A friend of mine, Mike Mather (@rovlist) paraphrased a text by John McKnight (from “The Other Side” magazine) into “Five Rules to Protect Yourself from Being the Agent of the Devil in the Middle of Your Community.”
One of the phrases is: “ask whether we are changing the odds for everyone, or helping a few people beat the odds.”
I was diagnosed with HIV in 2012. I’ve written about my experiences in other posts here – I’m blessed in many ways: by the community of support in my family & friends; in the amazing care I receive from the Damien Center; in the care of my Higher Power throughout my early diagnosis and treatment; in being able to share with my mom days before she passed away that my viral load had quickly been lowered to undetectable…
Today, I want to shine a light on a few people who have changed the odds in Indiana for those of us needing care. This is the month I get my twice-annual check-up, as well as my new insurance cards from the State. So, it seems like a fitting time to celebrate these heroes…
When I was first diagnosed, my care co-ordinator shared that Indianapolis, Indiana are one of the best places to receive care because of our history with the disease in the “national spotlight” as well as behind the scenes… She specifically mentioned Ryan White
….an American teenager from Kokomo, Indiana, who became a national poster child for HIV/AIDS in the United States, after being expelled from middle school because of his infection. As a hemophiliac, he became infected with HIV from a contaminated blood treatment and, when diagnosed in December 1984, was given six months to live. Doctors said he posed no risk to other students, but AIDS was poorly understood at the time, and when White tried to return to school, many parents and teachers in Kokomo rallied against his attendance…A lengthy legal battle with the school system ensued, and media coverage of the case made White into a national celebrity and spokesman for AIDS research and public education.
[Along with others, Ryan helped to shift the] perception [of the disease by appearing] in the media to advocate for more AIDS research and public education to address the epidemic. The U.S. Congress passed a major piece of AIDS legislation, the Ryan White Care Act, shortly after White’s death. The Act has been reauthorized twice; Ryan White Programs are the largest provider of services for people living with HIV/AIDS in the United States.
Part of my health insurance coverage today is provided by the Ryan White Care Act; and the awareness (and acceptance) in the Hoosier State was dramatically changed by this brave young man. So thank you, Ryan for being a “John McKnight Hero,” changing the odds for everyone…
Another part of my health insurance coverage early on was known as ICHIA (Indiana Comprehensive Health Insurance Association). This vital program “offers insurance for people with health conditions who are unable to buy private health insurance coverage and for people who are HIPAA eligible. “ Being HIPAA eligible in Indiana in 2012, I was “guaranteed the right to buy an individual insurance policy plan from ICHIA and are exempted from pre-existing condition exclusion periods.”
Through this program, people with HIV/AIDS are able to cover the cost of medication ($2500/ month, for the rest of my life…), as well as other comprehensive medical care (medical, dental, vision). Why is this important: to keep us healthy (low to undetectable viral load and healthy immune systems), and reduce the spread of further infection through education and treatment.
Healthy: “your CD4 count is in the normal range (500-1500).” Undetectable: “your HIV viral load is undetectable (depends on the test used, but today this means generally <20 copies of the HIV virus / mL of blood).
What does “healthy and undetectable” mean? This means your immune system has not sustained any significant damage yet and your HIV treatment has been effective in reducing your viral load. (for current information, refer to TheBody.com. Read more here…)
I learned last year that a friend of mine (small world!), Bill Brown, was the Board Chair for ICHIA for many years. So, Bill and others who fought to ensure this and similar insurance coverage in Indiana are my other “John McKnight Heroes,” changing the odds for everyone…
President Barack Obama
Although programs like Ryan White Assistance, ICHIA, ADAP and many other acronyms I don’t claim to fully understand are / have been important parts of my health insurance coverage (I trust my care coordinator and ask her what I need to do, or refer to TheBody.com…), with the passage of the Affordable Care Act, the landscape has changed.
IN: ICHIA program to end
…With the upcoming availability of health insurance coverage through Exchanges, the ICHIA (Indiana Comprehensive Health Insurance Association) program will be terminated on December 31, 2013. The Legislature passed HB 1328, and it was signed into law by the Governor…
Although I get into heated debates with my dad about the effectiveness of President Obama, with this act and the ongoing intent of the State of Indiana (led by my two prior heroes!) – I am included in the National Health Plan. My premiums via “the marketplace” of $400-500/month continue to be paid by the State of Indiana. For this reason, in addition to Ryan and Bill, I consider President Obama to be a “John McKnight Hero,” changing the odds for everyone…”
Another hero (and friend, and member of my church!) is Alice Langford. A recent Indianapolis Star article does her story justice, so I’ll refer you to “A Place At the Table for those who have HIV/AIDS.”
Due to her own health, Alice’s home-cooked meal “legacy” came to an end. We celebrated her years of service to the community at Broadway with a special blessing and recognition (listen to her story here…). But for this reason (and her dancing at Greg’s / OP’s through the years,), Alice is another “John McKnight Hero,” changing the odds for everyone…”
In 2010, I had the fortune of working on a video documentary for the philanthropic work of the Joseph F. Miller Foundation. Joe Miller had a major impact on the HIV/AIDS community in Indiana.
Joe was generous to a fault when it came to his money. His JF Miller Foundation gave to many charities to champion causes dedicated to AIDS prevention and education, homeless and underprivileged children, and social injustice. He was a founding member of the Indiana Stonewall Democrats, a board chair for Indiana Cares, the nation’s second oldest HIV/AIDS education and prevention organization…and a board member of the Indiana ACLU.
Joe Miller has been making meaningful contributions to dozens of groups since the 1970’s, and his 2005 gift to the Damien Center to underwrite the Joseph F. Miller Center for HIV Testing and Prevention, has played a powerful role in the fight against HIV and AIDS in the central Indiana community…
Unfortunately, shortly after the documentary he commissioned was completed, Joe took his own life. I’ve written here before about the difference between suicide and depression – in the hopes of educating folks on mental health issues. Like so many who suffer from some form of mental illness and choose to take their own lives, Joe was a hero who deserves to be remembered for the ways in which he changed the landscape for the HIV/AIDS community. For that reason, he is one of my “John McKnight Heroes,” changing the odds for everyone…”
There are MANY others I could have mentioned…but I’ll stop here. Feel free to share your own thoughts, heroes, etc. And keep Mike and John’s thoughts in mind…
“ask whether we are changing the odds for everyone, or helping a few people beat the odds.”