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I give up! Jonathan and others, this is shocking!

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Moffie65:
I found something in my mail box yesterday, that shocked the hell out of me.  Now HRSA is actually instituting a program that formalizes the innocuous nature of HIV disease.  It is blandly called "Self Management and the Chronic Care Model, or CCM".  It now appears that our pleas to keep the real definition of HIV as a "Terminal Disease" is being scrapped formally and it is now taking it's position right next to Diabetes, and Arthritis.  They give no less than 21 "Professional" opinion paper references in this posted publication, and my first thought was, "I wonder just how many of these very learned opinions are from anyone actually "Living" with HIV?"  I also wonder just how many of these people went to Nebraska, and asked one specific case manager that has refused to cover the medications for one of our own very special AM members, and asked that Case Manager what was going to happen to her job when her client died from lack of medications.  I was also jerked back into their reality, wondering just how many of them ever spoke to some of those that are currently struggling for life with HIV, and just how many questioned those on their death beds. 

I tell you all that are newly infected; when the political climate changes, and there is no money left for care, therapy, Case Management, transportation to get to your doctor, paid doctor visits, and all the things that the Ryan White CARE Act pay for to keep you on this planet; what are you going to do?  Are you going to just give up the ghost and die, or are you finally going to get pissed off at an administration and Congress that allowed a Baptist Minister to be appointed Chief, the President's HIV/AIDS efforts.  I see threads here that are discussing gym regimens, and working out, as issues of merit.  I have news for you;  "Can you say trivial pursuit?"  I am not condemning working out nor am I advocating that we should not be caring for our bodies' health and fitness; only trying to point out that there might just be something more important to discuss now that our complacency is "ALLOWING" the government that has committed itself to care for our needs, is formalizing a "lack of care model", in an effort to cut costs and feed the "WAR MACHINE" of a mad Texan.

Here are the linkshttp://hab.hrsa.gov/publications/march2006/

http://hab.hrsa.gov/special/ccm/ccm.htm

And you wonder why I am always campaining for some of you to get off your dead ass and get busy advocating for your own health?

I abject Sorrow.

allopathicholistic:

--- Quote from: Moffie65 on July 06, 2006, 09:31:49 AM ---when the political climate changes, and there is no money left for care, therapy, Case Management, transportation to get to your doctor, paid doctor visits, and all the things that the Ryan White CARE Act pay for to keep you on this planet; what are you going to do?  Are you going to just give up the ghost and die, or are you finally going to get pissed off at an administration and Congress that allowed a Baptist Minister to be appointed Chief, the President's HIV/AIDS efforts. 

--- End quote ---

I certainly don't want to give up. I still have fight left in me ---mainly because I haven't been fighting for decades. I will continue to regard these forums as a primary source of information. Thanks Moffie

Moffie65:
Thanks for your voice, I know you will use it for the best energy output.

I am sorry that I closed this post so dogmaticly, but I cannot hide the true feelings I have. 

I consumed a wonderful breakfast with two eggs, one bananna nut muffin, two maple bacon, and one half tomato, topped off with a cup of fresh ground coffee, with half and half; and came to a delightful finish with a bowl of Goddesses good old green hemp medication.  Now I am ready for one more day of this interesting quest for longevity, and for peacful co-existence.

In constant awe.

B99:
I always feel like I have to watch myself when I respond to things here; because, being new to this disease and out of respect for those who have been living with this for decades and for those who have died, I don't have all of the life experience dealing with this condition and society in respects to it.  I can only go off of what my perception was just prior to my diagnosis and my perception just on the other side.
And I guess I have more of a question(and it honestly is an innocent one, not meant to challenge someones views, but to learn from it) what are the ramifications of classifying HIV infection as a chronic disease?  True people are still dying.  But people are still dying from diabetes and heart disease.  One of the perceptions of this condition before I was diagnosed was that HIV was equal to DEATH.  That (and the fact that I didn't have health insurance) was part of the reason why I did not get tested for 3 years though I suspected and I was suspicious of the person I contracted it from.
How you frame it, though, is important.  You just don't want people thinking that they can be irresponsible and just take a few pills and still live.  But you want people AND businesses to know that people living with HIV can do that: LIVE.  Maybe the life insurers will start allowing HIV positive people to get insurance in case something happens to them.  They've already started in Europe, we might move towards that in the US.  Maybe with this being classified this way-EVENTUALLY-drug prices might go down or level out over time to match prices for other drugs. AND, most of all, maybe those living with HIV won't be seen as lepers in society.  That might be far reaching hopes, due to the nature of how HIV is contracted.  But just as society is SLOWLY moving towards racial diversity and SLOWLY moving towards diversity on levels of sexual preference and disability, this might just be the Plessy v. Ferguson, Brown v. Board of Education, Roe v. Wade that the movement for those living with HIV need to become more intergrated in society. Granted, it probably won't fully happen until HIV becomes innocuous some how, whether through a vaccine or cure.
Obviously, it is a complicated issue.  And I am not advocating for people to be complacent with politicians on any level.  Left to their own accords politicians and health professionals will act in their own best interests. I have grown up black all of my life and know about the cold shoulder of politics and health care.  I am also 24; young, a position in life that no older group (politician or otherwise) thinks has anything to say.  But giving society a hope that there is life with HIV, that we are progressing through effective treatments towards a cure, can probably help the momentum.  We have proof that the money put in to this epidemic has not been in vain.  Those of us who would have been dead 10 years ago are still alive and are projected to live.  That can be used to get more funding, to spark a new interest and dedication to the movement.  In my view, this only kills the cause if we let it kill the cause.  
(BTW. I did ask a question at the beginning of this that I am interested in a response to, I just get long winded  ;D My opinion is not the only opinion and does represent, admittingly, a naive perspective.  But sometimes a simple, unencumbered perspective can be useful.)
Take Care Everyone.

Moffie65:
From the bottom up; your opinion, either stated or unstated, is of tremendous value to all of us, and thanks for the questions.

--- Quote ---what are the ramifications of classifying HIV infection as a chronic disease?
--- End quote ---

I have been digesting these two documents, and what I see is a sort of "pie in the sky" approach to a very complex issue. 
What this program, (which by the way, is already in motion, as is wouldn't have been published on the HRSA site, if it was not already in the implementation phase) assumes:

1. the people running the RW CARE Act in the respective states, are proficient and not already making life and death decision for clients.
2. it is currently working,
3. that HAART will work forever
4. that the drug companies will continue to find profit in further drug development
5. and that the government will continue to fund research
6. that the virus will never replicate beyond therapy
7. that our organs will sustain us for a lifetime with toxic substances coursing through our veins
8. that we are not all guinea pigs, and at 15 years, they suddenly all stop working
9. and finally that the individual taxpayers will continue to stand behind the politicians that have to vote to sustain us every five years.

I am sorry, B99, but those are just far too many maybes to turn this into an asthma type disease. If any one of the above 9 points fall out of focus, we are screwed, and I don't care how you define it, we are then living with a FATAL DISEASE.  Like I said above, there are those of us living right here on this site, that are just now, after 11 years of therapy; dealing with viruses that are mutating out of control, and show no mercy in the face of any drugs, even the new ones.  I just buried a friend who died of complications from the medications, and there will certainly be more who are going to expire, even in the full spectacle of our dear Pharmacy Industry, who have largely been responsible for this turn of events.

I cannot answer all your questions, as I don't have the answer.  I know I aspire to be independent, and working and alive and thriving; but I must tell you, we must still understand the unfortunate reality, that this bug is a mutant virus, we will never know the answers until there is a cure.

Thanks for asking.
 
In Love.

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