LGBT POV

UPDATED: ASSEMBLYMEMBER JONE’S FULL LETTER AT THE END

What California AIDS activists fear the most may be about to happen: it appears that California Gov. Arnold Schwarzenegger has “blue penciled” cuts to the state’s AIDS Drug Assistance Program.  Assemblymember Dave Jones, who chairs the Assembly Health Committee, held a special public hearing Dec. 1 in Los Angeles regarding ADAP funding. Today he issued a letter, signed by 37 colleagues, asking the governor to restore the cuts before he submits his budget next month.

Here’s a press release just issued by Jone’s office:

Assemblymember Dave Jones, the Chair of the Assembly Health Committee, today announced that 37 members of the State Assembly have joined him in signing a letter calling on the Governor to restore, in the budget he is about to release, “blue pencil” cuts he made to HIV/AIDS funding including funding for the AIDS Drug Assistance Program.

In a letter delivered to the Governor, the legislators argued that the Governor’s Recommended Budget, which will be released in early January, should restore recent cuts and maintain full funding for the program, which provides life-saving medications to more than 35,000 Californians.

The letter argues:

• Additional cuts will deprive people of the drugs they need to stay alive.
• Further cuts to ADAP will put participants at risk for severe illness or death.
• Each new HIV infection that is prevented saves hundreds of thousands of dollars in treatment down the road.

“The Assembly Health Committee’s World AIDS Day hearing highlighted the devastating effect of the Governor’s cuts,” said Jones, the chair of the Assembly Health Committee. “Lives are on the line. The Governor must restore these line-item vetoes and fully fund ADAP for 2010-11.

On World AIDS Day, Jones held a public hearing in Los Angeles to discuss the issue of ADAP funding in the context of the state’s current fiscal crisis.

California faces a $21.7 billion deficit over the next 18 months and legislators are scrambling to find ways to cut and save money. HIV/AIDS activists fear that the state ADAP are on the chopping block.

More than 35,000 people are covered by ADAP statewide and approximately 42 percent of them live in Los Angeles County, which is why, Jones said, he brought the information meeting to the Ronald Reagan building in downtown LA.

Jones repeatedly expressed disappointment that neither the governor nor the state Office of AIDS sent a representative to the hearing. There were many questions he and the 17 invited speakers wanted to ask. After the hearing, he told me:

“This is a crucially important issue. I think it was a missed opportunity to hear directly from people with HIV/AIDS and also those who provide services for people with HIV/AIDS. So it was a great disappointment that no one from the administration was here.”

Jones also told me that he was “surprised” to hear from Craig Vincent-Jones, Executive Director of the LA County Commission on HIV, that the state Office of AIDS had failed to provide important requested data, which, Jones said, would be “very helpful in navigating through and managing through this terrible fiscal crisis where we’ve got to do more with less, unfortunately.”

Each of the speakers had a compelling story or presentation.

Whitney Engeran-Cordova, Director of the Public Health Division for AIDS Healthcare Foundation (AHF) said:

“[L]ast year’s budget reductions to the Office of AIDS were a devastating blow to the infrastructure serving our fellow citizens that had been built for 20 years. We have yet to fully comprehend or measure the cost of this in terms of the lives affected and the new infections that could have been prevented.

In the last 8 years, the number of people accessing the program has grown by 49%. In that same time, the average spending per person for anti-retroviral medication has increased by 77%. And the total ARV expenditures have grown by 165%. This trend is simply unsustainable and to arrest it will require difficult choices and tough conversations.”

He added that government must ask more of the pharmaceutical companies:

“they must give back more in rebates, or lower prices or we have to do it for them.”

Richard Zaldivar, Executive Director of The Wall Las Memorias was there with the late Pedro Zamora’s sister Mily and his niece Melisa, who had just come from LA City Hall where the city council declared it “Pedro Zamora Day.” Zamora, the young star of MTV’s “The Real Life” became a strong advocate for HIV prevention among youth before he died of AIDS and several speakers bemoaned the cuts to HIV prevention.

Several people living with HIV/AIDS spoke about how the AIDS medications directly impacted, and in some cases – saved, their lives.

Luis Rodriguiz said he was unemployed, living off food stamps, suffering from depression, high blood pressure and respiratory issues and still grieving over the loss of two lovers to AIDS – and he added choking up – his cat died the night before:

“There is no way for me to get the medications I need without AHF and ADAP. And I want to live another day.”

Dr. Jonathan Fielding, Director of the LA County Department of Public Health, was clear about the crisis. Fielding said:

“Any failure jeopardizes the health of people with HIV/AIDS…We must find ways to sustain ADAP” at a time when there are no easy budget solutions. “It would be terrible, unthinkable to balance the state budget on the back of the most needy….This is a time to be creative and look at all options.”

Fielding talked about how the federal Medicare prescription drug plan Medicare Part D essentially discriminates against people with HIV/AIDS because, although people with HIV/AIDS who qualify for ADAP also qualify for Medicare – they must still pay substantial out-of-pocket expenses.

Here’s how Assemblymember Hector de la Torre explained it later:

“Medicare covers prescription drugs up to $2,000 of expenses. Then it ends. And then (the coverage) picks up again at $5,000. That’s the hole in the donut. So from $2,000 to $5,000 – you’re on your own. Once you’ve spent $3,000 on top of the $2,000 they’ve spent, then they pick it up again. So if you have some nominal number of prescriptions that you have to have covered – they’ll pay for those. And if you’re really, really sick and have really expensive prescription drugs, they’ll cover those. But if you’re in the middle, you’re screwed.”

Fielding suggested that since low-income patients who qualify for ADAP also qualify for Medicare, the money the state spends on ADAP should be counted toward the $5,000 as if it’s paid by the patient.

De la Torre said:

“It’s a lot of money when you think about how much the state ends up losing. These people qualify under Medicare for the prescription drug benefit and they should get it. Whether the person or ADAP is paying for those drugs shouldn’t really matter because, at the end of the day, the federal government is only out what they’d be out with anybody else. That’s the fairness of this issue.

Honestly, it’s the first time I’ve heard about the hole in the donut effecting folks who are depending on the AIDS drugs….I think what we need to do is push our congressional delegation. We’re not asking them to change anything – all we’re asking them to do is to allow that ADAP expenditure to count towards the person’s total. That’s it. And therefore the federal government would pay – just like it pays for everybody else. ADAP should only fill the donut hole- it shouldn’t be the whole thing. It would save a lot of money to the state, which would make the program more robust.”

De la Torre says a congressmember could simply add a line to an appropriations bill that says, “State AIDS support funds count as the individual’s contribution for their prescription drugs.”

Look, he said:

“before, with the Bush Administration, we didn’t expect much. Now we have President Obama, a Democratic Congress – all we’re asking is to be the hole and not the whole damned donut – especially in the budget situation we’re in right now. We could get this done next year.”

Jones agreed and said testimony before the committee indicated that federal healthcare reform legislation will close that hole in the donut.

But, Jones added:

“the other thing that I hope is in the federal legislation is not only are we expanding insurance for everybody – but making sure that insurance covers treatment for HIV/AIDS.

[snip]

One of the benefits of the Democrat’s proposed legislation is that we would cover more people and reduce the need to rely on state funding. The terrible tragedy and irony, though is that it’s going to take some time – assuming the federal government adopts that legislation – to get to that place. We should not be decimating these programs at the state level now because if we decimate them, many people are going to be terribly, terribly hurt – some may even die – before the federal healthcare reform takes effect.”

Meanwhile, Jones encourages the LGBT and HIV/AIDS communities to ask the governor to include ADAP and Surveillance funding in the budget he releases this January:

“What I heard today was tremendously compelling. I think it’s absolutely essential that we keep this funding.”

Vincent-Jones said:

“We appreciate Assembly Health Committee Chair Jones bringing the Health Committee to LA for its HIV/AIDS hearing on World AIDS Day. It’s an important recognition that the largest share of people with HIV/AIDS in California, by far, live in LA County, and that any actions that the State takes which result in a reduction of access and services disproportionately impact the County and its residents with HIV/AIDS.

While there are many state issues affecting HIV/AIDS services—such as the Governor recently slashing important HIV medical and support care and treatment, and the State’s total abdication of its HIV prevention responsibilities,” he continued, “nothing is more important than the jeopardy that the AIDS Drug Assistance Program (ADAP) is in going into 2010. The Committee heard that loud and clear, and Chair Jones committed to take action not only to prevent the Governor’s additional budget cuts to ADAP, but to find and restore enough funds to fully preserve and sustain ADAP next year.”

Here’s the full letter Assemblymember Jones just sent to Schwarzenegger:

December 10, 2009

RE: Funding for the AIDS Drug Assistance Program

Dear Governor Schwarzenegger:

We are writing to urge you to restore funding you cut from the California Office of AIDS, including the AIDS Drug Assistance Program (ADAP), in the budget you are about to release.

Last week, on World AIDS Day, the Assembly Committee on Health held an informational hearing on the need for state funding for AIDS programs. The committee heard testimony from many people who are able to live productive lives and give back to their communities because of the drugs they receive through ADAP. ADAP is the cornerstone of California’s public health effort to fight HIV/AIDS. It provides life-saving medications to over 35,000 low-income uninsured and under-insured people across the state. Further cuts to ADAP will leave many of these Californians without access to critical HIV medications and put them at increased risk for more severe illness and death.

ADAP-covered medications also help prevent transmission of HIV. People on effective HIV treatment regimens can reduce their viral load (the amount of HIV in the blood) to undetectable levels, which makes transmission of the virus less likely. For every new HIV infection prevented, hundreds of thousands of dollars in treatment costs are also saved. We firmly believe that reductions in ADAP will cost the state more in future health care costs than any savings realized in the near term.

Additional cuts to ADAP will deprive people of the drugs they need to stay alive. Cuts in ADAP will also increase the burden on already-overstretched emergency rooms and other safety net providers who are ill-equipped to effectively respond to the chronic conditions of HIV/AIDS. Failure to sustain ADAP at levels that meet current and projected demand will leave people without access to life-saving medications, undermine program and cost-effectiveness, shift the cost burden to local governments and health systems, and threaten the lives and livelihoods of thousands of Californians. As we again face a growing budget crisis in FY 2010-11, we ask you to restore cuts and maintain full funding for ADAP and other HIV and AIDS programs.

Sincerely,

PLEASE CLICK ON THIS LINK TO GO TO A PDF FILE THAT HAS THE LETTER AND THE SIGNATORIES. Whose names are NOT on the letter and should be?