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Author Topic: ADAP Watch List Update January 2013  (Read 1454 times)

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Online leatherman

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ADAP Watch List Update January 2013
« on: January 22, 2013, 03:05:19 PM »
As of January 17, 2013, there are unfortunately still 51 individuals on ADAP waiting lists in four states. While Florida and Louisiana have not formally closed their waiting lists, they are currently enrolling new clients into their program. Some more good news is that North Carolina has reestablished their formulary composition to the same level prior to the ADAP crisis of 2010.

However, the potential for new waiting lists developing this ADAP FY2012 (ending 3/31/13) continues. The federal government continues to operate on a 6 month Continuing Resolution through March. It is not known when Congress will take action on funding the government through the remainder of FY2013 or at what levels. The ongoing fiscal cliff negotiations and the possible sequestration impacts on ADAP are not yet known at this time.
 

ADAPs with Waiting Lists as of January 17, 2013
51 individuals in 4 states


STATEAMOUNTCHANGE
Florida00
Idaho21+6
Louisiana0-19
South Dakota30+6

ADAP January 17th Watch List
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline oksikoko

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Re: ADAP Watch List Update January 2013
« Reply #1 on: January 31, 2013, 06:24:20 PM »
Wow.

I did some Googling, but you seem to have it at your fingertips: do these states have monetary caps or do they only let a certain number of people on? If you're on the waiting list, do you just wait until somebody ahead of you dies or gets better insurance? Are there any programs or nonprofit groups or people who help these 51 people specifically?  :-/

We need an underground railroad kind of thing, either to get drugs out or to get people into better states. I feel terribly guilty right now. I paid for the first bottle, Gilead paid for the second, but the rest will be provided by ADAP, and I contribute nothing to society. One of these people probably could make better use of my pills. :-/
Code: [Select]
2013-10-03:                ☣ VL (?) off treatment ☣ CD4 (?) off treatment
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

If no one complains, nothing will ever change.

Online leatherman

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  • Google and HIV meds are Your Friends
Re: ADAP Watch List Update January 2013
« Reply #2 on: January 31, 2013, 08:41:53 PM »
do these states have monetary caps or do they only let a certain number of people on?
ADAP is a part of the Ryan White program. Along with an amount of money that the federal government provides, each state is supposed to supply money into funding ADAP. The federal government does not guarantee to fund any state's complete ADAP bill. Because some states have not supplied very much money, there has been a funding gap to cover everyone which has created waiting lists in some states.

Last summer (2010) there were 14 states with lists and nearly 10,000 people on those lists.

As an example of funding issues, 2 years ago the SC House voted a budget that totally defunded ADAP. Thankfully the Senate added funding back. However, there was not enough money (with the funding from the feds and what the state had budgeted) to totally fund meds for all the people that were physically and financially eligible, and hence the state had a waiting list. (Sadly there was one person who passed away that year while waiting on medications)

If you're on the waiting list, do you just wait until somebody ahead of you dies or gets better insurance?
yep. you wait until someone dies and frees up a slot; or you hope that the feds (do as they have several times) pass a supplemental funding bill giving the states more money to cover the people currently on the waiting list - and the people who have yet to be diagnosed this year who will need and will be eligible for ADAP

Are there any programs or nonprofit groups or people who help these 51 people specifically?
Thankfully, very few people go completely without meds. Most states have charities and ASOs (non-profit AIDS Service Organizations) that have been stepping in to help. (when flordia totally ran out of money with 3 months to go that year, a SC non-profit med supply company stepped in and provided meds for 6000+ people) However, this is an unguaranteed month-by-month or year-by-year stopgap measure. While these people may be getting temporary help elsewhere, they remain on the waiting list, which guarantees meds for a year at a time.

We need an underground railroad kind of thing, either to get drugs out or to get people into better states.
frequently I counsel people who are contemplating on relocating - especially if they use ADAP in their current state - to do their due diligence and research first. While you may want to move to a certain state, if there is a waiting list, your current ADAP does not transfer and you would go to the end of the line in the new state.

This is a problem of sorts that afflicts many people with HIV. With less than 2 million people in the states with HIV, not all cities (and towns and villages) provide infectious disease or HIV doctors and treatment. People living in rural areas often have to travel many miles (sometimes 100s!!) to get to an area that has HIV treatment. Some times to get proper treatment for HIV, people have to move or travel great distances - or not move at all!!

I contribute nothing to society. One of these people probably could make better use of my pills. :-/
Please don't think that way. Everyone should have the right to life-saving medications. That should just be a basic human right. You deserve that and you are worth that.

I would suggest that if you would like to feel like you are contributing more to society, you could become an advocate for ADAP and/or HIV prevention and education. Many people on ADAP are busy holding down jobs and are unable to take the time to go speak to their state legislators about the need for ADAP. You could be a surrogate voice for those people. Or you could help with HIV prevention/education to hopefully prevent people from being HIV positive and even needing the help of ADAP.

I am part of the SC HIV/AIDS Care Crisis Task that was formed 6 yrs ago when the state first started their ADAP waiting list. We regularly hold press conferences, rallies, write legislators, educate and train others to be advocates, and speak one-on-one to Legislators explaining and educating them about HIV, the importance of medications, ADAP, the cost saving of treatment, the HIV transmission reduction from treatment, etc.

After many years of advocating we have changed our Legislators' minds from defunding ADAP as I mentioned earlier to overruling the Governor, vetoing her budget and giving $1.4 million a year to ADAP recurring for four years with an additional $1 million this current fiscal year. WooHoo!

Now the task force is upgrading its mission to not only keep explaining the importance of meds and ADAP; but we are trying to educate our legislators (and people throughout the state via community forums we are sponsoring) about the need for Medicaid Expansion, which is an "optional" portion of the Affordable Care Act. Next month (feb 19th) we will be speaking to Legislators in the State House (calling them out from session) and in their offices about ME and ADAP, leaving them with facts sheets about those programs - and "thank you" cards for their help in funding ADAP for these 4 yrs.

I hope this all helped, answered your questions and gave you some ideas. If you have any more, please ask away.  --- Just don't feel bad about taking advantage of a program that is there to help you stay alive!
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline oksikoko

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Re: ADAP Watch List Update January 2013
« Reply #3 on: January 31, 2013, 09:40:36 PM »
Thanks for the detailed and thorough reply! I had a feeling it would be better to get it from you than to piece together a bunch of stuff from websites, so I hope you don't mind. Let's see, scrolling though you answer...

yep. you wait until someone dies and frees up a slot

This is a pretty crappy system and seems to guarantee more spending later since people will get sicker than they had to. The worry created by instability alone will make you sick. I hadn't even finished my first bottle when I realized the second may not be coming, and I lost a few night's sleep over that alone... To deal with that every month... :( It sounds like things are getting better, though, right? Even if too slowly?

People living in rural areas often have to travel many miles (sometimes 100s!!) to get to an area that has HIV treatment. Some times to get proper treatment for HIV, people have to move or travel great distances - or not move at all!!

I am lucky to have been diagnosed in NY. I had wanted to get out of here but felt trapped these last few years. Now I'm still trapped, but I'd rather be trapped here under these new circumstances. I can walk to all the various places I go for this or that service. It's actually quicker to walk from where I am right now.

I would suggest that if you would like to feel like you are contributing more to society, you could become an advocate for ADAP and/or HIV prevention and education. Many people on ADAP are busy holding down jobs and are unable to take the time to go speak to their state legislators about the need for ADAP. You could be a surrogate voice for those people. Or you could help with HIV prevention/education to hopefully prevent people from being HIV positive and even needing the help of ADAP.

Well, I just meant, it seems unfair to distribute by state. Yeah, we all deserve good healthcare, but I'm pretty sure one of, if not most of, those 51 deserve it more than me or have more reason to be here than I do or have people who depend them which I don't or have more potential to do something with their lives. If we're gonna portion it out, at least maximize utility of available funds.

As for being an ADAP surrogate, trust me, no one wants people like me speaking for them, and I'm fairly certain no agency would let me work with them. It's all I can do just to get them to take me as a client at the moment. ;) But I'll make you a deal, since you were so thorough in your answer. I've got a small housing crisis going on here, so I'm not sure where I'm gonna be sleeping throughout February. But if this gets settled before I've died, the first thing I'll do is find some way to advocate for or help the cause of stable ADAP funding. I've never worked for anything except education and nonprofits, so it's not that much of a stretch. Two-thirds of my MA are useless, but one-third was pedagogy. And I'm unemployed right now because the LGBT organization I worked for shut down. If I ever do find work again, it'll probably be in the nonprofit sector.
Code: [Select]
2013-10-03:                ☣ VL (?) off treatment ☣ CD4 (?) off treatment
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

If no one complains, nothing will ever change.

Offline oksikoko

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  • Posts: 680
  • Writing the congressman again
Re: ADAP Watch List Update January 2013
« Reply #4 on: February 23, 2013, 06:06:29 PM »
As for being an ADAP surrogate, trust me, no one wants people like me speaking for them, and I'm fairly certain no agency would let me work with them. It's all I can do just to get them to take me as a client at the moment. ;) But I'll make you a deal, since you were so thorough in your answer. I've got a small housing crisis going on here, so I'm not sure where I'm gonna be sleeping throughout February. But if this gets settled before I've died, the first thing I'll do is find some way to advocate for or help the cause of stable ADAP funding. I've never worked for anything except education and nonprofits, so it's not that much of a stretch. Two-thirds of my MA are useless, but one-third was pedagogy. And I'm unemployed right now because the LGBT organization I worked for shut down. If I ever do find work again, it'll probably be in the nonprofit sector.

Damn me and my big mouth. (And the bookmark I made of this thread.) ;)

So, leatherman, I'm out of crisis, and this wasn't an empty promise. The onus is on me to find ways to help, but you're keyed in pretty well. Do you (or anyone) know a good place to start? I'm in NYC, have Metrocard, will travel.

Code: [Select]
2013-10-03:                ☣ VL (?) off treatment ☣ CD4 (?) off treatment
2013-10-03:                ☣ VL (=) undetectable ☣ CD4 (+) 1105
2013-05-23:                ☣ VL (=) undetectable ☣ CD4 (-) 945
2013-02-25:                ☣ VL (-) undetectable ☣ CD4 (+) 1123
2012-12-16: Enter Stribild
2012-11-20: HIV+           ☣ VL (→) 132,683      ☣ CD4 (→) 920
2012-04-01: HIV-
Dates in this signature file conform to ISO 8601. ;-)

If no one complains, nothing will ever change.

Online leatherman

  • Member
  • Posts: 6,189
  • Google and HIV meds are Your Friends
Re: ADAP Watch List Update January 2013
« Reply #5 on: February 23, 2013, 07:46:24 PM »
So, leatherman, I'm out of crisis, and this wasn't an empty promise. The onus is on me to find ways to help, but you're keyed in pretty well. Do you (or anyone) know a good place to start? I'm in NYC, have Metrocard, will travel.
I don't know anywhere right off the bat in NYC but I will check on this for you. I'm sure a local ASO, RyanWhite agency or some place like that might be able to use you or find a place for you to volunteer for what you'd like to do.

However, I read that things are getting more stable for you right now; but before you go rushing off to volunteer, please make sure that things are actually better for yourself. Trust me. There will be volunteer work and advocacy needs as long as there are sick people, people getting newly infected and no cure for AIDS. There'll be plenty of time for you to help out; but you really need to make sure things are better and more stable for yourself.

As you've recently seen advocating for your own self is often the hardest and more necessary thing to do. Make sure that's always your first priority for 2 reasons. 1) You're worth it and 2) just like the airlines say to put on your air mask first, it's easier to help other when you are ok and safe first.

now. hopefully we can get some new yorkers in here to help find you a place to volunteer, and in the meantime I will ask some of my friends to see what I can find out for you. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

 


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