AIDS at 42 yo, not able to get help
Sep 15, 2013
Hello,I am re-submitting my question as my life has just changed again. Hello , I am a 42 yo male with AIDS. Recently my physician left because of a new bill passed to help stop the abuse of pain medications so they have made it really difficult for doctors to write pain med prescriptions.
My issue is that I go to a Fully funded Ryan White Clinic and I was basically denied services. I was told by the physician that she is an HIV specialist and only deals with HIV it's self. I have a lot of chronic issues and I cannot afford to start seeing a ton of specialist, I dont have the money for it. I can go to a pain specialist but when I do , they acknowledge the pain they just say they cannot do anything and its HIV related and to talk to my HIV doctor. I go back and nothing gets done as they claim it's due to other issues.
I have a lot of health issues.. I had no choice but to seek out Hospice to take care of me, my pain etc. I dont want to die so early in my life but they gave me no option being that she is an HIV specialist and only deals with HIV and nothing else. Then why do they have all these services for persons with HIV.
I just dont get it and it hurts so bad to know that no one cares. I am hoping that who ever reads this, can help me or advise me of what I can do. Please I am begging for help.
I just found out my companion of 11 years has cheated on me many times, I fond out as I knew something was going on so I checked his phone out and there was my answer. Now I am told I cannot leave due to my health condition and if I do leave I will have to be put in a nursing home. If you looked at me one would think I am healthy. I am now just terrified. I have no help with any physicians and no help at home now, I have no one I can go to. I live in Louisville Ky, The Wings clinic is the only place I can go to that can help me on multi levels including housing but i am being denied as I stated any kind of help.I also want to note that being on pain medication i have a great history and have never abused my pain meds, it's very well documented but again, due to the HB1 Bill passing making it hard for them to write prescriotion although I already know that the physician that has turned me down is writing them for everyone else. I know this as some of them I have known for years.. its not a big city as one would think. we all know each other.
Thanks if anything for taking the time to read this.
Most sincere - Rain
Response from Dr. Young
Hello Rain and thanks for posting.
Sorry to hear of all your difficulties. Seems like the first thing to do is to connect with a good case manager, perhaps at your local AIDS Service Organization (ASO).
Given that the current clinic can't/won't provide comprehensive services, it may be that this process will take several steps, and perhaps several medical organizations.
Given that you have an established relationship with a HIV care provider, this is a good starting point, even if she won't provide all of the primary care needs. You mention that you have other chronic medical issues, and it's not uncommon for HIV specialists not to be specialists in these areas-- when this is the case, identifying a good primary care or internal medicine doctor (not a bunch of sometimes disconnected specialists) is usually a good starting point- then there isn't a tendency to pass the buck, but rather to try to deal with the problems holistically.
If you don't want to die, there's no reason to resort to hospice care. On the other hand, if you have chronic pain and other issues, it might not be a bad thing to try to identify a provider expert in palliative care- they're the ones who deal with chronic comorbid problems that limit quality of life, but not necessarily are terminal ones (like chronic pain).
A quick search on TheBody yielded this list of AIDS Service Organizations in Louisville. Maybe one or more of them can be enlisted to help your cause.
Good luck and feel free to write back, BY
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