Showing posts with label activist. Show all posts
Showing posts with label activist. Show all posts

Saturday, November 10, 2012

Jeff Allen - Positive CHampions

On Sunday November 11th at 9pm EST we will be speaking with Activist Jeff Allen on the POZ I AM Radio Show. Jeff Allen tested positive in 1985. He was a drug addict using heroin and cocaine and reckless in his behavior. Jeff was homeless and living in my car for more than two months. Jeff lived in Key west with his partner of 12 years where the HIV community was small and compact. When it came to the end of his life he wanted to leave and go where he was not so well known. After his passing Jeff moved to Deland Florida right outside the Daytona Beach area. He was very frail and weak, but needed a purpose in his life. This is when Jeff first started volunteering with HIV/AIDS in 1995.

Living with no T-cells for 3 years and a viral load 1,650,000 Jeff contracted MAC (Mycobacterium avium complex) from potting plants in my yard. “MAC,” is the name of a group of germs. These germs can infect people who are living with HIV. Jeff had to go on an IV drip for 5 days.

Then Jeff got involved with his local Ryan White consortium (Partnership for Comprehensive HIV/AIDS Planning PCHAP) he ended up chairing the consortium for 7 years. He then decided he wanted to make a difference on the national level. Jeff knew he wanted to get involved with the homeless in some capacity since he was previous homeless. Jeff also knew that he wanted to help improve the quality of care that HIV/AIDS patients receive. So he applied and was accepted in several different positions

Then in 2011 working with his consortium, they needed to address the out of care numbers of clients that they have in the local area. After conducting focus groups and soliciting surveys, it was decided that the real issue was the fear and stigma that is associated with HIV/AIDS. People did not want to get tested in areas know to treat or counsel HIV positive people for fear of being associate with having the disease or being gay. So Jeff created the Positive Champions Speakers Bureau to deal with fear and stigma. www.positivechampions.org


Thursday, October 6, 2011

Catching up with Janine Brignola

This Sunday October 9th at 9pm EST Robert Breining and Jack Mackenroth will be catching up with Janine Brignola.
Janine is a twenty nine year old  HIV+ woman, mother, college student, activist and advocate. Janine has spent the last five years years since she was diagnosed learning what she could about HIV itself, the stigma attached to the disease, and how HIV affects the lives of those living with the disease in America as well as abroad.

After attending her first conference she decided to dedicate as much of her time and energy as possible to being a part of the solution. She has done advocacy campaigning both on the local, state level as well as the national level. Janine is an activist who speaks to educate, as well as by blogging both with written word and with video blogging, utilizing youtube with blogs on several sites including POZIAM and  MTV Staying Alive. She has participated in an anti-stigma campaign, was featured in commercials and on billboards.

She currently is employed at Hope's Voice as a speaker for the Does HIV Look Like Me lecture series and she sits on the board for The ADAP Advocacy Association. Janine enjoys to spend as much time possible just being mommy to her four year old son and she believes that it is her privilege and honor to be his mother and to be the activist she has became.

Sunday, July 10, 2011

Where you at ? - The ADAP Crisis in America

Some of you may be familiar with and may of read my previous posts -here- here and here about the ever growing AIDS Drug Assistance Program (ADAP) waiting list in the United States. Well it is that time of year again when the ADAP Advocacy Association ( aaa+) holds it annual ADAP Conference.  aaa+ strives to promote and enhance the AIDS Drug Assistance Programs (ADAPs) and improve access to care for persons living with HIV/AIDS.  aaa+ works with advocates, community, health care, government, patients, pharmaceutical companies and other stakeholders to assure that access to services recognize and afford persons living with HIV/AIDS to enjoy a healthy life. As always I have to applaud and say THANK YOU to  Brandon Macsata for organizing this whole thing and Amanda,Christopher,Joey and Regine and all the volunteers for making the conference a success.

Currently there are  8,615 Americans (as of 6/30/11) who are not getting their life saving medication. They are just simply sitting on a waiting list. Since 6/29/10 over 6,000 Americans have been added to the ADAP waiting list. That is in just one year. This is what made this years conference extremely important. Can you imagine finding out you are HIV+ today and not being able to get medications because you can't afford them. AIDS medications can cost $1200 a month or more. Would you take the time to apply for ADAP if it meant you were going on a waiting list ? For many Americans this is a reality. So on top of the 8,615 currently on the list can you imagine the hundreds or thousands of people living with HIV/AIDS who don't apply since they can't get care and treatment they need.

It is very frustrating to me. I feel that every human being should be given the treatment they need to live a happy life, regardless of what disease they have or how big their bank accounts are. How can someone not be able to look inside themselves and find  the compassion to want to help another human being. It leaves me dumbfounded. We can sit here and point fingers but as a nation we need to stand up to all responsible and create a movement.We literally need to take the streets and fight for our lives.

Lets get back to the conference. The conference opened up with guest speaker Bishop Joyce Turner Keller. The Bishop has lofted the term “southern hospitality” to an entirely new level. She is not only the founder and CEO of Aspirations, a non-profit faith-based community service organization, but someone who is living with HIV/AIDS herself, and has dedicated herself to educating, supporting and inspiring others living with HIV/AIDS throughout the nation.

 She was AMAZING. She not only walked in like a rock star with bright red hair, she brought the house down with her opening speech. We all felt her passion and it re-energized the passion inside all of us. She kept asking us one question thought out her speech. "Where you at ?"  It clicked in so many ways. At one point during here speech she was calling out names of states. "Florida..Where you at ? Georgia..Where you at ?" Then attendees from each state would make noise and raise their hands. It was very empowering. By the end of the conference she had us all screaming "Where you at ?" It made it me realize how important it is for us living with HIV/AIDS to STAND UP and get our family and friends involved. I hope to have her come on POZIAM Radio sometime soon.

 

Tuesday evening I had an awesome experience. I have always wanted to get a group of POZIAMers together for a dinner or event. FYI - POZIAMers are members of my social network. I knew a bunch of them would be in DC for the conference and I would be meeting them for the first time. So I organized a dinner at Level One and about 20 people responded yes. Most of all met out front of the Westin Hotel.

 
With the help of our tour guide Christopher Myron, our clan arrived at Level One in one piece. There we met up with other POZIAMers who lived in DC but were not attending the ADAP Conference. It was such an amazing feeling to meet the people you see online in person. People who you talk to everyday or read their blogs. We had a great time and obviously took plenty of pictures. I can't wait for the next POZIAMers dinner. Some of us were outside the hotel sharing stories until 3am. We didn't care what time it was. These little conversations with fellow advocates can be life changing. Having Dab Garner as my roommate was one of the other highlights of my trip. Spending time and having conversations with a man you who has been fighting this for over 30 years was priceless. I admire and respect  his wisdom and strength. This was the icing on the cake for me.

 

 


Wednesday evening we all attended  the 2011 Annual ADAP Leadership Award Dinner. As a Board member of aaa+ I have to say we recognized an amazing slate of leaders, who for the last year have taken it upon themselves to raise awareness about the AIDS Drug Assistance Programs. All doing their part in the fight in their own way. It was an honor to be among them all. Over all the conference was a great experience and brought people from across the United States together to discuss a every important issue.

 

The 2010-2011 award recipients include:

ADAP Champion of the Year:
 Dab Garner of Dab the AIDS Bear Project

ADAP Emerging Leader of the Year:
 Jason King of AIDS Healthcare Foundation

ADAP Corporate Partner of the Year: 
The Honorable Neil Romano of The Romano Group, LLC

ADAP Community Organization of the Year: 
Stephen Gunsallus of Counseling Ministries.Org

 ADAP Lawmaker of the Year:
 The Honorable Alcee Hastings, M.C. (FL-23)

ADAP Social Media Campaign of the Year: 
AIDS Activism 101 by Mark King of MyFabulousDisease

ADAP Grassroots Campaign of the Year: 
• ADAP Media Story of the Year: 
HIV S.O.S. by Charles Blow of the New York Times

 Congratulations to all the recipients and Thank you for the hard work you do and awareness you have continue to bring to the ADAP Crisis in America.

Current ADAP numbers
8,615 individuals in 13 states, as of June 30, 2011
Alabama: 73 people
Arkansas: 40 people
Florida: 3,562 people
Georgia: 1,630 people
Idaho: 20 people
Louisiana: 824 people
Montana: 29 people
North Carolina: 292 people
Ohio: 485 people
South Carolina: 810 people
Utah: 25 people
Virginia: 817 people
Wyoming: 8 people


For more information on ADAP waiting lists.
Please visit  www.adapadvocacyassociation.org/ 

Wednesday, March 23, 2011

My Positive Living Conference Experience


From March 10th -13th I had the pleasure of presenting a workshop at the Positive Living 14 Conference in Fort Walton Beach, Florida. I was very excited when my abstract was accepted by OASIS (Okaloosa AIDS Support & Informational Services) I was told all about this amazing conference before hand but what people told me about it, didn't hold a candle to what I experienced. There were 433 attendees and 206 of them were first time attendees. I was one of the first timers. I was never at a conference where most of those who attended were HIV positive. I was told out of the 433 attendees 95% or more of them were HIV positive. Just knowing that allowed you to let your guard down and just be yourself. When I arrived at my hotel and walked out my back door, I was blown away by the beautiful beach. It looked like a postcard. I knew from that moment that this conference was gonna be a great experience.

 

On Friday morning at 8am I attended the Activate U workshop led by Butch Mckay ,Jesse Fry and Rick Vitale. There was a feeling of magic in the air when I walked into the first workshop. The workshop began at 10am and started off my showing a film called Bloodlines. I have to say that seeing this  film was one of my favorite parts of the entire conference. The Activate U Advocacy Academy is a program funded by the National AIDS Fund to promote grassroots advocacy training in north Florida. Activate U under OASIS provides workshops throughout northern Florida that teaches the basics on how to effectively advocate on HIV/AIDS issues and how to locate, properly write, or contact elected officials for your district.With the ADAP crisis a huge issue in Florida this was a great workshop to start off with. Of course I was happy to see Dab Garner founder of Dab the AIDS Bear Project there spreading his 30 year message of Hope.


Since I passionate about the AIDS Drugs Assistance Programs waiting lists at 3:45pm I attended the ADAP Crisis workshop that was presented by my friend and fellow ADAP Advocacy Association  board member, Brandon Macsata. This workshop was amazing despite Brandon missing his flight and presenting it via telephone. I am not surprised at all. Brandon is such a great speaker. With the ADAP waiting lists reaching over 7,000 people this workshop brought out so much passion in those that attended. I think the one thing that shocked me was that the ADAP waiting list has grown over 900% in the last year. That is not a typo over 900%. At one point a woman stood up and shared her personal story of losing her husband to this disease and not having medications to save him. I think when she finished there wasn't a dry eye in the house. Everyone offered hugs to her when the workshop finished.

 
Next was a break followed by dinner and then some welcoming remarks from Butch Mckay the Executive Director of OASIS and then an update on HIV in the Southeast by Tom Liberti. We were then treated to some musical entertainment by the fabulous Redd.

Saturday Morning came early ... I woke up at 7am to get some breakfast before attending Mark King's workshop - My Fabulous Disease. I wasn't missing this workshop for anything. I knew it would be humorous, touching and educational throughout the 90 mins. Mark has an amazing way of connecting with people when he speaks. The man is a true advocate and is someone who I strive to be more like as I continue to get my feet wet in this whole speaking arena. There were times when people were falling out of their seat laughing and times when it was so emotional the room became silent. We could of heard a pin drop at points. Everyone was so captivated they were sitting on the edge of their seats and hanging on his every word. For some it was the first time they laughed in a long time. Humor helps people deal with difficult issues. Mark not only shared his story but also shared the history of HIV/AIDS with us all. If you have never visited My Fabulous Disease then I highly recommend that you do.

After that  there were two workshops I wanted to attend that started at 10:15am. I first sat in on Sean Strub's workshop on HIV Criminalization. Sean is the founder of  POZ magazine and is currently involved with the Positive Justice Project. This is a very important topic that all people living with HIV/AIDS should be concerned about. The laws are different from state to state and it makes it confusing for many HIV positive people. The worst part about it is that some HIV positive individuals are being sentenced to 20+ years in jail without even passing the virus to another person. They are being prosecuted for not disclosing their status or for spitting on someone. Even though HIV can not be transmitted through saliva. In 2011 people should be educated enough to know how the virus is transmitted and how to protect themselves.

I then realized that my friend Cathy Robinson Pickett was also doing a workshop at the same time so I ran up 6 flights of stairs to catch the end of her presentation. Her workshop was on HIV and Domestic Violence. Cathy hosts a podcast called Straight Talk with Cathy. You all should check out her website and podcast.

At 1pm I had the privilege of presenting my own workshop "Finding HIV Social Support via POZIAM and other social networks". This was my first workshop ever. I was excited to be in front of an audience full of HIV positive people.  I shared my story which led to why I created POZIAM. I covered the use Facebook and Twitter to find HIV info and to reach those living with HIV. There were about 50 people present in the room during my presentation some of them were already POZIAMers and some of them never heard of POZIAM before the workshop. I was nervous and excited all at the same time. I loved being able to interact with others who understands what it is like to be positive. Knowing your not alone is big thing when your diagnosed. It was nice to meet POZIAMers face to face. Having online friendships with some of these individuals made me feel like I already knew them before meeting them. I had the honor of meeting fellow POZIAMer  Overall I think it went well. As I was cleaning up from my workshop, I also crossed paths with Jim Geary the Author of Delicate Courage - A Memoir of Jim Geary. Things happen for a reason so I felt I needed to purchase his book. You all know I am a slow reader. I look forward to reading it.

  

 

After my workshop I then went to Larry Frampton's workshop on HIV and Aging. It was packed with people and great information. Half way through I went back up stairs and attended Scott Boots workshop on Healthy Relationships which was also very informative and eye opening.

 

We were all invited by Michael Rajner to attend a memorial service on the beach at 6pm for fellow activist, Randy Allgaier. I only met Randy once before at the ADAP summit in Washington D.C. and felt compelled to attend. I am glad that I did. Randy touched many with his friendship and it was shown through the words of those who knew him. Some prayers were said and then we were led into a short meditation by Dr David Fawcett. We then all took sparklers and spread rose petals into the waves. The memorial service was beautiful and was a moment I will never forget. Standing in a circle holding hands on the beach with people who understood you, it was powerful. It moved me in a way that I can't even put it into words. I know Randy is looking down and watching over his friends who continue the fight.

  

 


Then there was a short break and then we all returned for dinner around 7pm. During the dinner they presented  2 awards. First they surprised Butch Mckay with the Host with a Heart Award and then presented  Jesse Fry, with the Power of One Annual Award. Congratulations to Butch & Jesse ! They are both amazing guys. The dinner closed with an awesome speech from Paul Kawata, the Executive Director at National Minority AIDS Council. He was hilarious and inspiring. Paul was amazing and had the whole room captivated by his message.I could of listened to him all night. The National Minority AIDS Council is having their 15th Annual United States Conference on AIDS, November 10-13th in Chicago. So start saving your money now to attend. I am hoping to attend this year.

 

After dinner we moved downstairs to the Ambassador room to enjoy the rest of the evening dancing and singing karaoke. There were a lot more dancing then singing. It was great to be able to let you hair down and socialize with everyone. I will tell you this I met many new friends on this trip and that alone is worth attending this conference. Overall it was a great experience and I highly recommend that you try to make next years Positive Living Conference 15. It is something I will never forget. I love that there was such a diversity of  people and workshops. There were so many great people that I wish I had more time to meet. Well there is always next year. I wanted to send a special thank you to Butch Mckay and Rachel Bauer for organizing the entire conference and allowing me to come and present a workshop. You both did an excellent job and helped many including myself while doing it.

 

Photo Credit - Jt Talley


There is a FB group that was created to offer feedback about the Positive Living Conference. Here are some feedback from other attendees of the conference. Of course I have their permission to share them.
Visit OASIS (Okaloosa AIDS Support & Informational Services) for their upcoming events and conferences.