Meds, Mind, Body & Benefits > Insurance, Benefits Programs & HIV

ADAP Funding Threatened by Teabaggers & Conservative Democrats

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Hellraiser:
Sometimes I can't believe our political system.

"He noted that Sens. Richard Burr (R-N.C.) and Tom Coburn (R-Okla.) introduced a bill last month that would take the $126 million needed for ADAP this year from the federal stimulus program, where there are millions of dollars in unobligated funds.

Sens. Michael Enzi (R-Wyo.) and George LeMieux (R-Fla.) also signed onto the bill, but no Democrats so far have agreed to become co-sponsors. Weinstein said Democratic sources in the Senate told him the bill would be “dead on arrival” when sent to a committee to consider it."

No Democrats makes me wonder if there are other stipulations to the bill that aren't mentioned.  I'm also quite suspicious that this is being proposed by Republicans.  I'll take an ally where I can find one however.

edfu:

--- Quote from: jkinatl2 on June 09, 2010, 11:40:53 PM ---Well, I hardly think that using your life as a bargaining chip is the wisest possible idea. If you are under the poverty level in the US, you qualify for assistance - from food stamps to free-or seriously reduced- medical treatment. Most states with an AIDS Service organization will have a social worker on staff who can assist you in getting your meds. There also is a fairly large underground network of drug donations. I myself participated often in ine here on AIDSMEDS, run by the late and lamented Lisa Nowack.

Can you imagine that she was actually given flack, and run underground herself by members of this very forum for redistributing drugs?

There are almost ALWAYS possibilities. You have to keep your wits about you, and cultivate a strong network of support. One of the perks of disclosure is that when the chips are down, those who know what you are going through are likely to be in the position to be of some help.

As far as not testing, well, the alternative is going to the hospital when one comes down with PCP or another preventable OI. And then bankrupting themselves, losing all possessions and having to negotiate the quagmire of social security and disability when one is in no position to think clearly, or to wait.

After that, assuming you don't die, yeah, then stuff gets a lot more free.

For the rest of your artificially lengthened life, as the slightest blip in income can strip all those lifesaving meds and doctors visits and food and shelter out from under a person.

The system IS broken, I admit. However, throwing ourselves into the gears to stop that system is NOT sabotage. It is suicide.

--- End quote ---

Jonathan, for the first time in your long history of sometimes brilliant posts I am completely bewildered by this response.  I have long been a fan, so it pains me to state that I really don't understand what you're saying.  Your mixed metaphor has me completely confused:  "using your life as a bargaining chip" and "throwing ourselves into the gears."  ???  One does not throw chips into gears.  I hope you would clarify. 

To "keep your wits about you" implies that one's wits are at the same high level as yours and others on this board.  To "cultivate a strong network of support" implies that such a network exists and that one knows how to cultivate it.  No offense intended, but do you really believe such a strong network exists in, for example, Utah, with a waiting list?  Do you think that an IV-drug user, for example, knows how to cultivate any existing network or knows that he can come to AIDSmeds.com for advice, even supposing  he or anyone else recently diagnosed has access to a computer?   

I have nothing against an "underground railroad" of ARV-drug supply, when our health-care system is so disfunctional, but is that the best advice that can be given to a new PWA?  Do you really believe that there are social workers in every state who can assist a newbie to acquire HAART?  There have been too many posts here recently from those who have difficulty in accessing ADAP for me to believe that.

So...do you really believe that those who cannot access ARV's are no more than chips in the gears?  Do you think that those who refuse to be tested because they know they cannot afford the drugs and do not know how to acquire them are nothing more than suicidal? 

I ask you all of this with great respect but with great sorrow and confusion.   

jkinatl2:
I will elaborate, as much as I can.

The underground effort is a great way to bridge an awful gap between ADAP, often incompetent social workers, and ASO's. Especially for those who are already on medical regimen that cannot (or at least should not) be interrupted.

I think that by putting ourselves at risk, we can indeed break the system and call attention to the plight of those who are underserved by ASO and governmental/pharma assistance. I also think that such efforts are foolhardy, since they place the people who perform such acts at risk for OIs, resistance, and even death.

There is a better way. There HAS to be.

ONE: Make use of these temporary underground avenues. And react with swift certainty towards those who criticize them or who threaten them. I saw scant little of that when people came up against Lisa. And it broke her heart. hey threatened to turn her into the authorities, and threaten her very life (housing, disability, et al) if she continued.

SUPPORT those who want to help.

As far as not testing, that is still the main cause of AIDS in the developed world. Regardless of the ease of ability of meds and treatment, getting tested, knowing one's status, is STILL the best way we can beat this thing.

Do I think that those who cannot access ARV's are chips in gears? I do. In the worst possible way, I do.

But the way to avoid being that chip is to GET TESTED, and KNOW your status, and find a way to treatment. Screw it if it is illegal ( like transferring opened and unused meds is currently illegal) or even immoral ( like staying under the health department or insurance radar). BE HEALTHY. STAY WELL.

This is what is important. I am astonished that such admonishments are still necessary, or that they remain controversial. We live in a time there, at least in developed countries, not knowing your status is tantamount to suicide - and choice.


If I have offended, please let me know where and when.

I will always advocate for the best treatment for the most people, everywhere.

And I have a box of truvada, Isentress, Prezista, and Norvir. For anyone who needs that.

leatherman:

--- Quote from: jkinatl2 on June 09, 2010, 11:40:53 PM ---Well, I hardly think that using your life as a bargaining chip is the wisest possible idea.

The system IS broken, I admit. However, throwing ourselves into the gears to stop that system is NOT sabotage. It is suicide.

--- End quote ---
I'm sorry but I did't really understand the point you were trying to make with those comments either

in the rest of your post you made an awful lot of assumptions that just aren't true:
1) many people may not even have internet access to know of donated meds distribution programs like you mentioned.

2) many people do not live in a city/area with an ASO for any guidance or assistance.
I didn't have an ASO in my city of nearly 100,000 in Ohio for nearly 20 yrs to help me with any food stamps, ADAP, doctors, counseling, etc. It wasn't until nearly a year ago when I moved to SC that I had an ASO (that serves a tri-county area) to assist me

3) many people do not have support networks like you suggest

--- Quote from: jkinatl2 on June 09, 2010, 11:40:53 PM ---You have to keep your wits about you, and cultivate a strong network of support. One of the perks of disclosure is that when the chips are down, those who know what you are going through are likely to be in the position to be of some help.

--- End quote ---
I happen to now live in state where the majority of new AIDS cases (not just HIV+) are African-Americans with drug-addiction issues. I doubt they have a network of support to get supplies of HIV meds; much less a network to get unprescribed, free HIV meds. Most of those people don't have any support systems for any of their needs. For many of those people disclosure of their HIV status is a long way down on their list of things to do after confronting their drug addiction issues and the damage that has caused in their lives.

4) many people find out about their hiv status at a point where it has already progressed to AIDS

--- Quote from: jkinatl2 on June 09, 2010, 11:40:53 PM ---the alternative is going to the hospital when one comes down with PCP or another preventable OI. And then bankrupting themselves, losing all possessions and having to negotiate the quagmire of social security and disability when one is in no position to think clearly, or to wait.

--- End quote ---
exactly! today many people will be diagnosed with AIDS and go down that exact path and that's partially why we have an ADAP program. Not everyone is "lucky" enough to know years in advance of their impeding health crisis and has the ability to head it off. The scenario you describe is exactly how it happened to me in 1996 and is still happening to people now in 2010.

5) many people can and do lose their medical access

--- Quote from: jkinatl2 on June 09, 2010, 11:40:53 PM ---For the rest of your artificially lengthened life, as the slightest blip in income can strip all those lifesaving meds and doctors visits and food and shelter out from under a person.

--- End quote ---
exactly! NC and SC both are now throwing people out of the ADAP program. Those states have changed the requirements for eligibility. When a yearly review is made now, if you no longer qualify (by as little as $1), you lose your access to meds and have to find access to several thousands of dollars for meds before your last refill is gone. Of course, that means people end up with no treatment, causing resistance issues and health issues. In the past, this has even lead to deaths in SC and Kentucky.


I hope you can understand how your post was confusing. You talk about situations that do not apply to everyone who might need medical assistance or is even already on assistance. You seem to take for granted some of the hardships that people have in obtaining and keeping access to HIV meds; but then you go on to explain some of those very hardships.


--- Quote from: jkinatl2 on June 09, 2010, 11:40:53 PM ---Well, I hardly think that using your life as a bargaining chip is the wisest possible idea.

The system IS broken, I admit. However, throwing ourselves into the gears to stop that system is NOT sabotage. It is suicide.

--- End quote ---
People's lives are already in jeopardy and seem to be the currency some state governments are bargaining with. In trying to figure out the solution to this broken system, I don't see attending rallies or emailing legislators as sabotage of throwing myself into the gears.

leatherman:

--- Quote from: jkinatl2 on June 10, 2010, 02:39:36 AM ---The underground effort is a great way to bridge an awful gap between ADAP, often incompetent social workers, and ASO's. Especially for those who are already on medical regimen that cannot (or at least should not) be interrupted.

I think that by putting ourselves at risk, we can indeed break the system and call attention to the plight of those who are underserved by ASO and governmental/pharma assistance. I also think that such efforts are foolhardy, since they place the people who perform such acts at risk for OIs, resistance, and even death.

--- End quote ---
Not that those can't serve a purpose; but why go about things illegally and through "underground networks"?

Emailing legislators, demonstrating at rallies, reporting incompetent social workers, becoming client advocates on ASO boards, campaigning for better officials, etc - all those kinds of actions can "fix" the broken system without breaking laws or illegally dealing in medications.

I definitely understand that desperate times call for desperate measures; but rather than suggesting crimes, I think we should be trying to find solutions - good permanent solutions.


--- Quote from: jkinatl2 on June 10, 2010, 02:39:36 AM ---I think that by putting ourselves at risk, ... I also think that such efforts are foolhardy, since they place the people who perform such acts at risk for OIs, resistance, and even death.

--- End quote ---
are you suggesting that people go off meds in some sort of "protest" against the system? I know that's not what I understood anyone to be suggesting. All those proper legal actions I suggested put no one at risk; but hopefully remove the risk by getting ADAP access to the those who need the assistance.

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