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A Crisis?  Or a Crossroads?

10/6/2014

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Michael Barret Jones,
Director of Development, Social Media and Advocacy
This morning I heard the news that the Robert Mapplethorpe residence on E. 17th Street would be closing by the end of the year.  To some of my friends and colleagues, this news, coming on the heels of the closing of Rivington House at the end of the summer, is troubling.    The Mapplethorpe Residence and Rivington House were opened to serve the long-term nursing care needs of people who were living with AIDS:  people who were hardest hit by an army of opportunistic infections that required intensive, lifelong solutions.  Today, the numbers of people living with HIV/AIDS in New York City and requiring that level of care has plummeted to the point that neither Rivington House nor the Mapplethorpe Residence were fully occupied.  Numerous theories and stories have circulated about the motives for closing these centers (Is the real estate they inhabit more valuable than the program?  Has mismanagement of funds created a situation where the cash is more important than the conscience?  Are people living with AIDS just not important enough anymore?), but I think there’s a different question to be asking.

Has the HIV/AIDS Industry become a victim of its own success?

That’s a dangerous question to ask, because it overlooks the human element.  There are still 50,000 new diagnoses of HIV every year, and despite tens of millions of dollars spent in prevention education and outreach, that number has remained fairly constant.   HIV, in spite of efforts to the contrary, is in no danger of going away, is in no danger of being cured, and is still creating challenges, daily challenges, in the lives of over one million Americans, and tens of millions of people worldwide.  

However, if you take a step back, and look at the epidemic from 30,000 feet, particularly in areas of the world like New York City where despite a slow start in the 80’s, have become places with amazing supports and services, you will see a different picture.  Last Friday, Iris House, an organization founded in 1992 to serve the needs of women living with HIV, released a report that its client base has a viral suppression rate of 250% of the national average, where 5 in 6 clients have improved health outcomes, where more than 50% of those with AIDS diagnoses have dramatic health gains, and where less than one in ten individuals diagnosed with HIV ever receive an AIDS diagnosis.  These statistics show tremendous progress in the war against HIV/AIDS.  We are looking at a population that is greatly benefiting from supportive services, from case management, and from education on topics ranging from treatment adherence to diabetes prevention.   When individuals are able to address their health care challenges and have the support and education to improve their own outcomes, they may never need a facility like Rivington House or the Mapplethorpe residence.

New York City and its plethora of AIDS Service Organizations are succeeding in their work.  No, there’s no cure yet, and until there is, we still have to provide critical support to people who may not have the resources to manage on their own, but here in this city, for the most part, there are options and successes.

Isn’t it the dream of everyone working on a particular disease or condition to find solutions that no longer require our services?  

If medical technology has advanced enough that fewer and fewer people need long-term intensive nursing care for AIDS related conditions, isn’t that a good thing?   And if they can be cared for in spaces that have a broader range of services, where broader needs can be met more efficiently (yes, I’m talking human efficiency as well as financial efficiency:  healthcare is a business), shouldn’t we welcome that?   Rivington House and the Mapplethorpe residence were both born of a time when no one wanted people living with AIDS mixed into the general population.   Rather than looking at their closures as failures, shouldn’t we see them as happy circumstances where isolation and stigma are no longer part of the experience of aging with AIDS?

It’s true that the residents of these facilities became each others’ families, and as someone who has performed at Rivington House with Lifebeat’s Hearts and Voices program, I know how close the residents and the staff are to each other.  It’s never happy when a family is broken apart, but in the greater face of the successes this represents, if that’s the greatest problem, it’s one we’re going to have to learn to live with.
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