Friday, January 27, 2012

What would Anderson Cooper say about the promised ADAP funding?

“Keeping them honest” – where is the money?

The ongoing saga over the number of Americans living with HIV/AIDS being denied access to care under the AIDS Drug Assistance Program (ADAP) belongs on CNN's Anderson Cooper 360. The crisis has been escalating for over two years, full of its share of empty promises, demands for fact-checking, and people -- especially patients -- wondering what to believe. "Keeping them honest" couldn't sum it up any better.

Almost two months ago on World AIDS Day, December 1st 2011, President Obama thankfully promised an additional $35 million dollars that would go to state ADAPs. This money should have already been rolled out. However no state has yet to see any of these additional funds, and the frustration level in the HIV/AIDS community is building.

Also building are the ADAP waitlists in America; which on January 19th, 2012 totaled 4,611 individuals across 12 states waiting to receive the anti-retroviral medication they need to stay alive, remain healthy, and productive. While this number is down from a high of nearly 10,000 last year, once again, the number has steadily been on the uptick.

So what is the hold up? Where is this money? Where is it coming from, and when will it be allocated to the states?

The $35 million dollars is reallocated HHS (Health and Human Services) funds, but before the funds can be reallocated the OMB (Office of Management and Budget) needs to approve. Apparently, saving lives is not at the top of the OMB list. As PLWHA continue to wait for these funds more people will become infected, more people will be put onto wait-lists, states will try to change criteria making it difficult for people to get medicine, and sadly people will likely die.

Once approved by the OMB then states will begin the competitive process of requesting this additional money. The most competitiveness will be among states with waiting list and already implemented cost containment measures. This all takes time. A current guestimate on when this money may start to roll out is not until July 2012!! That would be 7 months from the date of the announcement made on December 1st, 2012!

Did you know on the first day of American intervention in Lybia it cost US tax payers $100 million dollars, and over the three month period from April – July a total of nearly $1 billion was spent on the war with Lybia? Why will it take 7 months to distribute $35 million in reallocated HHS funds to states with people who continue to wait for the medicine they need?

Since Obama took office a robust national dialogue on HIV/AIDS has taken place, the National HIV/AIDS strategy was developed, his administration has increased overall funding to record levels, he re-authorized the Ryan White care act, and eliminated the travel ban on HIV positive individuals entering the United States. He has done a lot of good when it comes to HIV/AIDS, but more must be done here at home. With the 2012 International AIDS Conference coming to Washington, DC, isn't it embarrassing for the United States of America to deny access to care to thousands of patients who desperately need it?

“We are at the beginning of the end of this epidemic” the President said on World AIDS Day 2011, and said on this day that his vision was that “…..every American can get access to life extending care” but that vision, neither is hope in insight for the thousands of Americans that continue to be on ADAP wait-lists.


Henry said...

Totally agree I am one that once again have gone a full month without meds.. Because I can't afford them.. I have to take mandatory holidays due to cost and cut my dr.s visit from about 4 a year to 2 a year. I still do not have medicare till october 2012 and do not qualify for medicaid becuase my income is above is just above the NC requirement for adap and there is a waiting list anyway.. Please I do not want to die.. I wanted to get better to work a normal job like I did for over 28 years.. Now I can't.. Thanks for listening! Henry Calderon Jr. Gastonia, NC

Anonymous said...

please apply to the patient assistance programs for each of your medications, they can be located on line

Cheryl said...

Please apply to the patient assistance program for each of your drugs as you should qualify, search them by drug name and aptient assistance program on internet

Anonymous said...

From everything that Henry said, there is no reason to be taking drug holidays or going a month without meds. If the income is just below the NC ADAP eligibility standards, then patient assistance programs will serve him. I do not in any way belittle this crisis we are in, but there are some safety nets below ADAP (like PAP), so take advantage of them and keep fighting for funding for ADAP.

Jim Driscoll said...

We are all wondering why the extra $35M has not cut the ADAP WLs. An even bigger question involving twice the amount of money is, why are the WLs again expanding after the new round of pharma rebate concessions valued at ca. $70M for 2012? The community needs and deserves more transparency from the AIDS Crisis Task Force that negotiates rebate deals in secrecy with the pharmas. At least a third of the theoretical "cost" of ADAP drugs is "paid" by rebates. The window on the government contributions is smudged in spots, but we still get a partial view. The window on the rebates remains shrouded by a heavy wool curtain. ADAP patients need and deserve better communication from the Task Force on what to expect from the rebates. Given the current fiscal crisis, the hard reality is that the majority of new drug needed for new patients must be provided not by more government funding, but by more generous rebates.

Garry said...

I feel your pain brother. I have been on the North Carolina ADAP program for two years. My case manager has told me that my current re-certification may get rejected as with the new cost of living increase my income will be above the 125% of federal poverty level. I do not know what I will do either. I can tell you this, our representatives at both the state and federal governments will not answer a letter if you contact them. I wish you well.
Garry Singletary
Elizabeth City,NC

Henry said...

Maybe I said it wrong I am not just under, I am just above the poverty level at 2x that to me is very little income because other states have up to 3x poverty.. Honestly how can yo eat, pay rent, insurance and afford transpotation, clothes and hygiene stuff and have 125 percent or less! NC you are a joke.. And the monies not showing up make it worse.. No I do not qualify for pap either my case worker at duke university told me I do not qualify.. So with insurance I have to buy mandatory 3 month supply at 578 dollars plus all my side affect preventive meds so my total bill is almost 780 bucks.. Oh yeah I pay insurance and copays plus deductables and drs admins refuse to see you unless you have settled in full previous bills.. So out of pocket I spend about 3000 plus copays and meds.. I need a dental surgeon but I can't afford that either.. Do I need to say more... Do not tell me apply.. I have tried and get turned away!!! Thanks.. I might move to Minn. Where after 6 months I get help.. Here I have been trying over 2 years in NC . Thanks my fellow HIV members and advocates! We have to fight!

Henry said...

And I agree I hae written.. To our reps and to the white house!! And even thou they make believe publicly that they care, they infact are hipocrits, and bigots of our plwa or hiv infected community! They do not reply at all.. I guess a half a million votes do not matter! Too bad we are not all united to go march down to washington DC and camp out. Becuase a couple of dozen people don't even make the news!

Eddie Hamilton said...

I must agree with Jim Driscoll's post. The obfuscation of ADAP and Ryan White Part B expenditures in general has been a travesty.

The rebates are like coupons for products that in some cases that have never been redeemed by some states for one reason or another.
In addition, my research has shown that different states get different rate of rebate amounts for the same drug.

To be honest, the rebate system should be eliminated, and the prices lowered to those levels period. The IRS should ban those writeoffs because they have been appear to have been abused.

Henry, if you income is just above the NC limit, you most certainly qualify for Ryan White Part B case management which can assist you through the PAP Maze. If people think going through PaP's is easy, they ARENT!

Garry, the PFL limits move in tandem with the S.S. cost of living increase, so if you have qualified before, you should still qualify now.