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.
May I recommend to each and every one of you who may be silently wondering what the future of HIV/AIDS services will be like with full implementation of Health Care Reform and the National AIDS Strategy. Take the time to visit “taepusa.org” and review the slide presentation regarding “Ryan White and Health Care Reform:Future Paths for Integration, Expansion, and Innovation”. This is a topic for future discussion, however significant change is coming and I encourage you to take the time to see the future.
Who knows, it may stir up that AIDS warrior in you.
As I conclude my AIDSWATCH report I wish to thank the members of the consumer involvement committee of the NENY Ryan White HIV Network. They have been instrumental in my preparation and attendance of this crucial advocacy event. And to the entire Network membership, thank you for all you have done to reshape my life and make this incredible 17 year journey possible.
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