When I wrote www.Commission-on-AIDS.org, I thought it may make a difference. I expected support from the same county officials who reviewed each and every page and responded with "awesome", "great work", "powerhouse" and on and on. When I post a flyer in a county building, it is removed within an hour by an employee. When I put letters and flyers out in the ASO's, they disapear as fast.
When I send "letters to the editor" to "LA VOZ" "California's Premier Bilingual newspaper," they expect to be paid because the Department of Education (a non-profit) pays them $7,000.00 per month. Several others simply don't run the articles because "HIV is not news." HIV IS news on October 15th, Latino HIV Education Day, December 1, World AIDS Day and of course on the "25th anniversary" of AIDS, we all got calls from TV and print media, I am not that impressed but, I did get front page and was on the AIDS 25 Years TV special. As an activist, I have to take every available opportunity to get out in the public eye, no matter how shallow the reasons of the media may be.
What really pisses me off is this. My web site has been online since December 1, 2005 and during all of these months, the county employees, who are paid to provide care to us have only logged in to the site 9 times (total). My Case Manager said he has not read the site yet. The Clinical Case Manager from the Center for HIV Prevention and Care said, "What web site? publicly.
Last January, I was part of the "Re-Entry Task Force", a sub-committee of the Sonoma County Commission on AIDS which was developed by a small handful of people actually living with the disease to help others. It has taken me 4 months to get the COA to make this organization a non-funded service category. Now, there is a possible $648,000.00 grant to develop and run this committee (through the NIH and Sonoma State University), not the county, they (ASO's) are all trying to become involved and make this program part of their services.
This brings another question... How many client/patients has Face to Face taken to self-sufficiency in their history of providing services to people living with HIV? That answer is NOT EVEN ONE. HIV provides jobs and rarely are those job positions filled by persons actually living with the disease. Face to Face just released their own site, 6 months behind schedule. They rented a resort, provided 150 gift bags for guests and a catered dinner for 150 people. Only 30 showed up, the site was paid for by a grant from the State Department of Health, Office of AIDS, they hired an out of county agency and spent every dime. They had 10 viewers on the same week mine has 1733 viewers. I had to sit through the presentation at the November and again in the June Commission on AIDS meetings. When another Commissioner complemented them on their hard work, I had to say, they hired an over priced agency and ignored local talent who have the skills and AIDS.
Being part of this years Funding Allocation Working Group (FAWG) is rather interesting. WE are not allowed to discuss reducing administrative costs. That is hallowed ground, we can only reduce or cut services to people living with HIV/AIDS.
I don't give up, I don't give in, no matter how hard it rains or how cold it is getting, I just keep on singin. Have the best day Michael
Moffie65:
--- Quote from: Cliff on July 06, 2006, 03:40:13 pm ---I actually think that term might be appropriate and actually prefer it to calling HIV a terminal disease. To me terminal disease is reserved for diseases where you are almost certain to die from the disease within a very short period of time, (e.g., an inoperable brain tumor that the doctors estimate will kill the patient in 6-9 months). Please remember Cliff, this disease is still " Terminal " when you subtract all the programs that are now under constant, daily attacks by the current administration.
Healthcare should be about empowering patients to be active in their treatment. HIV treatment encompasses so many facets including case management, care coordination across multiple doctors/specialists, ensuring continued access to quality (and more importantly competent) healthcare and most importantly active patient participation in healthcare (read doctor visits every 3 months). And these factors last for as long as the patient is alive. To me that is the very definition a chronic illness. Again, assuming everything remains constant as it was in 1992, when Ryan White was first nationally instituted. Unfortunately this is not true even now.
If changing to model of treatment from one of acute to one that encourages proper case management, coordination of services/care and access to quality healthcare then so be it. At the end of the day, it's not the term that I care about, it's the real live healthcare that I receive that is much more important.
--- End quote ---
Actually Cliff, I agree wholeheartedly with your view, and your opinion. Surprised? You shouldn't be if you have followed my views in the past. I really do think that in a perfect world, this view is not only valid, but should be aspired to. Unfortunately, things are already falling into the toilet, and people are already dying, due to the inadequecies of the current system, which is childs' play comparred to the profeciency needed to adopt the CCM model. Cliff, if all the things you state here, are things that you want and need to view HIV differently, I recommend that you never get to a place where you need "U.S. Public Assistance" and secondly, I would recommend that you stay overseas until all this nonsense shakes out.
The truth is, the system is crumbling, and without private insurance, PLWHA are already not being served to the full extent of the law at all. Many are dying because of what Jonathan and Michael have stated, and that is "the system is paramount, and the Administrative costs are now 'sacred' and not to be tampered with". I too am on the Allocations Committee, and when I threatened to advise and push for a cut in Administrative costs, I was almost arrested. Funny thing, if you rant long enough, I was able to get it reduced by $20,000.00. Not a fortune, but a start.
In Love and Thanks for intelligent people, like you guys! ;)
Andy Velez:
Dear All,
This is addressed to all but I would really have preferred to write it to each individually because I have a sense of knowing you and this is such an important subject and I think of this as a personal exchange between us.
First all, I have to try and stay calm and not go raving when I hear the words "chronic and manageable disease" joined to the term "HIV/AIDS." I'm trying to think if I ever hear anyone who's HIV+ make that particular connection. I don't think so, and with good reason. It is a deadly disease and anyone who thinks otherwise has different information than I do. I wish with all my heart I could believe otherwise. All we have are the tools to keep more people healthier for longer periods of time. But we know that water is always creeping up and eroding away the dam in one way or another.
That reality combined with the fact that really and truly the overwhelming majority of this country has never given a rat's ass about people with HIV/AIDS and/or is so ignorant and terrified of the subject that a true committment has never been made to halt infections in a realistic way nor to insure that everyone who needs medical and other care has it. Sure we have more benefits and help than in 1987. But look at how much political talk either is just blarney about money for HIV/AIDS and/or still is limplicitly HIV phobic. What has always been needed is a committment to a domestic equivalent of the Marshall Plan we created to help Europe out after World War II.
Make no mistake about it. The general public is afraid of this disease and of the people who are living with it. Those with HIV are somewhere on the stigma scale above child molesters but not above many others. Denial is a huge factor in dealing with this epidemic. HIV/AIDS in prisons is not a problem. People don't have sex there and they don't use drugs, right? And all we have to do is to tell hormone-crazed teenagers to ride bicycles and sing psalms and just say no and they will stop having sex, unprotected or otherwise, right? And therefore anyone who goes ahead and gets infected is like G W Bush, Sr. opined about those with HIV during his reign, words to this effect, "Well, of course when a friend has an accident because they didn't wear seat belt we still feel sorry for them." So in other words it's the fault of the person who got HIV.
Look at what gets the attention of Americans: "Reality tv." Paris Hilton. Laws against gay marriage. An amendment against flag burning. Michael Jackson's child abuse case or the latest variation on celebrity scandal. Steroids in baseball. Gas prices.
Depending on who is counting, more millions have already died in the epidemic than in all of World War II. And another 25 million are infected and No, NO, NO! this is not a chronically manageable disease. The only ones who will say that are fools, those who are profiting from the epidemic financially in one way or another and those who simply don't know enough to realize how stupid and inhumane that position is.
Generally I would say I am an optimistic person. And I do find that throughout history the general untidiness inherent in the human personality has enabled people to endure through many terrible times. That gives me hope sometimes. But it also sure is discouraging to live in this epidemic. What has encouraged me is the magnificence and the courage I have witnessed and continue to see evidence of, including in these pages. Often in the face of terrible, terrible challenges.
Jonathan, when you refer to the diminished level of activism I can only say that there were never a huge number of us. In the late 1980s and early 1990s, some of the ugliest responses to we activists came from within the gay community, people who screamed at us that we were a disgrace to our community (no kidding -- that happened in Gracie Mansion here in NYC when a group of us demanded of Saint Giuliani about when he was going to speak about HIV/AIDS in our ciity, the epicenter of the US epidemic). We were always a minority. For a while we were the flavor of the months or so in the media because we were bold and unapologetic with our methods. How to turn that around now? A lotta work. A LOTTA HARD WORK.
I'm glad B99 spoke up here and offered a more optimistic consideraton, even though I disagree with it completely and I see it as terribly naive. But I do get a sense of caring from his remarks and that's the beginning of something.
But nothing will get better with regard to HIV/AIDS unless people fight for it. That was true of the Civil Rights movement, the Women's Movement and it will always be true when those who are without are demanding a shift from those who have power. Power is virtually never transferred voluntarily, including in private life in couples.
OK, so I have ranted here a bit. But goddamnit, to the very bottom of my soul I know that we have to non-violently fight to correct the injustices we are faced with in this epidemic and elsewhere. And we cannot depend on others to do it. We each have a role to play in making things better. I pray for us all to find the strength and the willingness to do our part.
In solidarity with and deep affection for all here,
zephyr:
Hello, Gentlemen....
This is one of the most poignant threads I've read in my 10 month tenure here on AM.
I accept the challange to do my part in being a VOICE, for all who cannot deliver their own.
I AM STRONG, I AM WILLING, I AM HERE.
Thanks to each and everyone one of you.
In Love, Zephyr :-*
gerry:
A chronic care model for HIV is not necessarily a bad thing. It is not an attempt trivialize HIV/AIDS as an illness; it is an attempt to standardize HIV care in various settings. This is actually in place now in many urban centers with specialized HIV clinics and the hope is to expand this to other settings as well. This is from the website:
The six elements of the CCM represent broad concepts that may be summarized as follows:
1. Community—resources and policies refers to the need to mobilize community resources to meet patient needs. This principle also reflects the importance of encouraging patients to participate in effective community programs, the need for health care organizations to form partnerships with community-based organizations, and the role of advocacy in improving patient care.
2. Health system—organization of health care prioritizes creation of organizations and systems that promote safe, high-quality care. Providers should work toward comprehensive system change, provide incentives to improve quality of care, and develop systems for coordinating care across organizations. Support from all organizational levels is required.
3. Self-management support encompasses activities that empower and prepare patients to manage their health care. This component reflects the patient's central role in care and treatment and stresses use of self-management support strategies, including assessment, goal setting, action planning, problem solving, and follow-up.
4. Delivery system design should ensure delivery of effective and efficient clinical care and self-management support. The system should promote definition of roles among the clinical care team, a structure for communication and service delivery between the team members and clients, and regular follow-up.
5. Decision support increases the capacity of the clinical team and promotes care that is consistent with scientific evidence and patient preferences. Clinical practice should reflect treatment guidelines, which in turn should be shared and discussed with patients. Decision support should use proven methods of provider education and integrate specialist expertise and primary care.
6. Clinical information systems should use data to facilitate effective care. Data systems monitor the performance of the care system and provide reminders for both providers and patients. They also facilitate case planning and provide information necessary for coordinating care among patients and their providers.
The model also recognizes several characteristics of HIV that are unique to this illness and must be taken into consideration. Again from the website:
Several features make management of HIV/AIDS different from other chronic illnesses.
* Adherence to antiretroviral regimens is complex and often poor due to extraordinarily rigid adherence requirements, dietary guidelines, and side effects.
* Daily self-monitoring of HIV/AIDS is difficult due to the nature of the disease itself. Unlike diabetes, no self-administered HIV laboratory tests exist that can give patients immediate feedback on the effectiveness of self-care.
* HIV/AIDS stigma persists, and the discrimination and social ostracism that many infected people experience is particularly severe. In 1999, almost 50 percent of people polled felt that PLWHA were responsible for contracting the disease. Disclosure of HIV status has exposed people to violence, loss of jobs and housing, and even death.
* In addition, chronic illnesses bear some stigma. The degree of stigma largely pivots on factors such as whether the person is perceived as being responsible for acquiring the disease and whether the disease is communicable.
These factors must be considered when building models of care for PLWHA.
The challenge is how to make these standards uniformly achievable across the board to all persons living with HIV/AIDS in the US. And that's where the dilemma lies when there is an obvious funding shortfall to be able to deliver such standard of care, particularly for those who have no access to either government or company-sponsored health care. In short, setting up standards is not the issue; making it a reality for the majority of people affected is.