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Author Topic: Great news: after 5 yrs, the ADAP waiting lists have been eliminated!  (Read 2083 times)

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Online leatherman

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A GREAT message from http://www.NASTAD.org today

November 25, 2013, Washington, DC Ė According to NASTADís latest ADAP Watch, released today, there are no individuals on AIDS Drug Assistance Program (ADAP) waiting lists in the United States. This represents a significant milestone as there have been individuals on ADAP waiting lists since January 2008. The last state to have a waiting list, South Dakota, was able to transition the remaining 11 individuals on their waiting list into their ADAP program on November 21. Earlier this month, Alabama and Idaho eliminated their waiting lists and lifted their enrollment caps.
 
While the elimination of ADAP waiting lists is good news, the U.S. Center for Disease Control and Prevention (CDC) estimates that only 28% of the more than one million individuals in the U.S. who are living with HIV/AIDS are getting the full benefits of treatment (i.e., undetectable viral loads). That means 72% of individuals are not yet in care or receiving the full benefits of antiretroviral (ARV) treatments. In addition, and as a result of the previous fiscal crisis, many ADAPs have reduced and/or eliminated some services and lowered financial eligibility levels. These reductions in services have limited the number of clients that can be enrolled and sometimes limited which medications they can receive. These limitations and the large number of individuals not on ARV treatment represent a large unmet need that is not captured in the number of individuals on ADAP waiting lists. It is for this reason that continued funding and pricing stability are critical moving forward in order for ADAPs to maintain services and enroll new clients who are in need of ARV treatment.
 
The federal government is currently funded under a FY2014 continuing resolution (CR). This CR funds the federal government at FY2013 post-sequestration spending levels through January 15, 2014.  Unless Congress provides an alternative to the sequester put in place under the 2011 Budget Control Act, further cuts may occur January 15, 2014, likely under another CR. These potential cuts could lead to states reinstituting waiting lists and implementing other cost containment measures.
 
The elimination of ADAP waiting lists was possible in part due to ADAPsí receiving FY2013 Emergency Relief Funds (ERF). FY2013 ERF consisted of a total of $75 million distributed to states that demonstrated financial need as a result of waiting lists or other cost-containment measures. Despite sequestration cuts to ADAP formula funding awards in FY2013, ERF funds allowed ADAPs to maintain their provision of ARV medications to individuals in need. In addition, continued supplemental rebates and discounts and price freezes on medications negotiated between the ADAP Crisis Task Force and pharmaceutical companies allowed ADAPs to maintain stability in their expenditures.
 
There have been two periods in the 23 year history of ADAPs when waiting lists have existed as a means of cost-containment for fiscally constrained programs. The first waiting lists appeared in 2002 and lasted for nearly five years. Shortly thereafter, NASTAD convened the ADAP Crisis Task Force in order to negotiate supplemental rebates and discounts with pharmaceutical companies to help alleviate the crisis. The second period of waiting lists began in 2008, with significant increases occurring in 2010 mainly as a result of the nationís economic recession. ADAP waiting lists reached an all-time high of 9,298 individuals in September 2011. The number of states with waiting lists fluctuated throughout both periods, with a high of 13 states having waiting lists in place. 
 
Each crisis period ended in part as a result of presidential initiatives creating new emergency funding opportunities for ADAPs. President George W. Bush provided $20 million in emergency funding in FY2004. President Obama has provided $35 million for the past three fiscal years in ERF, despite difficult fiscal conditions, in an effort to eliminate existing waiting lists and prevent additional cost containment measures, including waiting lists.
 
ADAPs play a critical role in providing ARVs to people living with HIV/AIDS most in need.  Seventy-eight percent of ADAP clients have incomes at or below 200% of the Federal Poverty Level (FPL), or $22,980, including 59% at or below 138% of FPL ($15,856), the eligibility threshold for Medicaid expansion under the Affordable Care Act (ACA).  In 2011, approximately 206,000 individuals received services from ADAPs, representing about 19% of those estimated to be living with HIV/AIDS in the U.S.
 
ADAPs are a discretionary grant program funded through the Ryan White Program. Because ADAPs are not entitlement programs, funding levels are not based on the number of people requiring prescription drugs or on the cost of medications. ADAP enrollment is never static. In addition to federal funding, many ADAPs also receive state general revenue support and other funding, but these sources are highly variable and dependent on local decisions and resource availability.

About NASTAD

Founded in 1992, NASTAD is a nonprofit national association of state and territorial health department HIV/AIDS program directors who have programmatic responsibility for administering HIV/AIDS and viral hepatitis health care, prevention, education, and supportive services programs funded by state and federal governments. For more information, visit http://www.NASTAD.org
 
About the ADAP Crisis Task Force

The ADAP Crisis Task Force was formed in December 2002 by NASTAD and a group of state AIDS/ADAP directors concerned about the fiscal crisis facing ADAPs nationwide. The Task Force works in partnership with manufacturers of ARV and other HIV-related medications to reduce drug costs and improve access to medications for clients in the nationís ADAPs. It is estimated that Task Force agreements with companies have saved ADAPs approximately $1.8 billion since 2003. NASTAD provides logistical support to the Task Force.
leatherman (aka mIkIE)


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

Offline marcmoral16

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Re: Great news: after 5 yrs, the ADAP waiting lists have been eliminated!
« Reply #1 on: November 26, 2013, 01:23:39 AM »
This is great news!

Thanks for it all.
Tested Positive Jan 16 2013
CD4 119 6% VL 23980
Started Complera Feb 2013
March CD4 199 9% VL 1000
May CD4 255 12% VL 334
June CD4 284 15% VL 172
Switched to Stribild middle June 2013
July CD4 325 22% VL 51
October CD4 341 23% VL UD!!
Jan 2014 CD4 343 20% VL <20
July 2014 CD4 450 26% VL <20

Offline emeraldize

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Re: Great news: after 5 yrs, the ADAP waiting lists have been eliminated!
« Reply #2 on: November 26, 2013, 06:10:31 AM »
Thank you for posting.

Offline gadawg1979

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Re: Great news: after 5 yrs, the ADAP waiting lists have been eliminated!
« Reply #3 on: November 28, 2013, 02:48:47 AM »
This is amazing news and is long over due.
Diagnosed March 2012
Initial CD4- 156 VL 200K (started Complera) Genotype test no resistance
First labs on meds CD4- 246 VL 2K Taken after 30 days on Complera
90 Day labs VL 306 No CD4 Drawn
8/21/2012 CD4 474 VL Undetectable (40) %20.6
11/27/2012 CD 4 522 VL Undetectable (40)
2/14/2013 CD 4 464 VL Undetecable (30) 19.6%
6/8/3013 CD 4 528 VL Undetectable (30)
9/24/2013 CD 4 546 VL Undetectable (40)
1/30/2014 CD4 560 VL Undetectable (40) 22 %
6/19/2014 CD4 584 Vl Undetecable (30)

Offline metekrop

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Re: Great news: after 5 yrs, the ADAP waiting lists have been eliminated!
« Reply #4 on: December 02, 2013, 12:35:09 PM »
It is good to hear that ADAP list gone to zero for the first time in history.  But still the situation in this country is scary.  So, is there any way that people would not be going onto the ADAP list again either by losing their current insurance or states failure to accommodate new HIV patients on ADAP.  What is the guarantee for the future of this program for HIV victimes. Thank you.
Diag on Dec 8, 2000, CD 440 VL 44K, No Meds
Dec/08 - Feb/09 CD< 50 & VL >500k hosp'z.
St. Atripla - July/09 CD 179, VL 197k
Oct/09 CD 300 VL UD Chol 267
Mar/10 CD 468 UD, Ch 220
Aug/10 CD 460 UD, Ch 195
Dec/10 CD 492 UD, Ch 172
Mar/11 CD 636 UD, Ch 201
Aug/11 CD 530 UD, Ch 98
Jan/12 cd 616 UD, ch 189
Jul/12 CD 640 UD, Ch ?
Dec/12 CD 669 Ud, Ch 125
May/7 CD711 Ud, Ch?
Nov/ 22 663 UD, Ch,
April 17 CD 797,
Oct, 14 CD 810 UD

Online leatherman

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Re: Great news: after 5 yrs, the ADAP waiting lists have been eliminated!
« Reply #5 on: December 02, 2013, 09:46:05 PM »
So, is there any way that people would not be going onto the ADAP list again either by losing their current insurance or states failure to accommodate new HIV patients on ADAP.
exactly!! In states that did NOT implement the Medicaid Expansion Program (which though like regular Medicaid is not the same old Medicaid program. the current program is reactive, this new ACA version is proactive... but that's another discussion LOL), there are people who will need to now purchase insurance to get coverage but who will not make enough to purchase insurance. It's a new doughnut hole and I have several friends who will be falling into this hole. ADAP is probably going to have to help out, and that'll put a greater strain on that budget.

Waiting lists again?? Maybe. Only time will tell but even with the ACA many hiv positive people, and others with chronic illnesses, are still suffering and costing the system a lot more than if they were treated.
leatherman (aka mIkIE)


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

Offline ROOR64

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Re: Great news: after 5 yrs, the ADAP waiting lists have been eliminated!
« Reply #6 on: December 22, 2013, 02:14:13 AM »
I lost my healthcare at the end October. So I went in to get checked out as I had been a little 'off' all year since my cold/flu that I had in January. I was diagnosed in early November. I'm straight. I only had 1 partner in forever and that was the fling I had  about 2 months before I got the cold/flu in Jan. I didn't even know her name. 
      I was in shock.(still am). I haven't and won't tell anyone I know about this. I am a guy of little means and my little checking account is always in jeopardy of overdrafts but I've only had two of them in 6 years. I'm on fixed income and I'm thinking that I'm going to have to go to where my county services stuff is, which is like 20 miles away. I have a car that just rolled over 200,000 miles that eats gas and is ready to give up and die, you see. Since I no longer had healthcare I was given some phone numbers to call.
      Well when I get ahold of people they have me go to the nearest social services place which is only 7 miles away. I filled out some papers, signed my name on some other papers and then I was told that I had to wait for acceptance via receiving a card(or a declined notice) within two weeks. That was on a Wednesday. The following Wed. I had my ADAP card. 7 days. It was pretty fast. THANK GOODNESS!!!! No waiting at all here. It was an express line actually. The cost was nothing out of pocket. TGIF!
       I just started my treatment tonight with Atripla. Jeez! That pill is HUGE! (as well it should be, I suppose) My equilibrium was screwed for four hours and then it went away and I feel fine. I'm an official atripla junkie now :o    I'm glad this site, ADAP and the Ryan White Foundation are here-they helped me through some dark days recently. I am diving in and moving forward because I have to. Now I just have to get some kind of support network and have an extra set of friends so I can talk about this curse and SOMEHOW try to turn it in to a blessing.

Online leatherman

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Re: Great news: after 5 yrs, the ADAP waiting lists have been eliminated!
« Reply #7 on: December 22, 2013, 10:20:51 AM »
I'm sorry you had to look for us, Roor; but I'm sure glad you found us. You'll find a lot of friends, support and knowledge here. If you ever need something, just start up a new thread and someone here is guaranteed to answer back. LOL

Wow! about your story. I'm sure glad you got tested. Untreated HIV is a very bad thing  ;) And what a great story to hear about you and ADAP! It sounds like the program is doing exactly what it supposed to do - help someone out in a tough situation to get access to meds/treatment as soon as possible regardless of your financial hardships.

Oh yes, transportation is often an issue. It often is for people who aren't living in a metro area. Is the social service place you went to an "AIDS service organization" (ASO)? I ask because agencies like that sometimes are able to arrange transportation or provide travel assistance (ie gas cards). It might be something to check into ;)

Atripla is a great drug (with only a few side effects) so I'm sure you'll see your viral load decline and your cd4 count improve in no time at all. WooHoo for ADAP and Best Wishes to You!  :D
leatherman (aka mIkIE)


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

Offline ROOR64

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Re: Great news: after 5 yrs, the ADAP waiting lists have been eliminated!
« Reply #8 on: December 22, 2013, 09:32:23 PM »
I'm sorry you had to look for us, Roor; but I'm sure glad you found us. You'll find a lot of friends, support and knowledge here. If you ever need something, just start up a new thread and someone here is guaranteed to answer back. LOL

Wow! about your story. I'm sure glad you got tested. Untreated HIV is a very bad thing  ;) And what a great story to hear about you and ADAP! It sounds like the program is doing exactly what it supposed to do - help someone out in a tough situation to get access to meds/treatment as soon as possible regardless of your financial hardships.

Oh yes, transportation is often an issue. It often is for people who aren't living in a metro area. Is the social service place you went to an "AIDS service organization" (ASO)? I ask because agencies like that sometimes are able to arrange transportation or provide travel assistance (ie gas cards). It might be something to check into ;)

Atripla is a great drug (with only a few side effects) so I'm sure you'll see your viral load decline and your cd4 count improve in no time at all. WooHoo for ADAP and Best Wishes to You!  :D

       Thank you! I need to hear things like that right now.  As for if the place is an ASO, I am not sure but the girl assigned to me gave me a six $10 grocery store gift cards right after thanksgiving, so I assume it is if the assistance thing is true. They have been GREAT so far!
       I must admit that I suddenly need serious help when just a few months ago I was completely independent(barely, but still...)
       :)  And, again I really appreciate the response post and the cheerfulness. It helps!

Offline ARMANDO

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Re: Great news: after 5 yrs, the ADAP waiting lists have been eliminated!
« Reply #9 on: January 23, 2014, 07:42:15 AM »
what are the eliglbilty requirments to get on ADAP?

Offline Ann

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Re: Great news: after 5 yrs, the ADAP waiting lists have been eliminated!
« Reply #10 on: January 23, 2014, 09:25:40 AM »
what are the eliglbilty requirments to get on ADAP?

They vary from state to state. You'll either have to let folks know what state you're in so they can advise you, or you'll have to do some online research focused on your state, or go to your local ASO and ask them for assistance.

You can find your local ASO by putting your zip code into the poz.com's Health Services Directory.

Hope this helps.

Ann
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Online leatherman

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Re: Great news: after 5 yrs, the ADAP waiting lists have been eliminated!
« Reply #11 on: January 23, 2014, 12:20:00 PM »
if, like some people, you don't have an ASO in your area (you might just have an agency that administers ADAP but doesn't have case management), google u your state name and the word "ADAP". Check out your state's governmental website that will have eligibility info, applications, etc.

eligibility requirements are usually HIV positive, medications are medically neccesary, and your income is anywhere from 100 - 400% of Fed Poverty Level (some states are a lot more generous than others who will only assist when you're half dead and poorer than a church mouse LOL).
leatherman (aka mIkIE)


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

 


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