
In the early days of HIV/AIDS-because resources were next to nothing and there was no way of navigating the system, those within the life, decided, if no one was going to help, we'd have to do it ourselves. You see, in the 80's this disease was the "flavor of the month". However, not anymore, Breast Cancer is. Ask yourselves, "When was the last time you saw someone wearing a red ribbon?"
You saw an army of well meaning groups trying to figure out what the immediate needs of the community were and doing something about it. In Indianapolis, it was "The Bag Ladies" and as these groups started to gain strength and the ear of the politicians, they formed networks such as ICCAN Indiana Community AIDS Action Network Inc. On a larger more national scale, Act-up!
After much protest, Ryan White passed in order to care for those without medical care or the means to get it. ADAP'S-AIDS Drug Assistance Programs sprang up all over the nation to pay for meds and treatment. Medicaid and Medicare was now being applied for by those who though they had no right to apply. Advocacy groups and case managers had to fight in order to get the laws changed for the application of SSI and SSDI. Too few remember that in order to receive money that you worked for, under old law, you pretty much had to have a CD4 of 50 or be dying to be approved of SSI, or SSDI. I must now remind those not around, of the tremendous discrimination faced by those seeking dental care or disposal of final remains, even decent housing.
Laws had to actually be changed because of those refusing service and bumping up their prices just because the person was diagnosed positive or with AIDS. Many of these groups were, and continue to be faith based. The Presbyterian Church has long led the fight to provide basic services for those diagnosed HIV+ or diagnosed with AIDS. The Catholic Order-Alexia Brothers sponsor "The Bonaventure House" in Chicago to provide not only housing, but comprehensive case management, a plan for TX of the disease and TX of the dually diagnosed with substance abuse issues, in larger areas, that is Big Cities, the resources see, to be endless because first, they receive more Federal dollars and to some extent, have had an infrastructure to provide a modicum of care.
As a Care Coordinator with the Aliveness Project of Northwest Indiana, Inc., and website www.alivenessproject.org 1-800-293-7312, our motto is: "Where hope begins! We as an Agency cover the entire Northwestern section of the state, because we are chopped up by county and considered rural. The Federal dollars that we seek are harder to obtain because the demographics may not be there, or worse yet, newly diagnosed cases may have been unreported if not at all. BUT ALL IS NOT LOST, Small town America! I love the challenge of working for the APNWI, because all of the services heretofore mentioned, we as an agency provide. I might add, I do so with a greater effort than our big city cousins.
Take comprehensive medical care, not only do we have some of the best infectious disease doctors in the country right here, but as advocates for our consumers and through memoranda of agreement, are able to provide Ryan White title 3 medical care, where no one is turned away. Because some of our consumers are not able to drive how do I get to that medical appointment? Through our listing of committed volunteer drivers; we oriented them to interact with the newly diagnosed, referring them to Treatment Advocates to navigate their way through the early phases, reporting directly back to the Care Coordination Team.
As a 501C3 organization, our agency provides HOPWA referrals covering all the counties in all our catchment's area. HOPWA stands for Housing Opportunities for People with AIDS. In addition, consider if you will, being able to provide housing for five years to consumers classified homeless. Our Genesis Housing program does exactly that. Providing immediate case management, counseling, referral for TX of their and ongoing plan of care to see that no consumer falls through the cracks.
Finally I would admonish all those not registered to vote to do so and most importantly to vote. There have been many who have fought, suffered and died trying to get those in power to recognize the needs of those struggling with this disease. Too many of us have become complacent. What I have tried to do is illustrate in this article is that the administration of the meds is not enough. The whole of the consumer must be dealt with. In the early days, all we really could do was to hold a persons hand and console them as they suffered. We have advanced too far to start walking backwards now, providing hope until there's a cure! Peace and 4 kisses