RW funding News..important to many threads

[Juzme3165]

I think Now would be a good time to start writing letters and start getting active before the funding lines are stretched so thin PWA will be back in the 80's... !!!!  INCREASE FUNDING !!!

Greg+


LOSING FEDERAL AIDS FUNDS
New formula could cost N.J. millions
Wednesday, October 11, 2006
BY RUSSELL BEN-ALI
Star-Ledger Staff
A spending bill before Congress could revamp the way federal HIV/ AIDS funds are distributed and steer millions of dollars away from New Jersey, where the lives of some of the neediest AIDS patients would be threatened, public health advocates fear.

A controversial new formula for doling out Ryan White CARE Act funds would shift money away from the urban zones of New York and New Jersey and into rural areas and Southern states like Alabama, Kentucky and North Carolina, where dramatic rises in HIV cases have been reported.

The House of Representatives approved the bill earlier this fall, but a companion bill in the Senate has been stalled by legislators from New Jersey and New York. Propo nents could force another vote or attach the measure to another bill when Congress returns from midterm election recess next month.

New Jersey could lose as much as $70 million over five years if the changes are implemented, critics said, although some districts within the state would see an increase. The Newark metropolitan area, for instance, would gain more than $851,000 the first year, and small gains would be seen in the metro areas of Middlesex-Somerset-Hunterdon and Vineland-Millville- Bridgeton.

Despite the gains, the statewide loss in the first year could reach between $12.3 million and $15.6 million, about 20 percent of the Ryan White funds allocated last year to New Jersey and its cities.

Named for Ryan White, an 18-year-old hemophiliac from Indiana who died of AIDS, the law was enacted in 1990 and is reauthorized by Congress every five years. At more than $2 billion per year, it is the largest federal program specifically for people living with HIV/ AIDS. It provides an annual stream of money to states, cities and pub lic and nonprofit entities for health care, medication, housing, counseling, testing and education.

Lawmakers from Southern and rural states claim the funding for mula is outdated. They say the virus, once thought to be a big-city illness that primarily strikes gay white men, is rapidly spreading in the South, in rural areas and among minorities.

The bill, sponsored by Rep. Mary Bono (R-Calif.) and Sen. Mike Enzi (R-Wyo.), has brought a storm of criticism from urban states like New Jersey.

Rep. Robert E. Andrews (D-1st Dist.), who voted against the measure, said it created winners and losers among states forced to compete for an insufficient amount of funds to cover the nationwide HIV/AIDS epidemic.

"New Jersey was definitely a loser," Andrews said. "We shouldn't be fighting for a dollar here and a dollar there with California or Ohio or some other state. There's people all over the country that have this need and we are not fulfilling it."

Rep. Frank Pallone Jr. (D-6th Dist.), who also voted against the bill, offered an amendment that would keep the current funding for mula for an additional year while Congress explores ways to meet the needs of urban, Southern and rural states.

"Otherwise, all we are doing is robbing Peter to pay Paul," Pallone said. His proposal was narrowly defeated in the House Committee on Energy and Commerce, where the bill originated.

Proponents of the measure said the HIV/AIDS epidemic has moved to rural belts and Southern states but federal funds have not followed.

This "begins to treat all states on an equal footing," said Rep. Joe Barton (R-Texas), who voted for the bill.

Enzi, sponsor of the Senate companion bill, attempted to force a vote on the bill before the recess but failed when Sen. Robert Me nendez (D-N.J.) objected.

"These states were grossly overpaid last year," Enzi said of New York and New Jersey.

The current spending formula counts AIDS patients in states and in urban zones, known as Eligible Metropolitan Areas. The new bill also counts HIV patients who have yet to develop AIDS. And seven of the nation's 10 highest HIV rates, the number of cases per 100,000 residents, are in the South.

The rate of HIV infection has slowed in New Jersey over the past 12 years or so, said public health advocates, who attribute the drop to education efforts funded by the Ryan White program. But the de crease is not monumental and ad vocates fear a funding loss could re verse trends in a state where 32,000 people live with HIV or AIDS, the fifth-highest number in the nation.

"There is clearly a rising rate of HIV infection in Southern states," said Eddy Bresnitz, deputy commissioner and state epidemiologist for the New Jersey Department of Health and Senior Services. "That doesn't mean that there's a dramatically falling rate of HIV infec tion in states that historically have had high incidences of HIV/AIDS."

Nearly four of every five persons living with HIV/AIDS in New Jersey are minorities, according to recent state statistics. One in three is female.

And about 70 percent of New Jersey's HIV/AIDS population was 40 or older at the end of 2005, according to state data.

"We have a much more mature epidemic," explained Axel Torres Marrero, director of public policy and legal affairs at Hyacinth AIDS Foundation, one of the oldest and largest AIDS service organizations in New Jersey. "So it sends the wrong signal to say to people who have been living with AIDS for 15 years, 'Well, you've had a nice ride.' And it seems that's what they're saying."

Critics say that's a tough message for patients who battle serious illnesses yet have no insurance, jobs or housing, the very population the program was meant to serve.

"Without exaggeration, I wouldn't be alive today without those funds," said John Fenimore, 33, a former resident of The Eric Johnson House in Morristown.

The 10-bed residence provides transitional housing and support services for people who have HIV/ AIDS, substance abuse problems, no housing and no medical insurance.

Fenimore said he contracted HIV 10 years ago, in the midst of a desolate eight-year addiction to heroin. Three years ago he kicked his drug dependence while at Eric Johnson and now works there part- time as a house manager.

"The medication is so expensive that, for persons like myself without health insurance, there's absolutely no way we can afford them," Fenimore said. "And the medications are doing a great job of keep ing us alive and helping us still lead fuller, more productive lives."

For Elizabeth Perez of Hudson County, a 20-year bout with HIV/ AIDS was marked by dismal periods that left her sick and broke, unable on her own to afford the rent, buy life-saving prescription drugs or see a dentist to check for cancerous oral sores.

She said she contracted HIV around 1986 from a boyfriend who didn't tell her that he was bisexual. In the worst of times -- when she risked eviction from her apartment and faced high medical costs -- Ryan White funds came to her rescue.

"We could be in bad shape, if these cuts were to happen," warned Perez, 53, who works as a part-time consumer advocate at Hyacinth. "How do you help people if you have the money to serve 100 people and you find 300 that are HIV-positive?"

At The Eric Johnson House in Morristown, the cuts could lead to pink slips for staff and the referral of patients to the waiting lists of crowded facilities for addiction and mental health counseling, said executive director Laurie Litt-Rob bins.

"Ryan White Title I dollars is sort of like the last resort when you don't have any other means by which you can get the medical attention that you need," said Dwight Peavy, executive director of the Newark EMA, which helps fund Eric Johnson. "And certainly when we talk about Newark ... and the disparity, people are certainly without resources."



Material from the Associated Press was included in this report. Russell Ben-Ali may be reached at rbenali@starledger.com or (973) 392-5807.




© 2006  The Star Ledger
© 2006 NJ.com All Rights Reserved.

[Oceanbeach]

Feel free to use www.Commission-on-AIDS.org
Have the best day
Michael

[Moffie65]

Greg,

Thanks for posting this very interesting article.  I doubt that many here will read the whole of the content, but their very lives depend on paying attention, but se la vie.

I want to point out the difference in actual facts that exist in other parts of the U.S., and see if maybe you fairly wealthy people on the east and west coasts can possibly see your way to understand the vast chasim that has existed throughout this pandemic, simply because of the narrowmindedness of Washington.  CDC, NIH, HHS all are at fault for not recognizing this as a Viral Protein and a true Global Pandemic.

For Example; 
A controversial new formula for doling out Ryan White CARE Act funds would shift money away from the urban zones of New York and New Jersey and into rural areas and Southern states like Alabama, Kentucky and North Carolina, where dramatic rises in HIV cases have been reported.
  For those of us living in the rural hinterlands, funding has ALWAYS been "Controversial" as there has NEVER been enough to cover the need, however units like GMAC and other mega ASOs have always been able to out shout and out spend over those like us who cannot even get our whispers listened to.

They say the virus, once thought to be a big-city illness that primarily strikes gay white men, is rapidly spreading in the South, in rural areas and among minorities.
Here again, we can thank the CDC and the HHS for this embarassing ignorance!

The bill has brought a storm of criticism from urban states like New Jersey.

My heart bleeds purple piss for you.  This is our punishment for not speaking as one voice, and separating out the funding into those with the largest lobbies, or the loudest voices, or the most highly paid lawyers.  I say that the states should have never been forced to compete for dollars when we are talking about the spread of a disease.  This is total insanity.

Rep. Robert E. Andrews said it created winners and losers among states forced to compete for an insufficient amount of funds to cover the nationwide HIV/AIDS epidemic

DUH!

"There is clearly a rising rate of HIV infection in Southern states," said Eddy Bresnitz, deputy commissioner and state epidemiologist for the New Jersey Department of Health and Senior Services. "That doesn't mean that there's a dramatically falling rate of HIV infection in states that historically have had high incidences of HIV/AIDS."


Would someone please get this man's e-mail address to me, a job as state director of RW Title II services in Phoenix just opened up yesterday, and we could use someone with a brain in Arizona.  The lady that is leaving is one of the few that has any sanity in HIV work here, and we will miss her so very much.  Please let Eddy know we have a job for him in a very warm and loving climate.

Just as a refresher; we have currently registered nearly 100 clients.  Our RW funding was $145,000.  The state director of RW Title II took $20,000 from another account and boosted the  grant to $165,000.  No doctors in our region, outside of Tucson, are treating HIV clients, save for one.  This means that just for travel to get clients to the doctor, we must allocate an inordinate amount of money towards "transport", as many of the clients must travel 300 miles or more round trip, and Washington says we cannot re-imburse dollars, but only gas cards or bus fare. 

We have no money for food assistance to speak of, we have no counseling dollars, and only $1000 for each of the line items mandated funded for the year.  We have heavily funded Medical Care, and Transport, and that is about it.

Thanks New Jersey, New York, California, and all you other states for the few dollars we "MIGHT" see out of this very disturbed Adminsitration.  Meanwhile, clients are still dying from lack of care, but hell, there isn't anything we can do when those of you living in the overly funded Cities will not care, or speak out for your brothers and sisters living in the bush of this land. 

(Please don't say anything about us moving back to the cities where we could live with extravagant comfort in our cars under freeway overpasses)

This whole thing pisses me off to no end, because somewhere along the line, we let our government divide us and make us fight each other for the very dollars that will keep us alive.  HMMMMMM do I possibly see an alternative motive in this very disturbing turn of events?

In Constant Awe!!!

[allopathicholistic]

Would someone please get this man's e-mail address to me, a job as state director of RW Title II services in Phoenix just opened up yesterday, and we could use someone with a brain in Arizona.  The lady that is leaving is one of the few that has any sanity in HIV work here, and we will miss her so very much.  Please let Eddy know we have a job for him in a very warm and loving climate.

ebresnitz@doh.state.nj.us

[Moffie65]

Allo,

I am giddy with joy, and thanks so very much.....  We will seeee....

[Iggy]

.

[Juzme3165]

Hey all !

Much of this information makes it clear that the CDC and all the other bureaucratic agency's involved in the funding process really are morons.

Lets face it, where you live should not dictate if you get help no matter what condition you suffer from.  Funding should be given based on the population being served in each region, state and organization.  Its common sense.  The real problem is that the funding needs to be INCREASED. 

I was under the impression that some of the RW funds are given on the basis of the total number of clients served in each organization... clearly I was mistaken?

Also, are there many people out there that get medications through a special drug pricing program often referred to as PHS or 340B???  Such programs can cut the cost of drugs 50%.  (Does anyone have a clue what I'm talking about?)  It seems to me that ASO's can't afford to open their own pharmacies and staff them but I know they can contract pharmacy services.  Locally in NE Pa, I have attempted to reach out to the ASO here and offer at least a standard discounted drug formulary to save them money, but they never get back to me.  So, PWA here are paying like $80.00 for generic Xanax when no one else in the country pays more than $10.00. 

It is things like this that just make my head spin.  Most people just don't know what is going on compared to what should be going on.  As a well informed person, I see all of this confusion permeating ASO's and now the added insult of reduced funding I just can't believe it is allowed to continue.

I don't have all the answers but I don't think it is too much effort to write a few letters to congressmen, senators, ASO and others involved on the government side of the funding issue. 

If there are organizations that you know of that can benefit from reduced pricing for their client's prescriptions...I would be happy to work with ANY of them (Our pharmacy is licensed in 48 states) for the benefit of all.

Take care and remember in all our getting we should try and get some understanding...

Greg+

[zephyr]

Hi,

Just yesterday, I sent letters to Senators Boxer, Feinstein, Enzi and Kennedy.

Hopefully, a perspective from an HIV+ female will help.

I'm here to tell you, there's a whole bunch of we ladies who are organizing in a BIG way right now...there's so much going on behind the scenes, it would make your head spin.

In Solidarity,

Zephyr

[Juzme3165]

There has always been something about the common sense of women that has impressed me !  Women always seem to be able to accomplish the impossible. How often I have seen a woman go to work, do laundry for 5, clean a house, get dinner on the table, get the kids off to school, grocery shopping, a thousand other things and even have time to wash the car...and so on !!!!   I have trouble finding dinner for myself !!!  LOL !

Thank you for your efforts and for sharing them with us...I know I appreciate what your doing !  Please, let us know if there is anything we can to to assist.

Greg+