS, and remind PACHA members that some of us living with AIDS may not have enough time left to wait for a lengthy planning and implementation process. I believe I was infected because of a lack of education and public awareness in my community about HIV/AIDS. In looking to the future of my baby grandson and his friends, I strongly urged PACHA members to develop and initiate a strong nationwide prevention and education strategy that utilizes all forms of media so that the next generations will have less chance of becoming infected.

Scott: How do you think your participation in AIDS Awareness Day organized by NYAC (New York AIDS Coalition) and the training provided by NAPWA at AIDSWatch prepared you for your legislative visits in DC?

Wayne: The trainings emphasized concise wording and timing of your personal story to make the most effective use of your limited time with legislators. My previous legislative visits with NYAC helped me overcome any feelings of intimidation I had about participating for the first time on a national level.

Shaquan: I have participated for three years in local legislative advocacy efforts, so I felt well-prepared to meet representatives at a national level. The ongoing planning and preparation made me much more comfortable in speaking out about my disease and my experience living with AIDS. I was able to have my photo taken with actress and fellow activist Rosie Perez, someone I have admired for her long standing efforts to raise public awareness on HIV/AIDS. If I had not learned to speak freely about my personal story, I would have missed this opportunity of a lifetime! This feeling of self-empowerment has given me a sense of new-found hope.

Scott: Tell POZ readers what it felt like to tell your story to our policy-makers in Washington, DC.

Wayne: It was so empowering to have the ears of our representatives on a federal level! This is where national policy is being created. It was an occasion to be heard by those who can make a difference, not only in my region of Northeastern New York, but throughout the country as well. I was able to bring ongoing issues of stigma and disparities in care among minority populations to the attention of those in the forefront of the decision-making process.

Shaquan: I've finally had an opportunity on a national level not just to speak for myself, but also for others that are living with HIV/AIDS. I was eager, ready and determined to raise awareness for women who are homeless and living with AIDS in America. As a person living with AIDS, I was able to show legislators that as someone who has been homeless, I have had the opportunity to 'make it' thanks to programs for housing services they created and continue to fund. Scott: Was there a special moment during your visits when you felt like you were really being heard?

Wayne: The NAPWA briefing and the PACHA meeting in the Eisenhower Building afforded me an understanding of the scope of the issues. But it was not until we arrived at the gate to enter the White House that the realization of the moment hit me. The security was very exclusive and very structured, but we were allowed through. We were part of select and privileged group and that I would be given the opportunity to speak on behalf of our Northeastern New York Region. It that was empowering and exhilarating. I felt like I was being HEARD. When I spoke out on disparities in rural areas and underserved communities I saw the attentiveness, heard the reactions and felt understood.

Shaquan: In Congressman Scott Murphy's office with his legislative aide Morgan Jones, I was able to share for the very first time my personal experience being homeless. He acknowledged that Rep. Murphy was aware and deeply concerned about the subject of homelessness. I felt that his office recognized that there were multiple complex issues, including homelessness, that need to be addressed in the HIV/AIDS community.

Scott: What can you tell POZ readers about your experience at AIDS Watch that would convince them to participate next year?

Wayne: Being a part of a greater struggle to reduce stigma, disparities and new infections gave me a sense of self-empowerment I haven't experienced since my diagnosis 25 years ago. Being involved at any level is important and collectively we CAN make a difference.

Shaquan: Between the positive feedback I received after my personal testimony at the PACHA meeting and the legislative visits, I felt I made a huge impact. I was told by a number of White House staff that they now had a face to place with HIV/AIDS in the minority AIDS community.

Scott: During a private reception to welcome NYAC's new Executive Director, Brittany Allen, you had the occasion to share informally with Jeff Crowley, James Albino and some of the PACHA board members. What was it like having an opportunity to speak with someone who has the direct ear of the President?

Wayne: As a follow-up to the ONAP call, it was a great sense of relief to speak with Jeff Crowley and to know that he had a real understanding of the issues of rural America. He was sincerely concerned about rural PLWH/A access and linkages to regional AIDS services. It was exhilarating to be part of the process, to know that we were connected and making connections.

Shaquan: You never know how you come across. You always wonder was I too hard, not hard enough, did they get it? It was incredible to have time to talk informally with Jeff Crowley and James Albino, to be reassured that what was said needed to be heard. And that it was heard. It was encouraging to know that the Government is on the same page and that we all want to move forward collaboratively. As a single black woman living with AIDS it was heartening to see that they were sensitive, understanding and respectful of the difficulties I have faced and are committed to supporting and seeking ways to fund vital programs.

Since our initial diagnosis, each of us has traveled our own personal journey with HIV/AIDS. NAPWA trainers have always insisted that our own personal stories have the greatest impact on our policy-makers. We must share our journeys, explain how they relate to legislation and guide legislators in making program and funding decisions. The leaders we met were gracious, intent and focused. They heard us and understood us. They need us and we need them to be connected.

I believe these 'newbie' advocates have truly realized the positive effects self-empowerment can have in regaining control of one's own destiny!