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I have AIDS. In the spring of 2009, I nearly died from a bout with PML, and I was hospitalized for a month (my private insurance company wouldn't continue to pay after that-- I was "transitioned" to a rehab facility where I spent the next three weeks-- interestingly, the FIRST two rehab facilities on my list rejected me because of stigma, apparently)... the first several days that I was in the hospital, I was located in a quarantined, 'infectious disease' room, and my visitors were required to wear masks and use an airlock to visit me-- not because of MY fragile immune system, but ostensibly to prevent my spreading my icky cooties through airborne contact. This was not in 1985-- this was in 2009. Stigma, baseless myths, hatred and irrational fear still exists. I moved to SC when I was no longer in imminent danger of fatality. At the ASO here, my case manager made a VERY BIG DEAL out of confidentiality and privacy. I found it rather odd-- turns out, in SC, the bigotry and phobia related to HIV is even MORE prevalent. After nearly two years of being here, I am still very careful to avoid unnecessary 'disclosure' to folks, for fear of discrimination and undue hatred. This must be what it's like to be 'closeted.'
Rodney Goodie
Paul, I totally agree with your assessment of the changing landscape of care for HIV/AIDS treatment. While FQHCs have an important role in our community, it would be a horrible decision to eliminate ASO who specialize in HIV treatment and care. It would be great if HRSA would grandfather all ASO healthcare centers funded by RW into a specialized FQHC status. This would eliminate the need to merge these critical services into FQHC centers who do not possess the expertise to deliver quality and culturally compassionate care. ASOs have been in the trenches of fighting the HIV disease and are a unique, specialized care center for PLWHA. As the CEO of a nonprofit healthcare ASO with 1,600+ PLWHAs in care, we have applied for FQHC status but this application system is so politicized and competitive already that ASOs have a significant disadvantage towards achieving an FQHC status. One size does not fit all. We have to fight to sustain the specialized care ASOs provide to our HIV+ brothers and sisters. Ryan White has been revolutionary and to think the existing FQHCs can increase their capacity to add specialized HIV care is premature. I fear our patients will receive watered-down care unlike what they experience now. Even with the chronic care classification, people must not minimize the specialty care this disease require. How many of these FQHCs have providers that are AAHIVMS specialist? Very few. We have to act up and stand up for the quality of care we have created through RW.
August 4, 2011