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ADAP Cuts Kill People: Florida/throughout USA....Budget squeeze could make HIV treatment costlier, rarer....Illinois among financially challenged states facing cutbacks
  By Bruce Japsen, Tribune reporter
February 9, 2011
From Jules: in addition we have yet to hear what the impact of mjor ARTs going generic will be. Soon efavirenz and others will be generic, will payers require breaking up Atripla and other FDCs (fixed dose combinations)? There is data suggesting HIV generics have PK/drug levels not equal to brands. The FDA generic language allows for more PK variability, there have been inadequate studies to lookat this, and the few published studies I've seen show problems. Drug resistance could be at increased risk.
"When Kibler went to pick up his medications last August, he was told that Florida's ADAP had to make some changes -- his blood pressure and antidepressant medicines would no longer be covered. Kibler says he began selling some of his possessions on eBay so he could afford medications.".........."Steven Dimmick, of Jacksonville, Fla., sold his home and car and filed for bankruptcy last year to free up money for the treatment he needs. "If I stop taking the medicine, I could get AIDS very easily," said Dimmick, shown with his dog Odie. "Now, I am just in survival mode."....."Unemployment in the state is currently around 12 percent, leaving people without incomes or insurance. The state also has the third highest number of AIDS cases in the United States, according to the Centers for Disease Control. There has been no increase in state or federal funding for ADAP in Florida for the last three years, while the number of infections has continued to rise, says Tom Liberti, chief of the Florida Department of Health's Bureau of HIV/AIDS."....."In Ohio, for example, officials have eliminated assistance for drugs not directly related to HIV, and instituted a waiting list for the program"..... Liberti blamed the poor economy and a list of applicants that has grown by 25 percent since 2008 to reach 13,000 people statewide. In 2009, the Legislature cut ADAP support by $1 million to $10.5 million. No additional funding was appropriated in 2010.......President Barack Obama has proposed an increase of $20 million for 2011, while the AIDS Institute and others are calling for an increase of $126 million. The federal government provides 49 percent of ADAP funding, down from 69 percent in 2000.


Thousands of low-income Illinoisans who have the AIDS virus could find themselves with fewer choices for life-sustaining medicines and more hurdles to get treatment, as the state continues to grapple with an unprecedented budget crunch amid increased demand and high drug prices.
Illinois has reduced the number of medications available to patients or has capped how much can be spent on the drugs through a state assistance program. Officials also have added layers to the process of how to sign up for - and stay enrolled in - the state-run AIDS Drug Assistance Program, which pays for medicines for poor and low-income Americans.
This comes at a time when state governments across the country have instituted cost-cutting measures in the federally funded program as they deal with the still-struggling economy, putting many HIV and AIDS patients on waiting lists, making eligibility harder or reducing drug options.
Meanwhile, stubbornly high unemployment is increasing patients' need for assistance to pay for HIV drugs as more people lose their jobs - and health insurance coverage - and struggle to pay out of pocket for pills. In Illinois, the number of patients enrolled in ADAP has jumped 14 percent in the past year, to 6,000.
Illinois so far has been able to stave off putting patients on a wait list, a trend that is growing in at least 10 states. More than 6,000 patients nationwide were waiting for drugs as of early February, with the largest number in Florida, and hundreds more are at risk of being dropped from programs, according to the National Alliance of State and Territorial AIDS Directors.
Some advocates for AIDS patients are concerned that states' cost-cutting strategies could turn back advances to combat the disease by decades, to a time when patients had no or few treatment options and an HIV infection often led to full-blown AIDS, then death. In the late 1980s and early 1990s, before AIDS drugs were approved by federal regulators to become widely available, the death rate from the virus rose rapidly.
"We're calling it a death warrant," said Michael Weinstein, president of AIDS Healthcare Foundation, a national advocacy group based in Los Angeles.
More than 1 million Americans are estimated to be living with HIV/AIDS. Anti-retroviral drugs lower the amount of HIV in the blood to undetectable levels, increasing patient survival rates and reducing the chances of transmitting the virus, according to the U.S. Centers for Disease Control and Prevention.
But HIV medications are expensive. Some pill regimens can cost $2,000 or more a month, particularly for newer drugs. Less expensive medications are typically older and can become resistant to the disease.
The cost of these drugs is forcing some HIV patients who are on waiting lists to sell off assets and scramble for assistance from drug company charities.
"I am on a wait list, and it's scary," said 31-year-old Steven Dimmick, of Jacksonville, Fla., who last year sold his home and car and filed for bankruptcy protection to free up money for his pills, which cost $1,400 a month retail.
For now, Dimmick is relying on a pharmaceutical company's drug assistance program.
"If I stop taking the medicine, I could get AIDS very easily," Dimmick said. "Now, I am just in survival mode."
AIDS Healthcare Foundation and other advocates have been frustrated that Congress and the Obama administration have not filled the financial void left by states, saying ADAPs need about $126 million from the federal government. The program gets grants from the federal government that then are matched by states, which vary in how they administer and provide funds for the benefits.
States and the federal government say they need to balance the needs of people with HIV/AIDS with those of other government programs.
"The Illinois Department of Public Health recognizes the importance of programs like ADAP," spokeswoman Kelly Jakubek said. "The department will continue to do what it can to provide low-income and underinsured individuals living with HIV/AIDS the life-saving drugs and treatment they need."
Obama administration officials say they have worked to reduce the size of the waiting lists and ease the impact of other cost-cutting measures by the states. A spokesman for the U.S. Department of Health and Human Services said the federal allocation toward ADAP, which was $835 million in fiscal 2010, has risen over the last three years and the "fiscal year 2011 amended budget totals $50 million over the fiscal 2010 enacted level for ADAP."
In the meantime, nonprofits are partnering with the pharmaceutical industry in an effort to chip away at the problem.
A group led by Heinz Family Philanthropies of Pittsburgh and South Carolina-based Welvista has been working with North Chicago-based Abbott Laboratories and nearly a dozen other drugmakers to wean from ADAP waiting lists those patients who don't qualify for assistance from Medicaid, the federal-state health insurance program for the poor.
So far more than 650 people from waiting lists have been enrolled in the program, which gives them medications for 12 months.
"It is very unclear when Congress will allocate the needed funding," said Jeffrey Lewis, president of the Heinz Family Philanthropies. "And, as they continue to wait, more and more states are adversely impacted because many have simply run out of money."
Instead of putting HIV/AIDS patients on waiting lists, some states have lowered the income threshold for eligibility to $21,000 for a single-person household and added more paperwork, requiring patients to re-enroll for program benefits. In Illinois, patients must re-enroll in ADAP every six months.
Advocates said those policies can have the same effect as putting someone on a waiting list.
"This is an artful concept whereby you simply get people to drop out of the program," AIDS Healthcare Foundation's Weinstein said. "It is rationing, but they are not calling it that."
Illinois health officials say they are trying to mitigate any burden to people with HIV. They defend the state's $2,000-per-month cap on patients' access, saying the average cost per person is $1,050.
In addition, Illinois officials said, the state runs one of just six ADAPs in the country that allows patients to have an income of up to 500 percent of the poverty level, or $54,150 for an individual, and still be able to participate in the program.
"The Illinois ADAP has made no dramatic cuts," said Melaney Arnold, spokeswoman for the state Department of Public Health, which administers ADAP. "The number of medications on the formulary was reduced as part of a cost-containment strategy and also to remove some older medications that were not being used frequently."

Funding gap threatens AIDS drug help
HIV/AIDS patients who can't afford their drugs could go without them if funding runs out in February. But major manufacturers say they may supply the drugs to tide them over.
Patients who need HIV/AIDS drugs but can't afford them could be in danger of going without if the Florida program that supplies the drugs runs out of money as threatened by mid-February, state officials said Wednesday.
The AIDS Drug Assistance Program has a $14.5 million funding gap that could last until the new funding year begins April 1.
``We're running out of money, and we're trying to help the patients through this six-week gap,'' said Tom Liberti, chief of the HIV/AIDS Bureau of the Florida Department of Health. ``We're exploring all our options.''
But Liberti said he's ``99 percent of the way'' toward working out an agreement in which major drug manufacturers will supply drugs to tide over the program.
Locally, the Miami-Dade HIV/AIDS Partnership, which advises the county on AIDS matters, will hold an emergency meeting Friday to discuss whether to reduce the number of nonessential drugs available to AIDS patients while keeping them supplied with life-saving antiretroviral medicine.
Doctors say it's important for newly diagnosed HIV patients to get antiretroviral drugs quickly to keep them from progressing toward AIDS and to reduce the chance of infecting others.
In Florida, ADAP has been providing drugs to 10,600 patients, with 3,000 of them in Miami-Dade and Broward. Short of money last year, the state on June 1, 2010, started putting new patients on a waiting list that now has an additional 2,800 people, including 685 in Miami-Dade and 475 in Broward, Liberti said.
Patients on the waiting list have been receiving antiretroviral drugs from major pharmaceutical companies' charity ``Patient Assistance Programs,'' but in some cases have been unable to get ``nonessential'' drugs that treat side effects.
``At present, no patients are doing without AIDS drugs,'' said Dan Wall, director of the Miami-Dade Office of Grants Coordination. But he said funding could run out by mid-February unless a solution is found. On April 1, another $100 million in federal AIDS drugs funding arrives in Florida, Liberti said.
Help may be on the way through Wellvista, a South Carolina nonprofit organization. The group, acting on behalf of medical manufacturers, helps provide drugs to patients who can't afford them. ``We have nearly every major manufacturer -- Merck, GlaxoSmithKline, Bristol-Myers Squibb and others,'' said Jeffrey Lewis, president of Heinz Family Philanthropies, which is working with the drug companies.
Also, state Sen. Joe Negron, a Stuart Republican, and others are working to persuade the Florida Legislature to provide money to help support the ADAP program, Liberti said.
Liberti blamed the poor economy and a list of applicants that has grown by 25 percent since 2008 to reach 13,000 people statewide. In 2009, the Legislature cut ADAP support by $1 million to $10.5 million. No additional funding was appropriated in 2010.
President Barack Obama has proposed an increase of $20 million for 2011, while the AIDS Institute and others are calling for an increase of $126 million. The federal government provides 49 percent of ADAP funding, down from 69 percent in 2000.
While funding is being worked out, the Miami-Dade HIV/AIDS Partnership may have to recommend temporary restrictions on certain nonessential medications like vitamins and aspirin, a spokeswoman said.
On Friday, the Partnership will hold an emergency meeting at the Behavioral Science Research building, 2121 Ponce de Leon Blvd., Coral Gables, to discuss such restrictions and how to deal with the financial crisis. The meeting is open to the public. Call 305-443-2000 for information.
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