A Special Letter from the Chairman of the Better Way Foundation, Member of the NAPWA (National Association of People with AIDS and Member of the Southern States Manifesto.
A True Call to Arms
I just returned from the 12th Annual Positive Living Conference in Ft. Walton Beach, an event that is held annually for those living with HIV. This conference though was not just educational this time around; it was also a memorial for a great advocate in the fight against AIDS, Martin Delaney. A man who dedicated his life to helping those living with HIV/AIDS, by founding Project Inform, a leading national HIV patient advocacy organization that provided information to a terrified community about the growing epidemic and any possible ways of treating AIDS. When Delaney began his organization in 1985, AIDS was a death sentence. Delaney became a leader in the movement to accelerate FDA approval of promising new therapies. His work in this area has benefited not just people with HIV, but also patients with other serious diseases, such as cancer and hepatitis C. He was a leader in bringing the industry and community together to create solutions to improve patient access to HIV treatment. Marty was a visionary, an analytical, and unafraid to ask tough questions and push for solutions that improved access for patients. At the same time he was diplomatic, and empathetic to the needs of all parties at the table. He was extremely gifted in his ability to bring groups together with opposing views and arrive at solutions agreeable to all. In the process, he built trust, understanding, and pathways for future collaborations between the community, industry, and government groups.
The National Institute of Allergy and Infectious Diseases Director Anthony S. Fauci, M.D., said, "Millions of people are now receiving life saving antiretroviral medications from a treatment pipeline that Marty Delaney played a key role in opening and expanding. Without his tireless work and vision, many more people would have perished from HIV/AIDS."
President Bill Clinton sent a letter dated March 11, 2009, and in his letter he said, "Marty stands as a shining example of the successful results that are possible when we truly commit ourselves to attaining a worthy goal. Someday, AIDS will be banished from the headlines of our newspapers and relegated to the chapters of our history books, and it will be in no small measure because of Marty Delaney."
I never got the honor to meet and speak with the man who touched so many lives. Every story that was told was unique in its own way about how Marty had personally stepped in and touched their lives. But I could feel his presence in that room that he had came to year after year to speak out for those living with HIV. All his work and words now live on within us and embolden our cause to continue our fight to stop HIV infections and find a cure to AIDS.
One thing we have learned in advocating new policy in the fight against AIDS is that not everyone will be there at our side, not everyone will show their support, but we must never give up, and never shut up. Your going to make enemies along the way, but if anything can give us inspiration it is the story of Marty Delaney, who by the way was not HIV Positive, but a person who cared enough about all human life to show the world that we will not set back and let this epidemic continue to claim so many lives. We must carry on his torch. All 400 attendees have made that vow to carry on the torch of Martin Delaney and work together to find the cure for AIDS and fight for more federal funding for the South.
We have signed a petition to President Obama asking for more resources for the South. According to the Southern States Manifesto : Update 2008, The Southern Region has the most people living with HIV/AIDS (169,972), the highest in all four regions, yet the South ranks fourth, dead last when it comes to Federal Funding for HIV/AIDS.
We have petitioned President Obama to sign a Clean Needles Act and to re-instate the Ryan White fund that is due to sunset on September 30, 2009. These are two pieces of legislation that literally save lives. We are calling for a change in distribution methodology so that funding follows the epidemic; a $70 Million Increase for Title II Base; Increased set-aside ADAP supplemental from 3% to 5%; Counting of those living with HIV to be included in the numbers of AIDS cases; Capping of administration expenses; inclusion of hepatitis co-infection; increase in coordination and accountability; and create the first National Strategy to Combat AIDS, one that isn't only taught through abstinence education which is not working. Condoms, Condoms, Condoms. Say it with me Parents. Talk to your kids about AIDS. Parents must be educated and learn these techniques to teaching and approaching their children with these topic discussions. Open the doors of communication at home, at school, and at Church. The current social stigma of ignoring the issue, has only multiplied the new infection rates.
But we need one more vital piece and that is those living with HIV. This is your life, your infection. You must stand forth and put a face to the disease. AIDS can no longer continue to be a faceless disease. AIDS has affected every family in this country in some sort of way. It's time you bring forth the truth about your illness to your families, your friends, your work place, and let them know, that everyone, anyone, your brother, your sister, your mother, your father are living with HIV/AIDS. But in order for those living to come forth, our society must educate themselves with proper and factual information regarding the illness.
The hardest thing I ever had to tell my family was that I had AIDS. But today, I tell everyone I meet that shows a sign of love in their heart and compassion to helping others and even those who don't. Because I want them to know, AIDS is everywhere, in every family, every sector of this country, people you work along side with every day, or perhaps even a child you raised. Find out the facts and lend your helping hand. When you portray social ignorance about the disease and refuse to become informed and make your own children informed, then you could quite possibly be signing their death sentence. People need their families during this crisis, we need each other to work together to help bring an end to this epidemic once and for all.
One way of taking the first step and showing you actually care and want to make a real difference is by coming an attending this years 26th Annual HIV/AIDS Candlelight Memorial being sponsored and hosted by The Better Way Foundation. Please visit our website to find out more info about this event in which we will pay respect and provide a dignified memorial in the honor of over 28 Million brave souls who have lost their lives to AIDS and to commit to helping over 42 Million living with AIDS.
Two years ago, before I ever even knew the name Marty Delaney, I was starting my own advocacy towards better policy for those living with HIV/AIDS and to help improve the education regarding prevention. This has become my life's work. The Better Way Foundation is a Positive Led Organization that helps those living with HIV/AIDS by providing Support groups, relaxation therapy classes, activities, and exercise and medicine awareness. I made the choice to take charge of AIDS in my community because I have seen the failures that lie within, the lack of information, the lack of funding, and the lack of help.
I hope if you are reading this today, you will pass it along to someone you know living with AIDS or will visit our website and learn about how you can become educated regarding HIV Prevention and teaching it to your kids. I ask of all to help us in this fight. Together, hand in hand, we can and will see the end of AIDS.
Start living a better way today!
Jeremy S Hobbs
President and Founder The Better Way Foundation
Board Member of the Columbus Georgia Mayors Committee For Persons with Disabilities
Member of the Southern States Manifesto
Member of the NAPWA (National Association of People With AIDS)
26th Annual HIV/AIDS Candlelight Memorial Coordinator for Columbus Georgia